Journalism and Health in Uganda
Uganda Health
Journalism
Conference 2010
JOURNALISM and Health in Uganda HANDBOOK
SPONSORED BY:
International Center for Journalists
Advancing Quality Journalism Worldwide1
Journalism and Health in Uganda
Uganda Health
Journalism
Conference 2010
Acknowledgements: This booklet was compiled by Christopher Conte, Knight International Journalism Fellow and Vincent Akumu of the Uganda Health Communication Alliance. Other contributors include: Esther Nakkazi of the East African newspaper; Richard Hasunira, AVAC HIV Prevention Research Advocacy Fellow based at HEPS-Uganda; Kakaire Kirunda, a fellow in the Makerere University School of Public Health-Centers for Disease Control HIV/AIDS Fellowship program; Evelyn Lirri of the Daily Monitor; Emililo Ovuga, dean of the Gulu University Faculty of Medicine; and Jennifer Bakwaya, Project Officer, Communication, Council on Health Research for Development.
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Table of Contents 1: Journalism and Health in Uganda Today........................................................................................4 • What Is Good Journalism (from African Centre for Media Excellence)................................................5 • Uganda Health Journalists Survey..................................................................................................6 • Principles for Health Journalists (Association for Health Care Journalists).....................................13 • Fantastic Features: A Short Cookbook for Writers.....................................................................16 • Train Yourself: Useful Websites..................................................................................................19 2: Health Policy Reporting.................................................................................................................20 • Uganda Health Policy Overview Paper.......................................................................................21 • Major Uganda Health Policy Documents....................................................................................28 • Model Health Policy Stories and Sources...................................................................................29 • Uganda Hospital System Woes................................................................................................30 • Cost Effectiveness: A Key to Better Health Policy......................................................................31 • Analysing Uganda’s Health Budget..........................................................................................33 3: Corruption and Waste in Uganda’s Health System......................................................................37 • The World Bank: Fiscal Space for Health in Uganda (May 2009)...................................................38 • Additional Reading on Corruption............................................................................................44 4: Reporting on Community Health..................................................................................................45 • Steps in Health Journalism: Emilio Ovuga, Dean, Gulu University Faculty of Medicine...........46 • Resources on Community Health...............................................................................................47 • Using the Internet to Improve Accuracy of Health Reporting....................................................48 5: Reporting on Medical Science and Research..............................................................................51 • Makerere University Releases Report On Uganda Media Coverage Of Health Research Issues.............52 • Why Simply Scientific Data Is Hard to Come By................................................................................54 • HIV-Prevention Research: It’s a Community Process .......................................................................57 • Understanding Studies: The Hierarchy of Evidence, from “Covering Medical Research: • a guide to Reporting on Studies ” ...............................................................................................60 • Tips for Understanding Studies.....................................................................................................63 • Digging Deeper: Other Web Resources on Health and Science.........................................................65
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Journalism and Health in Uganda Today
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What is Good Journalism? African Centre for Media Excellence (www.acme-ug.org)
Good journalism does not merely inform; it provides information that has meaning for people’s lives • It provides information that is significant and relevant; • It offers context and perspective; • It explains issues and helps to educate and enlighten audiences; • It offers analysis and depth; • It provides a civic forum that both informs and engages the public; • It drives public debate on the issues of the day, including rarely discussed subjects that affect people’s lives; • It asks the right questions and provides a forum through which they can be answered; • It is credible and authoritative; • It upholds the value of diversity; • It is truthful and accurate; • It is fair and impartial; • It is independent (from vested interests, be they political or commercial); • It is enterprising; • It is interesting. What it takes • A good understanding of the institution (s) or communities you cover. • How do they work? What are the key processes? What is the jargon of the institutions? What is the language of the community? Who are the key players? What are the ‘other voices’ that are rarely covered? • Cultivating human sources in the institution (s) or community; having a diverse source base. • Understanding the other potential sources of information, including documentary evidence. • Research. • A willingness to go beyond official institutions e.g. Parliament, City Hall, the Police to the community. • What are the key concerns of the community? Is it crime, defilement, poor roads, lack of electricity, or all the above? What is the central government and/or local authorities doing about them? What are the other stakeholders doing about them? • An inquisitive mind. • Intellectual curiosity. • A broad, all-round education. • A multi-disciplinary understanding of issues. • A love of current affairs. • Confidence. • Skepticism. • Humility. • Passion. • Determination. • Hard work. • Enterprise and creativity. • A good command of language. • Patience. • Continuing training and education. • A willingness on the part of media managers/owners to invest in good journalism
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Health Journalism in Uganda: Results of Survey November 2010
With support from the International Center for Journalists, Evelyn Lirri of the Daily Monitor conducted an online survey of health journalists from throughout Uganda. More than 400 journalists were invited to participate, and 157 responded. While the survey may not have been perfectly representative – the initial contact list was based on our experience over three years in meeting and working with journalists around Uganda – it does provide a significant cross section of working journalists today: • • • • •
28% of the respondents are print journalists; 57% are from radio, 5% from television and 8% describe themselves as “other.” 60% are male and 40% are female. 26% are freelancers and about 45% are either retained or staff correspondents. 18% are editors 46% are university-educated, 38% hold diplomas, 13% have certificates, and 3% describe their educational attainment as “other.”
The questions and results follow.
What training have you received since becoming a journalist? a. None b. Course(s) at an academic institution c. Workshop sponsored by an NGO or other organisation(s) d. On-the-job training by your editors/media house e. Other
3.9% 34.9% 77.0% 50.7% 8.6%
What is your net income from journalism per month? a. Less than UgShs 150,000 b. UgShs 150,000-300,000 c. UgShs 300,000-700,000 d. UgShs 700,000-1.5M e. Ugshs 1.5M or more
14.6% 38.2% 29.3% 13.8% 4.1%
What is the most important consideration that attracted you to journalism? a. To earn a living b. To help people c. To entertain people d. To build a career in a non-journalism profession e. Other
9.9% 66.1% 0.8% 11.6% 11.6%
How long do you expect to continue working as a health journalist? a. Better pay elsewhere
5.0%
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How long do you expect to continue working as a health journalist? Answer Options a. Less than a year b. 1-2 more years c. 2-4 years c. Four years and more
Response Percent
Response Count
4.2% 8.3% 10.8% 76.7%
5 10 13 92
What is the most important consideration that would make you leave journalism? Answer Options a. Better pay elsewhere b. Better working conditions elsewhere c. Better opportunities for professional growth elsewhere d. Better opportunity to make a difference elsewhere e. Other
Response Percent
Response Count
5.0% 5.0%
6 6
53.3%
64
22.5% 14.2%
27 17
What/who are your primary sources of health news? Please check all answers that apply. a. National/local government officials b. Practicing Medical Doctors/nurses c. Traditional healers/traditional birth attendants/herbalists d. Pharmacists e. Academicians f. NGO officials g. Internet h. Other
75.9% 78.7% 34.3% 32.4% 38.0% 63.9% 69.4% 10.2%
Please rate each of these sources according to how accessible and useful they are. 1. National/Local government officials a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
4.9% 34.0% 43.7% 17.5%
2. Practicing Medical Doctors/nurses a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
3.8% 20.2% 43.3% 32.7%
3.Traditional healers/traditional birth attendants/herbalists a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
23.6% 46.1% 19.1% 11.2%
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2. Practicing Medical Doctors/nurses
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a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
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20.2% 43.3% 32.7%
3.Traditional healers/traditional birth attendants/herbalists a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
23.6% 46.1% 19.1% 11.2%
Pharmacists a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
22.6% 38.7% 31.2% 7.5%
Academicians a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
11.7% 26.6% 37.2% 24.5%
NGO officials a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
3.0% 17.2% 40.4% 39.4%
Internet a. Not helpful b. Somewhat helpful c. Helpful d. Very helpful
0.0% 7.9% 28.7% 63.4%
If you are a reporter, what best describes your relationship with your editor(s)? a. Constructive/helpful b. Not constructive/unhelpful c. Occasionally constructive
84.8% 1.1% 14.1%
If you are a reporter, what best describes your editor’s attitude toward health stories? a. Editor interested in health stories b. Editor occasionally interested in health stories c. Editor not interested in Health stories d. Editor interested but puts a priority on other kinds of coverage.
57.3% 18.0% 3.4%
â–ś
21.3%
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If you are a reporter, what best describes your relationship with your editor(s)?
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a. Constructive/helpful b. Not constructive/unhelpful c. Occasionally constructive
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84.8% 1.1% 14.1%
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If you are a reporter, what best describes your editor’s attitude toward health stories? a. Editor interested in health stories b. Editor occasionally interested in health stories c. Editor not interested in Health stories d. Editor interested but puts a priority on other kinds of coverage.
57.3% 18.0% 3.4% 21.3%
If you are an editor, what best describes your reporters’ attitudes? Please check all answers that apply. 69.4% a. Hard working and willing to learn and improve 1.6% b. Not hard working or willing to learn and improve 41.9% c. Having basic skills 11.3% d. Lacking basic skills 33.9% e. Having a basic understanding of health issues 19.4% f. Lacking a basic understanding of health issues 38.7% g. Interested in health stories 9.7% h. Not interested in health stories
What best describes the attitude of the owner(s) of your media house? a. Committed to journalism as a public service b. Mainly interested in money c. Mainly motivated by politics d. Other
53.3% 26.7% 11.4% 8.6%
Do you receive facilitation from your employer for (check all answers that apply): a. Travel/Transport b. Airtime c. Internet use d. Other
Correction to health conference handbook:
68.9% 46.6% 68.0% 13.6%
Does your employer provide you enough facilitation in a typical month to cover stories adequately?
On and replace with the following: 24.3% a. page Yes 9 of the booket, delete the last question and answers b. No
75.7%
that apply): In the past year, year, have have you youreceived receivedfacilitation facilitationfrom from(Please (Pleasecheck checkallallanswers answers that apply): a. Lack of support from editors b. An Lack of cooperation by sources a. NGO c. Lack of facilitation b. A private company d. Lack of airtime/Internet access c. government official/agency e. A Your own lack of understanding of the subject d. A training organization
13.9% 39.6% 26.7% 3.0% 16.8%
e. An individual How can the quality of your health reporting best be improved? 14.3% a. More training in journalism What is training the mostinimportant health reporting? b. More health main barrier to improving your72.4% 11.4% c. Better facilitation 1.9% d. Lack Higher 13.9% a. ofpay support from editors 0.0% e. Lack Stronger editing 39.6% b. of cooperation by sources
50.7% 16.0% 17.3% 56.0% 21.3%
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17.3% c. A government official/agency Does your employer provide you enough facilitation in a typical month to cover stories adequately? Uganda Health 56.0% d. A training organization Journalism 24.3% a. Yes 21.3% e. An individual Conference 2010 75.7% b. No
Journalism and Health in Uganda
What is the most important main barrier to improving your check healthall reporting? In the past year, have you received facilitation from (Please answers that apply): a. Lack of support from editors a. Lack of support from editors b. Lack of cooperation by sources Lackofoffacilitation cooperation by sources c.b.Lack c.Lack Lackofofairtime/Internet facilitation d. access d. Lack of airtime/Internet accessof the subject e. Your own lack of understanding e. Your own lack of understanding of the subject
13.9% 39.6% 26.7% 3.0% 16.8%
13.9% 39.6% 26.7% 3.0% 16.8%
How can the quality of your health reporting best be improved?
Then pick up with the first question at the top of page 10 (“How can the quality of your health reporting 14.3% a. More training in journalism best be improved?”) b. More training in health c. Better facilitation d. Higher pay e. Stronger editing f. Other
72.4% 11.4% 1.9% 0.0% 0.0%
What You Told Us Many of the journalists who responded to the survey offered comments on a wide range of issues. There were too many comments to reproduce them all, but here are some: What attracted you to journalism? • I thought that through the pen, I would reach out to the world to explain issues and enable people understand and help the underprivileged •
I always wanted to be the eye of the blind and voice of the voiceless, especially the poor.
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When I realized that there was no information flow from bottom to top, I took up Journalism to bridge the gap, since most media houses existed only in Kampala
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Especially in this season of elections, politicians tend to play with people’s minds. It’s (up to) me and you now to tell the public what is right and wrong.
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Because I am a journalist, I now have a career just like other professions.
What would make you leave journalism? • To explore more about mankind. I would like to become a social worker and remain in the community like a journalist. •
A more challenging job that can help me make a difference in people’s lives at another level. The level of journalism profession is going down by the day, and I no longer feel proud telling the world that I am a journalist practicing in Uganda
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I have always wanted to do what I am doing. But journalism demands too much time from an individual. Now that I am a wife and mother, I will have to bow out soon.
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Limited equipment to do the work, limited transport, very poor pay, limited training opportunities to better build the professional career
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Constant threats that might lead loss of life
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If employers abuse my working rights or the government amends its constitution to punish journalists.
Do editors, media houses pay enough attention to health? • Political issues are often ranked above health except in cases of health disasters like an epidemic •
I write for a community based vernacular newspaper, so my editor asks me what health story I have for the week’s publication.
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This is a tabloid which concentrates whose theme rotates around sex scandals, shocking stories, political controversy. Health is taken is a by-the-way.
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They do not take health stories seriously, and there is a fatigue about TB, AIDS and Malaria the most highly funded diseases.
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It is the company new policy that health news takes over 75% of the news content
How do editors rate reporters? • Though health issues cut across, most reporters ignore them and they consider going for general news stories most especially in this commercialised world where they are assured of an envelope at the end of the day particularly from politicians. •
It seems people have come to accept whatever services they get in Health Centres or Units as the best they can get and are resigned to that and rarely ask for more. It looks very normal to meet an ambulance parked outside a bar, yet a woman in labour is being carried on a stretcher a few metres away to hospital -- assuming she reaches there any way!!!
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Most reporters, don’t concentrate much on health stories because every time they want a comment from the health official, they are not tended to.
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The new generation just wants to check Face Book and not investigate issues deeply.
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Most reporters would like to write and publish health stories but they don’t have the basic understanding of health issues and how to interpret them.
How do journalists rate media owners? • My radio station is for a politician who is more interested in politics and uses the radio for publicity. •
Our focus now is on community stories covering health, education, farming, politics and all other aspects that affect the public.
•
Being a Catholic Church-founded station, public service is the base on which it lies.
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The target of the media owner is always money.
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So many owners don’t understand the ‘social contract’ the media has with the society. But to be fair to them, sometimes, they have to protect their investments from the actions of the jittery government, especially if a story is not in favour of the establishment. So they will tend to concentrate on light issuesentertainment, social problems such as relationships.
•
The owners think and believe the radio is purposely to earn money and so things like health should only be reported when they are sponsored by either government or NGOs
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Our radio station is owned by a politician but it is been run independently without interference, this encourages us to even work for the best.
Do media houses give reporters enough facilitation to do their jobs? • Normally facilitations are given for short time, making it very hard to get comprehensive information. •
We get facilitation but not really enough.
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In most occasions I have to use my own money. Facilitation or transport can only be given when editor feels that the story is big.
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I have a big region to cover of about 33 districts and I am given only Shs. 250.000 per month for all reporters in the Bureau
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Owners don’t see a direct return on field work much as we in the profession know the benefits
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Some stories are not written due to lack of facilitation
What impact does facilitation from sources other than reporters’ employers have on journalism? • It compromises my independence •
I was able to travel to USA to tell the world about how the war has affected the community of northern Uganda.
•
You sign on form that has no amount in it. This gives you to have nightmares that they may put a lot of money and then use to accuse you to your employers if write an article that has been given little space or does not sell them or has not appeared at all. So you think of the angle that can the story published. It should also be written in a way that cannot directly show your editor that you received money. It is a real headache!
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I have no problem with it as long as it’s not bribery. Most organizations understand the nature of our work and meager salaries we receive from our work places. In most cases it’s a token of appreciation.
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It creates undeserved demand to have their stories written in a particular way. Some even demand front pages for their stories
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Helps me get the stories I want but never influences the way I do the story
How can we improve health journalism? • We need to know the health reporting language •
Sources should be readily available when contacted. This would help us understand and explain the subjects we are writing about
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There are ideas, but framing them into newsworthy and sellable story ideas is still a challenge.
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Because, even if payment is increased, it cannot help to write a good health story if one does not know health terms, issues, sources of news and intelligence
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Some sources are arrogant. A medical spokesperson in my region will actually tell you that reporting on medical issues is not your responsibility, or may choose not to talk to a reporter because he is busy, even when there an epidemic.
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Some of the jargon used by the medical practitioners are difficult for reporters to interpret. They end up saying that we misinformed the public.
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Principles for Health Journalists The Association for Health Care Journalists (www.healthjournalism.org)
PROFESSIONALISM, CONTENT, ACCURACY Because our objectivity and credibility is paramount, health care journalists are bound by professional standards of truth, accuracy, and context in every report. To achieve this, health care journalists should: •
Be vigilant in selecting sources, asking about, weighing and disclosing relevant financial, advocacy, personal or other interests of those we interview as a routine part of story research and interviews.
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Investigate and report possible links between sources of information (studies or experts) and those (such as the manufacturers) who promote a new idea or therapy. Investigate and report the possible links between researchers and private companies, researchers and public institutions, patient advocacy groups and their sponsors, celebrity spokespersons and their sponsors, non-profit health and professional organizations and their sponsors.
•
Recognize that most stories involve a degree of nuance and complexity that no single source could provide. Journalists have a responsibility to present diverse viewpoints in context. In addition, anyone with knowledge of the health care industry, of medicine, and of the scientific community knows that many vested interests reside among government health spokespersons, researchers, universities, drug companies, device manufacturers, providers, insurers and so on. To reflect only one perspective of only one source is not wise. Most one-source stories lack depth and meaning. Avoid single-source stories.
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Understand the process of medical research in order to report accurately. Realize, for example, the distinction between Phases I, II, and III drug trials. It is misleading to report bold or conclusive statements about efficacy in Phase I trials since the primary goal of Phase I trials is to evaluate safety, not efficacy. (The National Cancer Institute offers a simple guide.) Be cautious in reporting results of preliminary studies, in vitro or animal studies. Give accurate portrayals of the status of investigational drugs, devices and procedures, including significant caveats and explanations of hurdles, unknowns and potential problems.
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Preserve journalistic independence by avoiding the use of video news releases or the use of quotes from printed news releases. Label and credit the source whenever a portion of a video or printed news release is used.
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Be judicious in the use of television library or file footage. The use of footage from the past may be inappropriate, misrepresentative, or embarrassing to individuals if used today. It may not even fit the topic of the day. Strive to ensure that your television station has policies on the use of health-related file footage by all news personnel.
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Recognize that gathering and reporting information may cause harm or discomfort. Use special sensitivity and understand legal limits when dealing with children, mentally handicapped people and inexperienced sources or subjects. Always consider alternatives that minimize harm while making accurate reporting possible.
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Show respect. Illness, disability and other health challenges facing individuals must not be exploited merely for dramatic effect.
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Remember that some sick people don’t like to be called “victims.” Be careful with the use of the term “patients.” This can contribute to the medicalisation of normal states of health. Calling people in an experimental trial “patients” or referring to an experimental intervention as a “therapy” may contribute
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to the notion of therapeutic misconception, the implication that subjects in a research trial will certainly derive direct therapeutic benefit from what is actually an experiment with uncertain benefits and harms. •
Avoid vague, sensational language (cure, miracle, breakthrough, promising, dramatic, etc.)
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Make sure anecdotes are appropriately chosen to serve the interests of fairness and balance. Avoid the “tyranny of the anecdote.” Personal stories used as examples must be consistent with the larger body of evidence. Whenever possible, individuals who had both positive and negative outcomes should be included.
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Quantify the magnitude of the benefit or the risk in the story. Explain absolute risk or benefit, along with relative risk or benefit whenever possible. A 50 percent increase in relative risk may not mean much if the absolute numbers are small. Consider explaining the “number needed to treat” - the number of people you would have to treat with the experimental intervention (compared with the control) to prevent one event. (See information from the Cochrane Collaboration.)
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Report the complete risks and benefits of any treatment, along with the possible outcomes of alternative approaches, including the choices of “watchful waiting.”
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Clearly identify and explain the meaning of results that indicate an association, rather than a causal link, between factors in a study. Remember: association is not cause.
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Clearly define and communicate areas of doubt and uncertainty. Explain what doctors don’t know as well as what they do know.
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Seek out independent experts to scrutinize claims and evaluate the quality of evidence presented by sources. Apply the same scrutiny and skepticism that would be applied in any other news story. Avoid uncritical acceptance of official or expert pronouncements. Be skeptical about all emphatic claims, particularly about claims that an intervention has few or no adverse side effects.
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Strive to include information about cost and insurance coverage in any reporting of new ideas in medicine.
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Ensure that the total news package (headlines, teases, graphics, promotional material) does not oversimplify or misrepresent. Coach editors, photographers, producers, writers, graphic artists and copy editors to embrace these values in their work.
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Consider public interest the primary criterion when choosing which stories to report. Follow up on those stories that serve a wider public interest. In particular, follow up stories on subsequent failures, negative findings or other reversals of fortune for investigational drugs, devices or procedures should receive coverage comparable to that given initial positive reports.
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Distinguish between advocacy and reporting. There are many sides in a health care story. It is not the job of the journalist to take sides, but to present an accurate, balancedand complete report.
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Be original. Plagiarism is untruthful and unacceptable.
INDEPENDENCE We should strive to be independent from the agendas and timetables of journals, advocates, industry and government agencies. We should nourish and encourage original and analytical reporting that provides audiences/readers with context. Given that thousands of journal articles and conference presentations appear each year, and that relatively few are immediately relevant to our audiences/readers, health journalists have a responsibility to be selective so that significant news is not overwhelmed by a blizzard of trivial reports. We are the eyes and ears of our audiences/readers; we must not be mere mouthpieces for industry, government agencies, researchers or health care providers.
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INTEGRITY Those who cover health care will encounter many different interest groups including government, academic medicine and research, medical centers, providers, purchasers, advocacy groups, pharmaceutical companies and device manufacturers. Health care journalists should remember that their loyalties reside with the truth and with the needs of the community. We must: •
Preserve a dispassionate relationship with sources, avoiding conflicts of interest, real or perceived.
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Avoid any personal or financial interest in any company in any field related to what is being covered. This includes actual and potential competitors of subjects about whom we report. It is not wise to own stock in health care companies. We must not profit from, nor allow others to profit from, non-public information, including, but not limited to, results in embargoed journal articles and meeting abstracts.
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Remember that journalists face other potential conflicts of interest. Think about questions such as: Were you a patient at a particular hospital? Do you have a relative with a specific disease that could unduly influence your handling of a story? Does this insurance company cover employees in your newsroom? It is the journalist’s responsibility to recognize these conflicts and prevent them from influencing stories or story choices. The best way to do this is by constant, open and honest discussion with other reporters, editors or producers.
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Deny favored treatment to advertisers and special interests and resist their pressure to influence news coverage.
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Refuse gifts, favors, and special treatment. Refuse meals from drug companies and device manufacturers and refuse to accept unsolicited product samples sent in the mail.
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Weigh the potential benefits involved in accepting fees, honoraria, free travel, paid expenses from organisers of conferences or events against the desire to preserve our credibility with the audience and the need to avoid even the appearance of a conflict of interest.
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Also weigh the potential benefits of accepting awards from organizations sponsored by an entity with a vested interest in health care against our need for credibility.
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Weigh the potential conflict in accepting support from public, private, or foundation sources.
RESPONSIBILITY We must improve our coverage of the structural, institutional, political, financial and ethical issues in health,medicine and health care. We have a responsibility to encourage editors to pay as much attention to health stories as to medical stories. It is our responsibility to understand the difference between the two types of stories and to help our editors maintain an appropriate balance. We know stories on health policy and public health are significant and contribute greatly to public debate. We know they are relevant and important for our readers and viewers. We must work harder to make them interesting. We must work harder within our newsrooms to keep health care coverage comprehensive and proportional. While brevity and immediacy are touchstones of news reporting, health and medical reporting must include sufficient context, background and perspective to be understandable and useful to audiences/readers. Stories that fail to explain how new results or other announcements fit within the broader body of evidence do not serve the interests of the public. Finally, it is our responsibility to lobby our editors to raise the standards of health reporting. Our beats can be viewed as health, medicine, business, health policy, research, science, finance, politics and other specialized areas of news. We must ensure that our beats don’t become so super-specialized that we let important health issues fall through the gaps of our finely defined beats. We must work with editors to ensure that our specialized knowledge, training, expertise and instincts have a voice in the broader editorial decision-making of our publication or broadcast or Web site
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Fantastic Features: A Short Cookbook for Writers ( Based in part on “The Art and Craft of Feature Writing” by William E. Blundell)
A. Why do we tell stories? • To inform • To warn about consequences of actions • To evoke memories • To tell people about people • To connect to our world • To create scenes • To empathize • To entertain B. What Makes A Good Story? • Tension: Conflict, clashes of differing wills, difficulties, inconsistencies – in short, the fault lines of society. Why look for fault lines? • They are the real drivers of the day • Basis for diverse points of view • Shape lives, experience and social tension • They are keys to the future • Examples of Tension • A specific development that threatens to or has split a community e.g. evictions. • A long running battle between interested parties that has affected a community. • Ideas that contrast/conflict with each other • Trends that have uncertain or worrisome implications • Unanswered Questions • Structure • Distinct beginnings and endings: The first impression and the last impression on are crucial. • Narrative/Story arc • How is a character/community changed? • How is the reader changed? A good writer starts where the reader is, and then takes him where the writer wants him to go. C. Information Gathering – As you write a feature story, you should think about, and collect information on: • Theme: What is the point of the story? • Theme: What is my story? Who is it about? What is the point of your story? • What point are you making? • What do you want readers to remember? • Can you summarize it in one sentence? • What headline would you like to see on the story? • What are you looking at? (Overview/case study) •
Why is the Theme So Important? • It helps you concentrate and manage your reporting. • It gives the reader a signpost showing: What to expect, why he should read, why she should care • It ensures your story has impact
•
Scope: How widespread, intense or varied is the development? • Location: What is the physical range of the development, and where are the hot spots? • Diversity/Intensity: In what different ways does the development manifest itself? • Perspective: Do other developments relate to the theme of the story?
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Reasons: Explain WHY the situation you describe has occurred. Types of reasons include • Economic: Follow the money trail. • Social: Are changes in culture, customs, morals or family life affecting the story? • Political/Legal: Are changes in laws, regulations or taxes affecting this story? • Psychological: Does the personality of the major actor bear on the story? Are egos, vengeance, wishfulfillment driving the story?
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History: What happened previously that sheds light on the current situation? History itself may be a REASON why things happened. It also can help us understand how previous attempts to deal with an issue have succeeded or failed.
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Impacts: What are the effects of the phenomenon the story describes? You should describe both how many people are affected and how deeply they are affected. • Who is helped by what is happening? How? • Who is hurt? How? • What is the emotional response of those helped or hurt?
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Countermoves: What is being done about the development? • What impact are the countermoves having? • Are the countermoves having working or are they having unintended results?
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Futures: Where is the development leading? • Are there formal studies or projections that address the future of the development? • What are the opinions of observers or actors on the scene?
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D. Putting it Together: A Few Tips on Writing
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Leads/Intros: The main purpose of the intro or lead is simple: To attract and persuade the reader to go on to the second paragraph. • Catch his attention • Make him care • Keep it simple • Focus • Tips: • Keep it short: No more than two sentences and 60 words. • Be conversational. • Avoid jargon, clichés and abstractions. • Use the present tense. • Use simple, straightforward sentences. Avoid asides or parenthetical statements. •
Does Your Lead Work? Do the paragraphs accurately reflect the theme of your story? If not, start over. • Do you only use words you would use in a normal conversation? If not, replace formal or unnecessary words. • Can you say each paragraph in one breath? If not, shorten what you have written. • Do the words flow smoothly? If not, rewrite the parts where you stumble. • Most important: Will your lead make people want to keep reading? •
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“Nut Paragraph”: More important than the lead, this is a single paragraph (sometimes two) that summarises your story. It tells the reader what point you are making, what to expect and why he should keep reading, listening or watching. BE BRIEF: IF YOU CAN’T SAY IT IN ONE PARAGRAPH, YOU RISK LOSING THE READER AND FAILING TO HAVE AN IMPACT.
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1 •
Building blocks: Once your lead and nut graph are written, you can build your story one section – or block – at a time. Each block has: • A point: Often, the point of each block can be one of the story elements listed above. Theme (Something happened); Impact (Its effects); Reasons (Why it happened); History (What happened concerning this issue in the past); Countermoves (What is being done – or will be done, or should be done – about it); Future (What is the outlook: How things might turn out, what may be the next issue to arise). • Documentation: Facts, examples, statistics that prove the point. Three is the magic number: you usually can support a point with that many pieces of evidence. If you have just two pieces of evidence, people won’t be convinced, but if you give them four or more, they feel you are piling on. • A quotation that drives it home. • Quotations, or sound bites, should be “chewable, not choking.” • They should elicit emotion, advance the story, convey an opinion, provide evidence and advance the story. • But they should be short, memorable and articulate. • They should advance the story, not repeat what already has been said.
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Ending. Good features don’t just trail off or fade away. They have strong, punchy endings that drive the point home, make the story memorable, and reward the reader for staying with the story. Like sunsets, they are inspiring, a chance to think back, and a chance to think about what comes next. Some good approaches to endings: • Give a pithy summary of your point. Try to have some emotional impact. • Go back to the beginning: Remind the reader what you said at the outset. This helps him or her remember the entire story. If you wrote an anecdotal lead, add a new fact about it to remind the reader. If you described a person suffering a particular problem, tell the reader how that person resolved the problem. • One final story: Tell another anecdote that summarises your point. But if you do… • Add a twist: Tell the reader something new that drives home the point.
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Train Yourself: Useful Websites AllAfrica.com: http://allafrica.com. More than 1,000 stories daily, plus more than 900,000 articles in a searchable archive. Association of Health Care Journalists: www.healthjournalism.org. News about training opportunities, tip sheets, reports, studies, newsletters and more. HealthNews Review.org: www.healthnewsreview.org. A nonprofit US organization pursues the “ABCs” of health Journalism – that is, “Accuracy, Balance and Completeness.” Its panel of health experts reviews health-related stories in the American media and rates them according to a variety of criteria. IJ Net (International Journalists Network): www.ijnet.org. Connects journalists with the opportunities and information they need to better themselves and raise journalism standards in their countries. News University: www.newsu.org. A variety of online courses in many aspects of journalism. Science and Development Network (SciDevNet): www.scidev.net. A not-for-profit organisation seeks “to give policymakers, researchers, the media and civil society information and a platform to explore how science and technology can reduce poverty, improve health and raise standards of living around the world.” Uganda Health Communication Alliance: www.healthuganda.org. Newsletters and records from a wide range of healthrelated workshops. Uganda Demographic and Health Survey: http://www.measuredhs.com/pubs/pdf/FR194/FR194.pdf. The best source of data on health conditions in Uganda. Uganda Ministry of Health: http://www.health.go.ug. For ideas about some big improvements planned for hospitals, see: http://www.health.go.ug/index.php?option=com_content&view=article&id=65&Itemid=91 World Federation of Science Journalists – Online Course in Science Journalism: http://www.wfsj.org/course/en/. Selfdirected course in science journalism includes lessons in “Planning and Structuring Your Work,” “Finding and Judging Science Stories,” “The Interview,” “Writing Skills,” “What is Science,” “Reporting Scientific Controversy,” “Reporting on Science Policy” and “How to Shoot Science.” Each lesson includes a lecture, self-teaching questions and assignments.
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Health Policy Reporting
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2
UGANDA
HEALTH SECTOR POLICY OVERVIEW PAPER
MAY 2006
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2 The Ugandan Health Policy Background In the years after independence in 1962-1971, Uganda had the best health indices and the best health care systems in the sub-region. Two decades of civil unrest led to a reversal of the health indices and left the health care system in ruins. Lack of investment in public services and no support from NGOs (except for religious organisations, which remained throughout this period) meant a collapse of most of the health care systems. Health care service provision was highly fragmented and opportunistic. The post-colonial government inherited a colonial structure of district hospitals, mainly run by the Ministry of Health (MoH), health centres that were a mix of government and NGOs (mainly religious charities) and private hospitals run primarily by NGOs either in the capital or in very remote and undeserved parts of Uganda(e.g. northern districts). The colonial infrastructure was heavily based on hospitals. Makarere University was considered to be one of the best in Africa, with a particularly good reputation for training in medicine, nursing and public health. Communicable disease control programmes and research programmes were active, funded by multi-lateral and bi-lateral donors and research organisations in more developed countries. There was great disparity in the distribution of physical health infrastructure left from the colonial period. Colonial administrative centres were very well served by infrastructure, especially in the central, southern and eastern parts of the country. Other areas, especially the north, were undeserved, with much of the population having to travel long distances to seek health care from a ‘western’ medical centre. The post-conflict National Resistance Movement (NRM) government began a period of reconstruction and rehabilitation. The government’s attention was primarily focussed on re-establishing a political and economic environment conducive to growth. The social sector ministries were less of a priority, with no attention given to developing comprehensive health policy for the country. Multi-lateral and bilateral donors began to put increasing levels of resources into the rehabilitation effort. Health care service delivery was a key element of many aid programmes, though this was not mirrored by the development of national health policy, which remained ad hoc and focused on hospital rehabilitation. Numerous vertical programmes were created by various donors to fill the policy vacuum. For most of the late 1980s and 1990s UNICEF was seen as the ‘alternative’ Ministry of Health, due to the amount of national heath policy driven by the UNICEF director. At the time UNICEF’s contribution was seen as very positive as it was supportive of staff development in the MoH while also contributing to much needed public health policy development and implementation.
Since the early 1990s the NRM government has given high priority to the improvement of the health status of all Ugandans. In a number of subsequent policy documents and in successive National development plans, it has set forth that the provision of health services aim at the attainment of a good standard of health by all people in Uganda, in order to promote a healthy productive life.
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2 The policies that the NRM government has pursued over the years have had a direct impact in improving the health status of Ugandans. Although health status remains poor there has been significant improvement between 1991 and 1995, the Infant Mortality Rate has decreased from 127 to 97 per 1000 births, the under 5 Mortality Rate from 203 to 147 per 1000 births. Maternal Mortality is now estimated at 506 per 100,000 live births in 1995 (Source: Uganda Demographic and Health survey 1995, Population Bulletin1997; Population and Housing Survey 1991). Likewise life expectancy which is one the basic indicators of health status have improved substantially. The national health indicators look good but there are significant geographical disparities which need to be addressed in order to achieve equity.
Health Policy Overview The government produced its first three year national health plan in 1993 along with Local Government Statute, and subsequently the Health sector Plan in 2000. All documents outlined plans for decentralising government services to district level, including health services. Cost sharing of health services was introduced, first at the district hospitals and then at the health centres, accompanied by setting up health management committees, that were to include participation from local communities, though user fees were subsequently abolished by the government in 2001. The government has since introduced the National Health Package (NMHP) as it is no longer able to provide unlimited free health care as budgetary allocations are insufficient to meet rising costs. The government has had a health Sector Wide Approach to health care funding and implementation since 2000. The National Health Policy Strategic Plan has been formulated within the context of the provision of the constitution of the Republic Uganda, 1995 and the Local Government Act, 1997 which decentralised government and service delivery. In addition the new Health Policy derives guidance direct from the National Health Sector Reform Programme, and the National Poverty Eradication Programme and Alma Ata Declaration of Health for All (HFA) strategy.
The Policy Framework (National Health Policy) The Ministry of Health policy for 2000/2001 focuses health services that are demonstrably costeffective and have the largest impact on reducing mortality and morbidity. The major contributors to the burden of disease at all levels will be given the highest priority. These include malaria, I/HIV/AIDS, tuberculosis, diarrhoeal diseases, acute lower respiratory tract infections, prenatal and maternal conditions attributable to high fertility and poorly spaced births, vaccine preventable childhood illness, malnutrition, injuries, and physical and mental disability. The cost-effectiveness interventions, which will be implemented in integrated manner to address these priority health problems, will together constitute the Uganda National Minimum Health Care Package. This package reviewed regularly.
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2 Uganda’s Minimum Health Care Package (MHCP) The minimum package comprises of interventions that addresses the major causes of the burden of disease and is the cardinal reference in determining the allocation of public funds and other essential inputs. Government allocates the greater proportion of its budget to the package in such a manner that health spending gradually matches the magnitude of priorities within the Burden of Disease. The Government’s objective is to assure the provision of minimum package of public health and clinical services to all its population, with emphasis on the poor, women and children. The HSSP describes the Minimum Health Care Package and how it will be delivered at the different levels of each health care system. The technical heath care programmes which constitute the Minimum Health Package, cost-effective interventions that are considered to have the highest impact on reducing morbidity and mortality from the major contributors to the to the disease burden using existing resources. The rate of implementation of the National Minimum Health Care Package varies a lot in the country both within regions and within the different levels of the heath care system.
Health Sector Reform, Health Policy and Health Sector Strategic Plan (HSSP) The overall vision of the health HSSP is ensuring quality health services accessible to all Ugandans which are responsive to their needs. The focus is on health services delivery mainly at district level. As part of the Uganda Service Reform Programme, Health sector reform has been going on for several years. Major achievements have been the development of the current National Health Policy published in 1999, and the launching of the Health Sector Strategic plan (HSSP-2000/1 -2004/5) with collaborative effort from other related ministries, development partners and stakeholders. The plan was developed within the framework of the Poverty Eradication Action Plan (PEAP) and the National Health Policy. The overall goal of the plan is to reduce morbidity and mortality from the major causes of ill-health in Uganda and the disparities therein, as a contribution to poverty eradication and economic and social development of the people. Institutional Frameworks, Sector Wide Approach (SWAp) The basis of Uganda’s adoption of the Sector-Wide Approach (SWAp)to health development was to develop a policy with the objectives of providing an enabling environment that would allow for effective coordination of efforts among all partners in Uganda’s national health development; increase efficiency in resource applications; and ensure effective access to essential health care. It especially aims at improving health status and services through a coordinated framework for better use of resources. As part of the reform process government, the MoH introduced a Sector Wide Approach (SWAp) as the guiding principle in health planning and resource mobilisation. Planning and Management of health
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2 services is being done by MoH, together with District, with other ministries and Development Partners (DPs). A Health Coordination mechanism was set up in the form of Health Policy Advisory Committee to standardise and develop a Sector Wide Approach. Besides standardising, this will enable donors to stop supporting projects and instead support government’s priorities through participation in the development of health policy and the strategies for implementation. This would encourage standard approaches for all aspects of finances, management and evaluation. Health Delivery Systems, National Level Health Organisation, and Decentralisation The health care delivery system was reorganised and structured to enhance performance at all levels and support decentralisation and other government reforms. The 1995 constitution and Local Government effectively devolved the responsibility and authority for delivery of health services to the level of the district and other local authorities such as municipalities. The MoH was accordingly re-structured in line with its new constitutional mandate and down seized. Under the 1995 Constitution the MoH is responsible for national planning and policy formulation, setting standards and guidelines, carrying out capacity building and training in the districts and other local government structures, conducting monitoring and evaluation of programmes, and provision of technical support in programme areas and mobilisation for the health sector. Through the decentralisation policy a number of reforms have taken place in the last decade geared towards establishing a single coordinated district health system. The District Local Government Council now have the responsibility to provide health services to their population and whoever is providing health services in the district is doing so on behalf of District Council. To ensure that all health care providers are coordinated and supported is the responsibility of the District Director of Health Services who is the overall in charge of the district health services. He is assisted by a District Team comprising of officers with different competencies. Under the district level is the relatively recent introduction of the Health sub-district (HSD), which now aims to implement provision of integrated health services, leaving the DDHS with management and supervisory role. The HSD’s are functional zones within the district health system. At the subdistrict level, Sub-county Councils are established and operational and are in health matters assisted by a Sub-county Health committee, which has similar role to that of the District Health Committee. The Private Health Sector The private sector in the HSSP is divided three categories; Traditional Practitioners, Non Governmental Organisation (NGOs) and Private Health Care Providers. The NGO group comprises international and national NGOs, religious bureaux, and community self help groups. The religious bureaux are major contributors to the national health care system since they are responsible for 40% coverage of the basic health services and are, in addition, predominantly rural. The HSSP envisages strengthening the partnership already established with NGOs, Traditional Practitioners and Private Health Care Providers.
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2 Result Oriented Management (ROM) The Government has implementing the Result Oriented Management (ROM) across the public service as a means of increasing efficiency and effectiveness of the Ugandan Public service. ROM is an approach to management, which seeks to make best use of resources available by setting clear and attainable objectives. ROM is designed to enable ministries and districts achieve their objectives focussing on key outputs and priorities and providing performance measurement systems. Sector budgets have also been designed on the basis of agreed outputs. In the health sector, the ROM outputs are drawn from the Health Sector Strategic Plan (HSSP). The health sector implemented Result Oriented Management (ROM) during 2001. A set of 20 indicators have been chosen for monitoring performance in delivering the HSSP and annual progress is monitored in the annual Health Sector Performance report. During its second year the HSSP put in place policies, structures and systems for effective implementation. A number of draft policies were successfully developed in the review including: Public-Private Partnership, the Health Financing Strategy, the National Pharmaceutical Sector Strategic Plan, the Procurement Plan, a strategy for inservice training, and addressing pay issues with ministry of public finance. The Health Financing strategy articulates for additional resources if the HSSP is to be successfully implemented. Financing the Health Care Services In line with the Poverty Eradication Action Plan (PEAP), the overarching policy framework for the health sector is the Health Strategic Plan (HSSP), which was launched in August 2000 and implemented during 2001.The HSSP is among other things, designed around a basic minimum health package, which targets cost effective interventions at the heaviest disease burdens. An important implementation problem of HSSP is the chronic and substantial under funding of the health sector. Current Government Budget allocation is only US$5 per capita, representing 10.5% of the Government budget in 2001/02,and donor projects providing additional US$3.This is much lower than the Government commitment to the Abuja Declaration to provide 15% of the Government budget and the HSSP costing US$28 per capita. This costing is comparable to the recent report from the Commission for Macroeconomics for Health, which estimates a minimum funding requirement of US$34 per capita, most of which is financed by individuals as a direct payment to various health care providers. About 50% of the budget goes to service secondary and tertiary health institutions, and less than a third goes to Primary Health Care.
The constrains of meeting Uganda National Minimum Health Care Package Over the past decade and a half considerable effort has been made to restore the functional capacity of the health sector, reactive disease control programmes and re-orient services to Primary Health Care. The positive impact of these measures is evidenced by the fall in infant mortality rates and the rising utilisation of services. patterns in the country.
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2 There is poor access and poor quality of health care sill persist with only 49% of population living within five kilometres or walking distance of a health care facility, and only 42.7% of parishes have some form of health facility (inventory of health in Uganda,2000).Other challenges to implementation of minimum health services and the Minimum Health Care Package programme include inequality due to inefficient allocation of available resources within the sector, with more than 63% of the recurrent budget and 54% of the trained staff concentrated in hospitals (study on health manpower requirement and training priorities in Uganda,1993). Poor distribution of human resources, low staff morale resulting from poor remuneration and over dependence on untrained personnel in primary health facilities, where only 34% of established positions are filled by qualified staff (Ministry of Health inventory, 1999), pose major structural problems to the effective implementation of health programmes. Furthermore a weak management and support/supervision system and inefficient collaboration between public and private sectors, together with inadequate coordination of development partners, have resulted in fewer outcomes than would be expected from available resources.
References: 1. Carl Bro, 2001, An assessment of the Energy Needs and its Contribution to Improved Health Care in Uganda, February 2001. 2. Cindy Carlson, FID Health Systems Resource Centre: Case Study: Review of Health Service Delivery in Uganda-General Country Experience and Northern Uganda, 2004. 3. Ministry of Health.1999.The Health Policy of Uganda, 1999. 4. Ministry of Finance, Planning and Economic Development,2002.Uganda Poverty Strategy Paper Progress Report 2002. 5. Ministry of Health,2001. Annual Health Performance Report 2000/2001. 6. Ministry of Finance, Planning and Economic Development, Summary of Background to the Budget 2001/02.Uganda poverty Reduction strategy Paper progress Report 2002. 7. Dr. Ebanyat, Florence, Challenges in Implementation of Reproductive Health: Experience within a Sector-Wide Approach in Uganda.2002
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2 Major Ugandan Health Policy Documents Constitution of the Republic of Uganda, 1995 (http://www.ugandaembassy.com/Constitution_of_Uganda.pdf) The Government of Uganda has a constitutional obligation to provide basic medical services to its people and promote proper nutrition. The Constitution further provides for all people in Uganda to enjoy rights and opportunities and have access to education, health services and clean and safe water.w National Development Plan (http://www.npa.ug/docs/NDP2.pdf). How Uganda’s government proposes to transform Ugandan society “from a peasant to a modern and prosperous country within 30 years.” National Health Policy ( http://www.health.go.ug/National_Health.pdf) . Based on the National Development Plan, this document spells out Uganda’s major goals for the health sector. It gives a useful overview of the structure of the Ugandan health system and current health conditions in the country. And it spells out the nation’s major health priorities. NHP II focuses on health promotion, disease prevention and early diagnosis and treatment of disease. Health Sector Strategic Plan (http://www.health.go.ug/index.php?option=com_content&view=article&id=61&Itemid=67) Guides health-sector investments by the Ministry of Health, Health Development Partners and other stakeholders for five-year period. This document is a draft of the third five-year plan, which will cover the period from July 2010 to June 2015. Annual Health Sector Performance Reports: http://www.health.go.ug/index.php?option=com_content&view=article&id=62&Itemid=68 Every year the Ministry of Health presents a snapshot describing how well it believes Uganda is doing in meeting its health objectives. Health Systems Strengthening Project http://web.worldbank.org/external/projects/main?Projectid=P115563&theSitePK=40941&piPK=73230&pa gePK=64283627&menuPK=228424. In May 2010, the World Bank approved a $144 million loan (roughly UgShs 288 billion) to Uganda to improve its human resources for health, physical health infrastructure and management leadership and accountability for health services. Uganda Demographic and Health Survey (http://www.measuredhs.com/pubs/pdf/FR194/FR194.pdf). The best data on Uganda’s population and its health status.
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2 Model Health Policy Stories and Sources On the following pages, you will find some useful stories on health policy, including: In 2008, as part of a series of stories about Uganda’s hospital system, Kakaire Kirunda showed that more money wouldn’t solve all of Uganda’s health problems. Better management also is essential. The story helped prompt Uganda’s government to seek World Bank funding that will revamp the country’s hospital system – among other things, by strengthening its management systems. In 2009, Christopher Conte, Knight International Journalism Fellow, described tools reporters and policy-makers can use to measure the cost-effectiveness of different health measures. In 2010, reporter Evelyn Lirri analysed Uganda’s health budget and found that, while the country doesn’t have as much money as it needs to meet all its health goals, it doesn’t even spend the funds it has to the best effect.
Key Internet Sources for Health Policy Reporters Uganda Ministry of Health: http://www.health.go.ug. For ideas about some big improvements planned for hospitals, see: http://www.health.go.ug/index.php?option=com_content&view=article&id=65&Itemid=91 Centers for Disease Control: http://www.cdc.gov/ Uganda Bureau of Statistics: http://www.ubos.org/ Uganda Clinical Guidelines: http://www.health.go.ug/docs/ucg_2010.pdf. Standards of care for Uganda health providers. Uganda Demographic and Health Survey: http://www.measuredhs.com/pubs/pdf/FR194/FR194.pdf. The best source of data on health conditions in Uganda. Uganda Ministry of Health: http://www.health.go.ug. For ideas about some big improvements planned for hospitals, see: http://www.health.go.ug/index.php?option=com_content&view=article&id=65&Itemid=91 UNICEF: http://www.unicef.org/ USAID: http://www.usaid.gov/ World Health Organization: http://www.who.int/en/
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2 June 28, 2008 | SATURDAY MONITOR
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Is funding the answer to health woes? Kakaire Ayoub Kirunda Kampala
Health managers consistently say increased funding would solve the problems afflicting our hospitals and the entire health system, but will money alone bring the improvements everybody agrees are needed? It no doubt would help, but a number of experts say it is no magic bullet. The entire health system also needs better management, they argue. That is not to say that the money problem is insignificant. While the Uganda government says it needs about $28 for every person per year to offer the basic health services (not counting HIV care), actual spending is only $ 8-9, including donor funding. This figure is far less than half of the per capita expenditure recommended by the World Health Organisation, which is $38. But while health systems experts seem to concur that financing is one of the major challenges facing low and middle income countries, they stress another need as well. Writing in the Priorities in Health publication of the Disease Control Priorities Project, experts stated that the challenge of financing is both to mobilise sufficient funds for operating the health system and to apply those funds well. And among those who agree with that assertion is Dr Freddie Ssengooba, a health economist and lecturer at the Makerere University School of Public Health. Money is a big factor in the provision of effective healthcare, he argues, but poor leadership in managing the little resources also needs to be fixed. “The government sends funds, which also include money for hospitals, to the different departments to implement programmes,” Dr Ssengooba said. “But check on the dates for those releases, you will find that the money which is meant for the previous month is released a month late. The fact that that money is released not according to the plans of the hospitals is one of those big challenges. You can never know when money will be released. This affects implementation of programmes.” Dr Ssengooba says research conducted during the last political campaign season of 2005/06 concluded that conditions got worse for hospitals because money was diverted. Health units sometimes went without money from the central government for three consecutive months.
“There was no money flowing to the hospitals, Dr Ssengooba said. “There were no drugs, everything was out of stock. What do you expect under such circumstances? Medics just put off their white coats and go to their clinics, leaving patients to themselves.” Mr James Kubeketerya, the chairman of the Social Services Committee of Parliament which oversees the health sector, has a similar view. “If the Finance Ministry honoured the budgetary allocations to the Health Ministry, it would help a lot,” he said. “The funding gap is always in billions of shillings. The Ministry of Finance needs to appreciate that the health sector is key to the good performance of other sectors. Other sectors require healthy people to keep them going.” Mr Kubeketerya further suggests that the government needs to drop its planned budget cut on the health sector in the near future since it is feared that donor support will go down. The legislator’s views are consistent with the declaration of the first global forum on human resources for health that was held in March at Speke Resort Munyonyo. Among its recommendations, the forum asked governments to increase their own financing of the health workforce, with international institutions relaxing the macroeconomic constraints on their doing so.
Dr Vinand Nantulya, a Ugandan working with the Geveva-based FIND (Foundation for Innovative New Diagnostics) as a senior policy and implementation officer, thinks some policies of the International Monetary Fund are not favourable to health delivery. He proposes drastic changes. He says that the IMF’s fiscal policy that focuses on currency stabilisation through strict control of public expenditures, including freezing staff recruitment into the public health sector as a means of
‘There were no drugs, everything was out of stock. What do you expect under such circumstances? ’ Dr Freddie Ssengoba Health Economist
containing inflation, is quite flawed. “The policy ignores the effect on health and social development,” he said. The small numbers of medics who are employed, he says, are overburdened by work, sometimes compromising quality. “Setting a freeze on staff recruitment at the expense of service delivery sacrifices the health outcomes and long term economic gains of a healthy population at the altar of short term inflationcontaining measures that set single digit inflation as the yard stick for macroeconomic
stability,” he said. Dr Ssengooba, however, acknowledges that the shortage of health workers is a problem, but says it sometimes is exaggerated. “I know workers are few but this is not the biggest problem,” he said. “If you particularly look at doctors and specialists, you will go to this hospital and on the duty sheet you will find a number of doctors but walk into that hospital anytime, you will be lucky to find a doctor. These doctors are on the payroll but they are not on the ground.” The biggest problem, according to Dr Ssengooba, is how to manage resources. While doctors are paid “peanuts”, he said, hospitals do not even get the value of the little they are paid. “If one gets 25 per cent of their earnings from government, at least they should put in 25 per cent of that time in a government facility.” The recent forum on human resources for health also called on countries to create health workforce information systems to improve research and to develop capacity for data management in order to institutionalise evidencebased decision-making and enhance shared learning. A concept paper by the USAID-funded Capacity Project, which is helping poor countries strengthen human resource information systems, shows that decision makers may not know, for example, how many doctors and nurses are being trained and in what
specialties. It further indicates that it may not be known how health sector workers are distributed across urban and rural areas, why health professionals are leaving the health workforce and other critical pieces of information necessary to assemble an effective human resources strategy for health. “Understanding the answers to these and other key policy questions will help decision makers effectively plan to ensure a steady supply of trained health professionals, deploy human resources in the correct positions and locations to meet health care needs and retain health worker skills and experience in the country,” the paper authors wrote. A collaboration between Canada’s International Development Research Centre and the Tanzanian Ministry of Health and Social Work demonstrated that better management can be just as important as more money in improving the capacity of healthcare systems. The project provided local health sector-planning teams in two large Tanzanian districts (Rufiji and Morogoro) with modest funding increases along with tools and strategies that allowed them to target their new resources on the biggest health problems and to improve the efficiency of the health-care delivery system. The result was a large decrease in mortality rates in both districts – particularly
Health Minister Dr Stephen Mallinga (R ) and Japanese Ambassador Ryuzo Kikuchi (L ) soon after jointly inaugurating a newly built and equipped maternity ward at Mbale Regional Hospital last year. The unit was built under a Japanese grant that saw partial equipping and rehabilitation works on several hospitals in six eastern districts. PHOTO BY KAKAIRE KIRUNDA
amongst children, putting them well on their way to reaching the UN Millennium Development Goal (MDG) of reducing child mortality by two-thirds by 2015. The project partners concluded that “extensive experience in the two highly populated Tanzanian districts shows that investing in health systems - to increase the efficiency of health care delivery and to target the most pressing health problems - can lead to impressive results”. They argued that similar improvements could be replicated in other countries. Sector managers in Uganda might want to consider such findings the next time they argue that money alone will solve the problems in this country’s healthcare system. And while Tanzania is on the way to achieving one of the three MDGs that specifically target health, it is not a rosy picture for Uganda if the mid term progress report released by the UNDP last year at the mid-point to 2015 is anything to go by. Writing in the MDGs Uganda’s Progress Report 2007, the UNDP Resident Representative, Mr Theophane Nikyema, said that although the country had made some progress since the last reporting period, “there is still a long way to go if we are to achieve all the goals by 2015 especially the health related goals on child mortality and maternal health”. On MDG no. 4, which aims at reducing by two thirds, between 1990 and 2015, the number of children dying before age five, the verdict is that this target is unlikely to be met. The progress report says the way forward is to quickly boost female education beyond primary level, reduce teenage pregnancies, improve access to quality health services and achieve full vaccination coverage. As for MDG no. 5 which calls for a three-quarter reduction between 1990 and 2005 the maternal mortality ratio, the report card reads the same: unlikely to be met. The report calls for adequate funding and full implementation of the sexual and reproductive health and rights programme. Not all is gloom, however. MDG no. 6, which calls for the combating of HIV/Aids, malaria and other diseases, has already caused some celebration especially as regards HIV/Aids. The target of halting the spread of HIV has been achieved. But some challenges are still in the way regarding malaria and other diseases. akakaire@monitor.co.ug
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2 Measuring Cost-Effectiveness:
A Key to Better Health Policy-Making By Christopher Conte Knight International Journalism Fellow
Just about everyone knows that Uganda has one of the highest maternal mortality rates in the world. So we need to invest more in delivery services, doctors and hospital facilities for mothers. Right? That may seem like the obvious solution, but it actually may not be the best approach. If you take a closer look at the problem, it turns out that some 70% of the pregnant women who are dying are teenagers. We actually may do more to bring down the deplorably high maternal mortality rate by providing adolescents better family planning and other health services. That is the view of Dr. Peter Okwero, senior health specialist for the World Bank. When setting health budget priorities, he says, policy-makers need to consider not just the burden of disease in the country, but the costeffectiveness of strategies to address them – that is, how much suffering we can reduce for each shilling spent on various health care programmes. To do that, we need a common unit of measurement – something that will enable us to compare a shilling spent to treat cancer with one used to combat malaria, for instance. The “disability adjusted life year” (DALY) does just that: It gauges how many years of disability-free life result from different health-care measures. Costeffectiveness can then be measured by comparing the savings in DALYs to the cost of different treatments. The results show a huge difference in the cost effectiveness of various health strategies. Treating latent tuberculosis (cases where a person has contracted tuberculosis but hasn’t yet developed symptoms) costs US$9,450 -16,867 per DALY saved, compared to just US$55-82 to vaccinate a child against tuberculosis. Similarly, coronary artery bypass surgery to treat heart disease costs US$37,000 per DALY saved – much more than the per capita income of most countries. But a polypill, which combines several medications designed to prevent heart disease in the first place, costs just $409. Disease Control Priorities The World Bank reports on the cost effectiveness of countless treatments in a book called “Disease Control Priorities in Developing Countries.” The book and reader-friendly summaries can be found at http://www.dcp2. org/main/Home.html. The book shows that poor countries like Uganda don’t have to wait for economic growth to achieve big gains in health. Some of the “best buys” in health care – policies that achieve the biggest gain in DALYs for a given level of expenditure – are inexpensive and simple. Big health gains gain be achieved, for instance, through routine childhood vaccinations, and child mortality could be cut significantly simply by training mothers and birth attendants to keep newborn babies warm and clean.
Not in Uganda? In Uganda, the application of the costeffectiveness techniques seem not to have had an effect on the priority setting, writes Freddie Ssengooba, Lecturer at the Makerere University School of Public Health. See Uganda’s Minimum
Of course, cost-effectiveness probably cannot – and almost certainly should not – be the only basis for choosing how to invest health-care funds. Fairness also needs to be considered.
Health Care Package: Rationing Within the Minimum?”http://www.enable.nu/ publication/Health_Policy_Overview_ Uganda.pdf
Because people who live in cities are easier to reach, it generally is more cost effective to treat them than widely-scattered people in rural areas. But few people would argue that rural people should be denied services as a result (although in practice, they actually do receive far fewer services, and the higher cost of reaching them is a big part of the reason).
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2 There also are practical considerations. Using DALYs to estimate cost effectiveness only works if countries have reliable data. And even an accurate determination of the most cost-effective health strategies may falter if countries lack the capacity to follow them. Still, Dr. Okwero argued, Uganda needs to start thinking more about such issues. At the moment, he said, there is too much focus on “interventions,” and too little on “strategies”. His presentation offers lessons not only for policy-makers, but for journalists too. When we write about government programmes, do we ask whether they are cost-effective? Do we ask officials to explain why they choose one intervention over another? How closely do we track the government’s decisions about setting priorities in health spending? And when non-government organisations offer us tours to demonstrate their good works, do we ask about the cost of their programmes, or how feasible it would be to bring them to scale? (This article originally appeared on 5 April 2009 in the Uganda Health Reporter: http://www.healthuganda.org/ index.php?option=com_docman&Itemid=127)
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The “Best Buys” in Health Care The World Bank’s Disease Control Priorities Project (DCPP) has identified the following 10 health interventions as the most cost effective (meaning they produce the greatest reduction in death and disability for the amount spent on them): 1.
Vaccinate children against tuberculosis, diphtheria, whooping cough, tetanus, polio and measles.
2.
Monitor children’s health to prevent or treat pneumonia, diarrhea and malaria.
3.
Tax tobacco products to increase consumer costs by at least one third.
4.
Prevent the spread of HIV through coordinated approaches, including condom use, treating other sexually transmitted infections, providing antiretroviral medications to pregnant women, and offering voluntary HIV counseling and testing.
5.
Give children and pregnant women essential nutrients, including Vitamin A, iron and iodine to prevent maternal anemia, infant deaths and long term health problems.
6.
Provide insecticide-treated bed nets, household spraying of insecticides and preventive treatment for pregnant women to reduce malaria in areas where it is endemic.
7.
Enforce traffic regulations and install speed bumps at dangerous intersections.
8.
Treat tuberculosis patients with short-course chemotherapy.
9.
Teach mothers and train birth attendants to keep newborns warm and clean.
10.
Promote use of aspirin and other inexpensive drugs to prevent and treat heart attack and stroke.
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2 Uganda’s health budget: Little money poorly spent The health sector still has funding gaps even though it’s not making the most of the money it has. In our continuing series, Budget Review series, Evelyn Lirri analyses the health budget. By Evelyn Lirri
I
n February, Mr Daniel Tukakundana, joined the agony queue at the Mulago Cancer Institute, the only cancer ward in a country of 32 million. Once a rare disease, cancers of various kinds are as common today as the adage that patients in Uganda go to hospital to die. Mr Tukakundana is one of the 10,000 Ugandans who report suffering from cancer every year. But they are little-noticed by health care managers in the country. Funding – most of it from foreign donors – largely goes to three diseases: HIV/Aids, tuberculosis and malaria. These account for more than 70 Patients in one of the wards at Mulago National Referral Hospital. FILE PHOTO per cent of the country’s health care budget. But ailments like respiratory tract infections, malnutrition, maternal mortality and non communicable diseases like cancer are contributing to a large share of the country’s disease burden. The numbers tell a story we don’t like to face: every day, spending decisions by a host of different players – the national government, local governments, international donors, and millions of Ugandans who pay for their health care with their own money – determine what health services are available and hence who lives and who dies. Yet the different actors often fail to plan or coordinate their spending decisions or to ensure that the money is spent to achieve the greatest impact. As a result, some sectors are flush with cash while others are starved, and evidence is mounting that Ugandans are not getting the greatest value for their money. This inefficiency is undermining gains that could be achieved through substantial increases in spending for the health sector. Money allocated to the health sector has steadily gone up from Shs139.23 billion in 2006/7 to Shs734 billion in 2009/2010. Officials in the Ministry of Health say this total is simply not enough to fund the basic minimum health care package and at the same time hire health workers to deliver these services. Dr Francis Runumi, the chief planner at the ministry, says at least Shs1.5 trillion is required annually to deliver the ideal health services that Ugandans would want to have - roughly twice the amount currently available. Few disagree with Dr Runumi’s point. Public per capita spending on health has been fluctuating. It increased from $8 to $11 from 2001/2 to 2006/7, but reduced to $ 8.4 in 2007/8 and then increased again to $10.4 in the 2008/9 financial year. However, it remains significantly lower than the target of $28 per capita that would be required to provide the Uganda National Minimum Health Care Package – the services Ugandans believe should be available to all.
Average outcomes
But various studies and reports tell a more complicated story. When all sources of funding are counted, they show that Uganda is spending about $25 per capita on health – much closer to the targeted amount. Yet the basic package of health services remains a distant goal.
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2 The Ministry of Finance complains that central administration rather than the actual delivery of health services is claiming a growing share of the country’s health resources. Mr Fred Mutyama, a commissioner for budget in the finance ministry said an assessment of the 2009/10 budget performance shows that at least 7.2 per cent – about Shs1.64 billion of all non wage discretionary expenditure under the ministry of health - is allocated to fuel and lubricants, a reflection of a large fleet management cost. “This is 160 per cent the aggregate allocation to fuel under the other 22 centre votes including 15 referral hospitals,” Mr Mutyama says. Workshops and seminars also account for 7.3 per cent or Shs1.704 billion -- of the health ministry budget. Overall, the Shs22 billion for recurrent expenditure for the ministry is twice the total amount of Shs11.5billion allocated to 15 referral hospitals. A 2010 World Bank study suggests that Uganda could be getting more for the money it is spending. It shows that several countries have achieved better outcomes than Uganda despite spending the same amount or less on health. Madagascar, for instance, spends far less on health than Uganda -- $13 per capita compared to $25 – yet its child mortality rate is about half-that of Uganda. Child and infant mortality in Bangladesh, another country with relatively low total health expenditures per capita, stands at 69 and 52 per 1,000 births respectively, compared to rates of 134 and 78 in Uganda. The target to reduce malaria has not been met. At least 300 people still die of malaria every day - the same number that was dying five years ago. The Ministry of Health just purchased the first phase of 17 million mosquito nets in April and the impact has not been registered yet. The Global Fund to fight HIV/Aids, Malaria and Tuberculosis is funding the mosquito nets programme to a tune of $125 million. Health officials are hopeful that by December 2010, 80 per cent of all homes will own at least one mosquito net - a significant increase from 42 per cent of the population currently owning at least one mosquito net. While the reasons for such disparities are complex and not fully understood, Dr Peter Okwero, one of the authors of the report, says they do suggest that Uganda could do better with the resources it has. “In reality the money is small, but we have failed to be strategic in the way we use these resources,” he suggests. “Policies need to be put in place to utilise the available money effectively.” One reason why Uganda has trouble strategically allocating its resources is because a big part of its budget – about half – is financed by donors who often have different priorities than those of the government. In fact, the government has had a hard time tracking donor money or determining how much is provided compared to what is promised.
Volatile aid
The World Bank’s Public Expenditure Review, completed in 2008 and presented to the Ministry of Finance Budget division, noted the dangers for the health sector in relying heavily on donor aid which the report described as “volatile and unpredictable.” Another report by the Action Group for Health Human Rights and HIV/Aids, which has been tracking donor support to the health sector, also notes that heavy reliance on external aid in the long run “may create a funding gap where donors fail to honour their commitments.” The challenge is compounded by the fact that most donor support is off-budget, with the donors choosing where they want to invest their money. The government doesn’t set the priorities for these projects and it can’t track how much money the donors eventually give from what they have promised. But Ms Ulrika Hertel, the chairperson of the health development partners in Uganda, said only 35 per cent of donor money is off-budget and not targeted towards the Ministry’s Health priorities. Ms Hertel said most of the off-budget spending is chanelled through the local government and non-governmental organisations for projects in specific health interventions like HIV/Aids. She said although the health sector needs additional money to operate, it should be more realistic in spending the money available to it - sometimes even making hard choices on what the money should be spent on. A study that was undertaken in 2008 on behalf of the Ministry of Health illustrates the kind of “hard choices” that would have to be made if the government wanted to get the most benefit out of limited resources.
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2 It says government would for example consider the provision of the health care package at all levels, but delivered through fewer facilities. This would be supported by these few facilities having all the required inputs to operate efficiently like health workers, drugs and equipment. Another consideration would be putting the limited resources to conditions responsible for the highest disease burden and where huge gains can be realised like nutrition, hygiene, and health education. The Ministry of Health says while 75 per cent of diseases could be prevented through health promotion, only about 10 per cent of the available funds are allocated for them. The new National Development Plan hopes to make disease prevention a top priority. “Preventive interventions like immunisation, promotion of sanitation and promotion of nutrition - though cost effective - have not been given adequate attention,” the plan reads in part. For instance, keeping an HIV/Aids patient is more costly than preventing a mother from dying during pregnancy, yet much of the donor funding is directed towards HIV/Aids programmes compared to reproductive health services, despite the fact that on average 14 women will die in Uganda everyday as a result of pregnancy related complications. Dr Runumi said the ministry is discussing with the donors to see whether the ministry and donors can jointly monitor how the funds are allocated and utilised. But supervising donor funds isn’t the government’s only challenge. The government also has no control over the large and growing private sector, even though that’s where most Ugandans get their health care today. The World Bank estimates at least 46 per cent of Ugandans seek health care from private clinics and 13 per cent from a drug shop or pharmacy. That means the private sector dwarfs government health care. Just 22 per cent seek care from government health units, despite the abolition of user fees in government health facilities in 2001. Dr Okwero said most people go to the private health sector because of proximity, but adds that the sector needs to be regulated since it’s a key player in the health delivery chain. “The challenge is when people go to these services; you can’t validate the kind of care that they receive,” he said. Dr Runumi said Ugandans are already paying out of pocket which estimates roughly what government and donors are paying for medical care - about Shs800 billion per year. High absenteeism While experts like Dr Okwero decry the lack of regulation of private providers, others say the government needs to concentrate first on getting its own house in order. Much work is needed. Widespread absenteeism is costing up to Shs26 billion annually, according to the World Bank report. The bank estimates 37 per cent of health workers are absent daily. Dr Runumi acknowledges that absenteeism is a huge challenge but says the issue needs to be tackled cautiously. “You need to understand why people are absent from work. Some have not accessed the payroll much as they have been recruited. Some (are absent) because of the poor leadership and management at the various levels. Others have no medicines and other health supplies to work with. So do you expect them to just keep standing like watchmen in these facilities doing nothing?” he asked. “There are a number of factors we are looking at and they should all be addressed in their own way.” President Museveni has said health workers will get a pay increase in the 2010/11 budget. Significant inefficiencies in procurement, storage and distribution of drugs have also contributed to waste in the sector. Finance Minister Syda Bbumba in her half year budget performance report for 2009/10, said despite stock outs, the National Medical Stores was the top under spender within the sector - with majority of the unspent money accumulated from delays in the provision of health supplies.
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2 But the NMS general manager, Mr Moses Kamabare, said the performance report did not capture all the spending money since NMS usually doesn’t pay its suppliers as soon as they deliver the medicines. The World Bank estimates that leakage of essential medicines results in waste of Shs3billion annually. Finally, the government has compounded its problems through poor planning. Over the past decade, government has focused more on expanding infrastructure by building health facilities that it cannot properly man and equip. The result has been that only half of the total health work force in the country has been filled. National officials acknowledge the massive construction of health facilities has dotted the landscape with white elephants, but they blame districts for putting up health facilities without consulting them. “They build without understanding the recurrent cost implication of their investment, then they throw their whole burden to us the centre to provide the money and health workers for them,” says Dr Runumi. He says the government is drawing a new policy shift that would put construction of health infrastructure under the control of the central administration to reduce on unnecessary costs that come with new structures. The proposed health insurance scheme that would increase the total amount of money for healthcare hasn’t take off because it was widely criticised by the public who believed the health ministry would not run such a huge scheme given its previous record of corruption. So what is the right amount to be spent on health? It’s hard to say. But one thing is clear: While Uganda needs to continue exploring ways of getting more funds to finance the health sector, it may be difficult to achieve that goal unless it shows that it can make better use of the resources it already has. (This article originally appeared on 18 May 2010 in the Daily Monitor: http://www.monitor.co.ug/Business/Business%20 Power/-/688616/919992/-/view/printVersion/-/nntrd1z/-/index.html)
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Corruption and Waste in the Uganda Health Sector
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Fiscal Space for Health in Uganda The World Bank May 2009
Overview
Background and context Stakeholders in the health sector in Uganda argue that fiscal space (the ability of the government to provide more money) for health should be increased to improve health, nutrition and population outcomes. They say that the severe shortage of money for health could partly be resolved if limits on expenditures would be relaxed to accommodate additional external grants particularly as global development aid for health has increased. There are also those who say, however, that there is significant waste of resources in the health sector and that increased funding is not leading to the expected results. Thus, this paper assesses options for increasing health spending and reducing inefficiency in the health sector with a view to improving health, nutrition, and population outcomes. What the health care system looks like The health care system in Uganda is made up of public, private-not-for-profit, and private-for-profit providers as well as traditional and complementary practitioners. The national and regional referral hospitals report to the central government; general hospitals and health centers (types II—IV) report to the local governments. The districts are further divided into health sub districts, which are administered at the health center IV level. The private-not-for-profit providers are predominantly faith-based and are administratively coordinated nationally by the respective bureaus and locally by the diocesan boards. The private-for-profit providers predominantly comprise clinics, but also include drug shops and vendors operating informally. At the top is the Ministry of Health, which is responsible for policy and standards formulation, quality assurance, and resource mobilization. In terms of overall numbers of health facilities, excluding clinics, the public sector dominates: 76 percent of all hospitals, health centers II, III, and IV are government-managed as opposed to the rest which are private and NGO-managed. Although the health infrastructure has expanded, a vast majority of health facilities are not fully functional, lack equipment, staff, and are poorly maintained. For every 100,000 citizens there are 8 physicians, 55 nurses, and 16 midwives. This poor ratio is made worse by mal-distribution. Although hosting only 27 percent of the population, a majority of nurses and physicians work in the central region. The annual training output for doctors and nurses/midwives is estimated to be 170 and 1,600 respectively, just barely sufficient to keep up with population growth and retirement. In addition to having poor infrastructure, most training institutions lack qualified tutors. Aims of the health plan The goal for health in Uganda is to reduce morbidity and mortality from major causes of illness and also reduce differences in health status through the delivery of an essential health care package. The main health objective is to reduce the disease burden from major communicable diseases and maternal and childhood illnesses by raising money and improving efficiency; recruitment and better deployment of health workers; improving supply, distribution and balanced use of essential drugs; increasing access; implementing the health sub district concept; strengthening public-private partnerships for health; and improving environmental health and sanitation. Implementation of most of the above elements, together with abolition of user fees from public health facilities in 2001, partly led to improved access and increased use of health services. The trends are captured in table 1. The speed of reform, however, has slowed down. The health sub district concept which underpinned the reform agenda, for example, is only partly implemented.
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3 Table 1. Trends in Health (Poverty Eradication Action Plan) Indicators (2000/01–2008/09) Indicator 00/01 01/02 02/03 03/04 04/05 05/06 06/07 07/08
08/09
Pop coverage 5 km radius
57%
n.a.
n.a.
72%
72%
72%
n.a.
75%
Outpatient Utilization
0.43
0.60
0.72
0.79
0.9
0.9
0.9
0.9
0.8
DPT Vaccine Coverage
48%
63%
84.1%
83 %
89%
89%
87%
90%
85%
Deliveries in Facilities
22.6
19%
20.3 %
24.4 %
25%
29%
32%
40%
41%
% Qualified Workers
40%
42%
56%
68%
68%
n.a.
68%
*51%
53%
HIV– Prevalence
6.1%
6.5%
6.2%
n.a.
6.4%
n.a.
6.4%
7.4%
n.a.
HCs without drug stock-outs n.a.
n.a.
33%
40%
35%
27%
35%
28%
26%
Latrine Coverage
n.a.
n.a.
55.6%
55.9%
57%
58%
58.5%
63%
64%
Couple Years of Protection
n.a.
n.a.
210,839 212,089 234,259 309,757 357,021 361,080 549,594
Coverage IPT
8.6%
n.a.
20%
27%
34%
37%
42%
46%
47%
Household with Nets
17.6%
n.a.
n.a.
15%
25.9%
34%
n.a.
n.a.
40%
TB Cure Rate
50%
52%
60%
65%
67%
70.5%
n.a.
68.4%
75.1%
Source: Ministry of Health. Annual Health Sector Performance Report 2006/07, 2007/0 and draft report 2008/098. Notes: * The staffing norms were changed. n.a.—Not available. DPT—includes pentavalent vaccine for children IPT—intermittent prophylaxis treatment given to pregnant mothers to prevent malaria HC—Health Centers TB—Tuberculosis
Uganda needs about US$28 per person (the World Health Organization [WHO] recommends US$34) to finance its health strategy, but it has only been able to raise US$7–9 per person. The under-funding and limited allocation flexibility because of earmarked external money and conditional grant transfers by the central government imply that funding of important programs continues to be constrained. Health, Nutrition, and Population Outcomes Health status Uganda’s life expectancy was about 51 years in 2006, slightly higher than the average of 50.5 years for subSaharan African countries. Life expectancy—which had been declining since the 1970s as a result of civil strife and HIV/AIDS—has been improving steadily since the late 1990s encouraged by fairly strong economic growth. Trends are captured in figure 1. Figure 1. Trends in Life Expectancy and Income in Uganda, 1960–2006
Source: WDI.
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Following a period of interruption in the 1970s, the number of children dying before their fifth birthday (underfive mortality) and those dying at an even younger (infant) age has been declining, although slowly. Under-five mortality rate was 134 and infant mortality rate was 78 per 1,000 live births in 2006. The country is off-track with regard to the fourth Millennium Development Goal (MDG) calling for a two-thirds reduction in under-five mortality over the period 1990–2015. Estimates indicate a maternal mortality (mothers who die as a result of complications related to pregnancy and delivery) ratio of 435 per 100,000 live births, slightly lower than the 1990s figures. The MDG target for Uganda is 131 deaths per 100,000 live births by 2015. Poor access to good maternal care services, particularly emergency obstetric care, is a significant barrier to reducing maternal deaths. Disease burden in Uganda Communicable diseases account for a large proportion of deaths in Uganda as can be seen in table 2. Malaria is the most common cause of death among children below age five, and pneumonia and meningitis have become major causes of deaths in that age group in the last five years. Table 2. Major Causes of Death and Disease Burden in Uganda, 2002 Disease/condition
Percentage of overall deaths
Percentage of overall DALYs* lost
HIV/AIDS
24
20
Malaria
10
11
Respiratory infections
10
10
Diarrheal diseases
8
7
Childhood-cluster diseases
5
6
Tuberculosis
4
3
Maternal conditions
2
3
Nutritional deficiencies
1
3
Source: WHO *DALYs—disability-adjusted life years are a metric for combining healthy time loss from morbidity as well as premature mortality
Population and fertility Uganda has the third highest fertility rate (the total number of pregnancies a woman will have in her lifetime) in the world. In 2006, total fertility rate was 6.7 births per woman (although a recent slight decline to 6.5 has been noticed). The average for sub-Saharan Africa in 2005 was 4.9. Uganda’s high rate correlates with its relatively high infant and maternal deaths. With over half of the population under 15 years of age, Uganda has one of the youngest populations in the world, placing a large burden on child and adolescent health care services.
Performance of the Health Sector Use of health services Health care use is dominated by the private sector. In 2006, nearly half of those that needed and sought health care did so in a private clinic, followed by about 22 percent that sought care in a government health unit, and 13 percent in a drug store/pharmacy. Others sought care in a government hospital, an NGO health unit, and an NGO hospital—in that order. Overall use of health care facilities—including use of public and private health facilities as well as pharmacies and traditional healers—rose from below 60 percent in 1996 to almost 88 percent in 2006. Government facility utilization rates have increased since the abolition of user fees in 2001. Somewhat surprisingly, private utilization also increased following the abolition of user fees at the government facilities. Maternal health In terms of maternal health, progress has not been as good as expected yet maternal mortality is a good indicator of a functioning health system. Skilled birth attendance—an important factor for maternal health—has been fairly stagnant at around 42 percent, lower than the average for sub-Saharan Africa. The contraceptive prevalence rate of 24 percent is on the lower side as well in relation to countries comparable to Uganda. Access and availability of health care services: A very large number of health facilities provide a basic package of health services such as curative care for children, sexually transmitted infections services, family planning, antenatal care, and child immunization. While services may be reported to be available, the ability to access them is not good enough partly because of lack of money to pay for treatment, distance to health unit, and concern over availability of medications.
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3 Communicable diseases Malaria is highly endemic in Uganda, with most people being exposed to high transmission levels and 25 percent to moderate transmission levels. In 2005-2006, half of the people who fell sick reported malaria or fever as their major reason for being ill. Yet less than half of the households have a mosquito net. Given the high HIV/ AIDS prevalence rate (6.4 percent), the services available for prevention and treatment are relatively limited. Far fewer health facilities have an HIV/AIDS testing facility. Private health centers are more likely to have a testing facility than public ones. Quite clearly, while Uganda is making progress against communicable diseases, there is still a long way to go. Health Spending in Uganda Based on WHO estimates, Uganda’s total health expenditure per person was about US$25 in 2006. This was slightly higher than the average for sub-Saharan Africa, but slightly lower than that for all low-income countries. Health spending per person in Uganda, however, is slightly higher than average for its income level as can be seen in table 3. Table 3. Health Expenditure Indicators in Uganda and Selected Comparator Countries, 2006 Country/ Region
GNI per capita (US$)
Total health expenditure per capita (US$)
Bangladesh
$450
$13
3.1
36.8
7.4
Cambodia
$490
$30
6.0
26.1
10.7
Cameroon
$990
$51
5.2
28.1
8.6
Ethiopia
$170
$7
4.9
60.4
10.6
Ghana
$510
$35
6.2
36.5
6.8
India
$820
$39
4.9
19.6
3.4
Kenya
$580
$29
4.6
48.2
6.1
Lao PDR
$500
$22
3.6
20.8
4.1
Madagascar
$280
$9
3.3
63.9
9.6
Nepal
$320
$17
5.7
30.5
9.2
Senegal
$760
$40
5.4
31.5
6.7
Tanzania
$350
$18
5.5
59.2
13.3
Uganda
$300
$25
7.2
26.9
10.0
Vietnam
$700
$46
6.6
32.4
6.8
Zambia
$630
$49
5.2
46.8
10.8
Sub-Saharan Africa $466
$24
4.8
43.9
8.3
Low-Income
$27
4.6
28.2
5.2
$591
Total health expenditure (% of GDP)
Govt health expenditure (% of total health expenditure)
Govt health expenditure (% of overall govt budget)
Source: WDI & WHO.
While there was growth in the health budget in the 1990s, it has since stagnated. For example, excluding donor projects, the health budget as a percentage of the government budget increased from 7 percent in 1997/98 to 10 percent in 2002/03 and has remained at this level. In real terms, government health spending per person in 2006 was less than in 2000. There has been an increase in the share of the health budget going towards district health services with a concurrent decline in the share going to Ministry of Health headquarters. Notwithstanding the shift of money to the district level, non-wage recurrent spending is declining as a share of government health spending with spending on wages outstripping it. As a result the government’s ability to fund its operations is being constrained.
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3 External funding for health in Uganda Nearly 29 percent of total health spending in 2006 was funded by external sources. External funding in Uganda was much higher than the average for sub-Saharan Africa and for low-income countries in general. Government spending figures include external funding channeled through budget support, so that in practice donor funding exceeded funding by the government from its own revenue base. Drivers for Increased Spending in the Health Sector Uganda is under pressure to spend more money on the health sector as a result of several factors, which could be described as drivers of expenditure increase. Growing population The high population growth rate will continue to drive health spending upward thus putting more pressure on maternal, child health, and adolescent services. Service standards, norms, and technologies Introduction of health sub district concept—with the expectation of bringing essential services such as basic surgical and emergency obstetric care closer to the community—has created huge financial implications in terms of staffing, equipment, infrastructure, and operating costs. The need to adopt more effective, but expensive, health technologies and service standards has also added to expenses. Rising unit cost of treatment The unit costs of existing services are shooting up due to inflation, rising operational costs, and increasing resistance to current treatment regimens necessitating changing to other effective but more expensive ones. HIV/AIDS HIV/AIDS is probably the number one driver of spending in the health sector. About 70 percent of the money Uganda is raising for HIV/AIDS goes towards health response. Without strengthening prevention, however, the country’s efforts are likely to be unsustainable. Waste in the Health Sector This is caused by inadequacies in human resource management and improvement in the area could help save money. Absenteeism, where on a given day 37 percent of health workers skip work, is costing the government about U Sh26 billion annually. In FY2005/06, approximately U Sh36 billion or 13 percent of health sector spending was lost to waste. Waste can be in the form of leakages of money before reaching the designated spending entity or when expenditures take place in breach of government financial and procurement regulations. For example, 14 percent of the district primary health care grant from the Ministry of Finance does not reach the lower level spending entities. There is also waste and leakage in the pharmaceutical sub-sector through drug theft, expiry, and poor prescription practices. Constraints for the Health Sector Overall fiscal space may be generated by raising revenues, increasing sovereign debt, acceptance of higher levels of development assistance, and from increasing efficiency and reducing waste. There are, however, limits to fiscal space for health. However much money is raised, efficiency cannot be increased indefinitely and neither can waste be reduced to less than zero. One has, therefore, to take care not to undermine other goals in the sector and the economy. Available evidence suggests that limited opportunities exist to mobilize new substantial financing. In the short-term, increases in government health spending will mainly come from endogenous budgetary increases and development assistance. Nominal total government health spending and government per capita health expenditure are expected to triple and double, respectively, increasing the percentage of GDP spent on health from 3.13 percent to 4.08 percent over the period 2007–15. The impact of Uganda’s high population growth rate mitigates the projected effect in per capita terms.
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conclusion, for Uganda to accelerate progress towards achieving health MDG and service delivery targets, 3 Init needs to eliminate waste in the use of existing resources and ensure a more efficient and equitable allocation of resources. Recommendations Uganda can reap significant savings by improving management of human resources for health; strengthening procurement and logistics management for medicines and medical supplies; and by better programming of development assistance for health. Besides, Uganda needs to take proactive steps to mitigate growing pressure to increase health spending. Improve management and performance of workers Address delays in recruitment, payroll entry, confirmation, and promotion of staff; institute measures to attract and retain staff especially in rural and remote areas possibly starting with rolling out the hard-to-reach allowance scheme already approved by the government plus provision of institutional accommodation; align sector performance to outputs/results by changing from paying for inputs to paying for defined outputs and providing more autonomy to health managers who will be accountable for the agreed results/outputs; and correct salary differences between private-not-for-profit and public health workers to avoid loss of private workers to the government side. Drug procurement and logistics management There is need to (a) harmonize procurement of third party commodities; (b) clarify and agree roles of the main players involved in drug procurement and logistics management; (c) review the various laws with a bearing on procurement to reduce procurement restrictions imposed on National Medical Stores and ensure it becomes competitive in the liberalized environment; and (d) review the financing of the drugs to avoid duplication and institute a performance contract between National Medical Stores and the Ministry of Health. Better program development assistance for health Uganda derives a large proportion of its health financing from external sources and will continue to rely on development assistance for health. Given challenges of predictability, contingency liability, and the need to align development assistance for health to national priorities, Uganda needs to establish a system to capture, plan, and monitor external funding irrespective of whether the support is on or off-budget. Reducing the growing pressure to increase spending
Reinvigorate HIV/AIDS prevention efforts because Uganda cannot treat itself out of the epidemic; consider financial implications in setting sector standards and norms, especially when adopting new interventions; periodically monitor the unit cost of selected essential health services, for example treating one patient over a year with AIDS drugs, or fully immunizing a child; develop a policy to guide construction, expansion and maintenance of public health facilities; expand family planning services; and study and adopt global initiatives with potential to reduce costs for health care. General Recommendations The overall health sector budgetary process could benefit from a number of actions including reducing earmarking and giving more flexibility to spending entities; improving the recording and monitoring of donor expenditures; linking budgets to sector programs and outputs; and improving overall financial management in the sector. Develop a governance and anti-corruption strategy.
Develop an appropriate health funding strategy: Such as strategy would discuss, among others, (a) appropriateness of payroll tax-based financing and social health insurance; (b) role government or (on-budget) donor funds would play in a health insurance-type approach; (c) how health services would be financed; and (d) the place for out-of-pocket payments in the overall financing framework.
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3
Additional Reading on Corruption Covering Corruption: The Difficulties of Making a Difference: (http://cima.ned.org/sites/default/files/CIMA-Covering_Corruption-Report_0.pdf. The Center for International Media Assistance (CIMA) at the National Endowment for Democracy commissioned this study of the effect of news coverage of corruption on the incidence and prevalence of corruption worldwide. First Annual Report on Corruption in Uganda: http://www.eprc.or.ug/pdf_files/corruptiontrends.pdf. With support from the World Bank and the Department of International Development in the UK and technical assistance from the Economic Policy Research Centre in Uganda, the Inspectorate of Government produced this first report that uses a new data-tracking mechanism to measure the extent of corruption in Uganda and track whether the country is making progress in dealing with the problem. Forum for African Investigative Reporters (www.fairreporters.org): This pan-African network of investigative journalists maintains a resource centre, career toolbox and investigative journalism manuals. FAIR provides funding and technical support for journalists pursuing investigative projects.
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4 Steps in Health Journalism Emilio Ovuga Dean, Gulu University Faculty of Medicine
The sources of information in health journalism include health-care providers, members of the general public, community leaders, political leaders in the district, and health managers at the Ministry of Health Headquarters. In interviewing these persons, the journalist should go through the following set of themes: Define the problem or issue simply to enable the lay person and or other stakeholder understand the nature of the problem. Determine the magnitude of the problem in terms of numbers of affected persons per 100; 1,000; 10,000; or 100,000 of the general population. Another way to express this would be in terms of the economic cost of the problem to individuals, their families or the taxpayer, or the number of lives lost as a result of the health problem as has been done in case of Ebola and HEV epidemics. Emilio Ovuga
Describe how the health problem is caused. This is sometimes not straightforward; consider the case of mental disorders. However, a simple description of current knowledge about causes might be useful; a useful source of information is health experts. Describe how the problem is maintained in individuals and at population level. Good examples include mental illness, schistosomiasis, river blindness and sleeping sickness, the maintenance all of which are closely linked to the nature and quality of environment from which patients come. Describe how the condition might be recognized at household level or among acquaintances. Examples include plague, meningitis, diarrhoea and mental sickness. Define what the public thinks or knows about the problem. Identify current or available treatment to cure, control or halt the spread of the problem. Define known measures that are used in preventing the condition. Suggest what the community could do to prevent and control the problem and stay well. Identify relevant policy issues that need to be addressed at local, national, regional and or international levels. In writing health feature articles, the health reporter should avoid personal opinion other than providing objective analysis of the current state of affairs. When in doubt, it is often safer to present the facts as derived from investigative procedures prior to printing. Useful sources of information are a) the lay public b) health experts and c) medical literature
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4 Resources on Community Health Uganda Ministry of Health: Community Health Promotion Handbook (available online at www. healthuganda.org. Click on “Health Topics”). Uganda Ministry of Health: Village Health Team Handbook Hesperian Foundation: “Where there is No Doctor” (www.hesperian.org/index.php). This book, produced by a non-profit publisher of books and newsletters for community-based health care. Its flagship publication, which can be downloaded and republished for free, includes chapters on Home Cures and Popular Beliefs, Sicknesses that are Often Confused, How to Examine a Sick Person, How to Take Care of a Sick Person, Healing Without Medicines, Right and Wrong Use of Modern Medicines, Antibiotics: What They Are and How To Use Them, How To Measure and Give Medicine, Instructions and Precautions for Injections, First Aid, Nutrition: What to Eat to Be Healthy, Prevention: How to Avoid Many Sicknesses, Some Very Common Sicknesses, Serious Illnesses That Need Special Medical Attention, Skin Problems, The Eyes, The Teeth, Gums, and Mouth, The Urinary System and the Genitals, Information for Mothers and Midwives, Family Planning- Having the Number of Children You Want, Health and Sicknesses of Children, Health and Sicknesses of Older People, The Medicine Kit, and The Uses, Dosage, and Precautions for Medicines. Other books published by Hesperian include: • A Community Guide to Environmental Health • Where Women Have No Doctor • A Book for Midwives • A Health Handbook for Women with Disabilities • Disabled Village Children • HIV Health and Your Community • Helping Children Who Are Deaf • Helping Children Who Are Blind • A Worker’s Guide to Health and Safety • Cholera Prevention Fact Sheet • Sanitation and Cleanliness for a Healthy Environment • Water for life • Where There Is No Dentist Uganda Clinical Guidelines: http://www.health.go.ug/docs/ucg_2010.pdf. Standards of care in the Uganda health system
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4 Using the Internet to Improve Accuracy of Health Reporting By Christopher Conte Knight International Journalism Fellow
“There’s no such thing as a stupid question.” Right? Wrong! This phrase is often used to encourage people to avoid letting fear of embarrassment get in the way of learning. That’s good advice in most cases. But sometimes a stupid question can hurt a reporter’s chances of getting the right information. Health experts are busy and they often don’t trust reporters. If you don’t know the basics, they may decide it will take too much time to bring you up to speed, or they will conclude that you won’t get the technical issues right. The solution? A little basic research can go a long in showing sources that you are serious and that you will be able to put what they tell you to good use. Here’s how. MedlinePlus: Getting Started
This user-friendly website, which is maintained by the National Library of Medicine in the US, is widely recognized as a reliable source of basic health information. In one recent three-month period, it had 37.7 million visitors, who looked up a total of 179 million pages. That should come as no surprise: the Medline Plus database includes information provided by more than 1,000 organizations, all of it vetted for scientific accuracy and all presented in language that everyday people can understand. From the Medline home page (www.medlineplus.gov), you can click on “Health Topics” to search for a particular disease or condition. Topics also are listed by body location or system (such as “Eyes and Vision,”), type of therapy (“Surgery and Rehabilitation”), population group (Seniors’ health) and by health and wellness issues (“Safety”). Health topics are all arranged the same way: They start with a brief description of the disease or condition, then proceed to expanded overviews under “Start Here.” Usually, you get through these overviews with about five minutes of reading or less. But that is enough to give you basic background. But you can delve deeper: Health Topic pages sort information into different categories: • • • • • •
“Basics”: Overviews, Latest News, Diagnosis/Symptoms, Treatment, Prevention/Screening “Learn More”: Specific Conditions, Related Issues “Multimedia and Cool Tools”: Health-check tools, interactive tutorials, videos. “Research”: the latest clinical trials and journal articles “Reference Shelf”: Encyclopedia and dictionary entries, organizations, statistics “For you”: Information designed to be useful for specific groups.
What if Medline Plus doesn’t have the information you need? Although MedlinePlus is an impressive database, it is geared more to the interests and concerns of North Americans than to Africans. While it has a great deal of information on “lifestyle diseases” more common in that part of the world, its coverage of afflictions more common in Eastern Africa – like sleeping sickness or jiggers, for instance – is much less extensive. A number of websites can help fill the gap, including:
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4 World Health Organization: http://www.who.int/en/. A wealth of information collected by country, health topic, publication, data and statistics and programmes and projects. WHO covers tropical health problems extensively, and is an excellent source of information. African Index Medicus: http://indexmedicus.afro.who.int/. In order to give access to information published in or related to Africa and to encourage local publishing, the World Health Organization, in collaboration with the Association for Health Information and Libraries in Africa (AHILA), has produced an international index to African health literature and information sources. What about Google and Wikipedia? We all use them, but there are some risks. Unlike the websites named above, these websites were not vetted by health experts. As a result, while they can lead us to invaluable information, they also can mislead us to information that is inaccurate or that doesn’t reflect the latest research or best thinking on health topics. There are ways to sift through the vast store of information they provide to find information that is reliable. The “MedlinePlus Guide to Healthy Web Surfing” (www.nlm.nih.gov/medlineplus/healthywebsurfing.html) shows how to judge the reliability of health web sites. Much of the same information can be found http://www.nlm.nih.gov/medlineplus/webeval/webeval_start. html. Among its tips are: Consider the source--Use recognized authorities. Know who is responsible for the content. • Look for an “about us” page. Check to see who runs the site: is it a branch of the Federal Government, a non-profit institution, a professional organization, a health system, a commercial organization or an individual. • There is a big difference between a site that says, “I developed this site after my heart attack” and one that says, “This page on heart attack was developed by health professionals at the American Heart Association.” • Web sites should have a way to contact the organization or webmaster. If the site provides no contact information, or if you can’t easily find out who runs the site, use caution. Focus on quality--All Web sites are not created equal. Does the site have an editorial board? Is the information reviewed before it is posted? • This information is often on the “about us” page, or it may be under the organization’s mission statement, or part of the annual report. • See if the board members are experts in the subject of the site. For example, a site on osteoporosis whose medical advisory board is composed of attorneys and accountants is not medically authoritative. • Look for a description of the process of selecting or approving information on the site. It is usually in the “about us” section and may be called “editorial policy” or “selection policy” or “review policy.” • Sometimes the site will have information “about our writers” or “about our authors” instead of an editorial policy. Review this section to find out who has written the information. Be a cyberskeptic--Quackery abounds on the Web Does the site make health claims that seem too good to be true? Does the information use deliberately obscure, “scientific” sounding language? Does it promise quick, dramatic, miraculous results? Is this the only site making these claims? • Beware of claims that one remedy will cure a variety of illnesses, that it is a “breakthrough,” or that it relies on a “secret ingredient.” • Use caution if the site uses a sensational writing style (lots of exclamation points, for example.) • A health Web site for consumers should use simple language, not technical jargon. • Get a second opinion! Check more than one site.
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4 Look for the evidence--Rely on medical research, not opinion Does the site identify the author? Does it rely on testimonials? • Look for the author of the information, either an individual or an organization. Good examples are “Written by Jane Smith, R.N.,” or “Copyright 2003, American Cancer Society.” • If there are case histories or testimonials on the Web site, look for contact information such as an email address or telephone number. If the testimonials are anonymous or hard to track down (“Jane from California”), use caution. Check for currency--Look for the latest information Is the information current? •
•
Look for dates on documents. A document on coping with the loss of a loved one doesn’t need to be current, but a document on the latest treatment of AIDS needs to be current. Click on a few links on the site. If there are a lot of broken links, the site may not be kept up-to-date.
Beware of bias--What is the purpose? Who is providing the funding? Who pays for the site? •
• •
Check to see if the site is supported by public funds, donations or by commercial advertising. Advertisements should be labeled. They should say “Advertisement” or “From our Sponsor.” Look at a page on the site, and see if it is clear when content is coming from a non-commercial source and when an advertiser provides it. For example, if a page about treatment of depression recommends one drug by name, see if you can tell if the company that manufactures the drug provides that information. If it does, you should consult other sources to see what they say about the same drug.
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Reporting on Medical Care and Health Research
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5 Makerere University Releases Report on Uganda Media Coverage of Health Research Issues By Esther Nakkazi
The Uganda media could be saturated with heath system issues, but their content minimally refers to research, keeping researchers’ findings on the shelves. A study titled ‘From Paper to Mike: An analysis of Health Systems Reporting In Uganda’s Print and Radio Media,’ revealed that health systems researchers’ voices and their findings were missing in the articles. “There seems to be limited interaction between researchers and the media. I am aware that so much research is done but very little is reported in the media and this suggests for a closer working relationship between the media and heath researchers,” said Dr. Anne Katahoire, the principal investigator of the research study. The study was conducted between March and June 2010 by a multidisciplinary team from the media and academia. It was led by Makerere University and funded by Research Matters, a collaboration between the Swiss Agency for Development and Cooperation (SDC) and the International Development Research Centre (IDRC). Nasreen Jessani, IDRC’s Health Program Officer for East and Southern Africa, stressed that “With increasing attention being paid to evidence informed decision-making, it is critical to recognize the role of the media as a ‘broker’ between researchers and decision-makers as well as between researchers and the general public.” “In Uganda, we need to better understand the context within which researchers, decision-makers and media are interacting so as to better plan for enhanced use of new knowledge in policy and practice,” said Ms. Jessani. The team analyzed more than 100 newspaper articles from four local newspapers and 72 radio programmes covering the four regions of Uganda. In-depth interviews with health researchers, reporters, editors, and radio health program presenters and producers were also conducted. The research explored the coverage of health issues in the media paying attention to the extent to which journalists used research-based evidence and the processes through which research gets or does not get into published articles in the newspapers and health programmes on radio. The study, like no other done in this area, paid particular attention to the background training and orientation of the reporters behind the stories. All the newspapers reviewed had health magazines pull-outs, and the radio stations aired health-related programs at least two to three times a week, a fact that demonstrated substantial coverage of health. The researchers adopted the World Health Organization’s health systems definition, as “consisting of all the people and actions whose primary purpose is to promote, restore or maintain health.” This includes formal health services, actions by traditional healers, and all use of medication, whether or not prescribed by providers. The study also looked at home care of the sick; traditional public health activities like health promotion and disease prevention, and other health enhancing interventions like road and environmental safety improvement. The articles identified in each of the newspapers were classified under these categories. The study found that the majority of health system articles were on disease prevention and health promotion, while the articles on the formal health services mostly involved criticism of what was happening in the formal health services in the country. Of all the published articles reviewed, almost none were based on health systems research in Uganda. Those that did refer to some research reports generally cited research that was not conducted in Uganda.
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5 In broadcasting media, radio programs on health were largely driven and sustained by sponsors (commercial or institutional) who determined the topics. These stories were largely skewed toward prevention of the well funded diseases like HIV/AIDS and malaria. Ideally, health programs on radio would be driven by communities’ health needs or the professional choices of the producers or presenters. But most of the program presenters were also not trained, noted the study. The newspaper articles covered a larger spectrum of health issues relative to radio. Newspaper articles were largely driven by community questions. Where reporters and editors featured a particular health topic, they were driven by what they had either experienced in their own interaction with health system or that of someone they knew. The study was premised on the assumption that the media, an important stakeholder in health systems research could potentially influence policy and public attitudes through its role of sensitization and publicity. Recommendations “Both the media and the health researchers need to work on their attitudes towards each other. The media portrays researchers as exploitative and as using people as guinea pigs while health researchers have a dismissive attitude towards the media,” said the study. “Our team found that there are different efforts towards this cause but more needs to be done. Researchers need to recognize that the media is an important stakeholder in research,” said Dr. Katahoire. jThis entails a need for communication budgets in research, engagement of the media in the research process and more face-to-face interactions between the journalists and health researchers. But also, health research funders need to devote funds for communicating the research findings to the public. If this were done it would improve the links between the media and researchers as well as media reporting of health research, according to the research team. “This is a strategy that has been recognized and supported by many funders but requires buy-in and mutual trust from a number of players” asserted Ms. Jessani. “In addition, in requires a new cadre of professionals – one that straddles the worlds of research and the worlds of communication. Funding communication is necessary but not entirely sufficient. Adequate skills are required that allow for the distillation and repackaging of research results into different forms for different audiences.” The research team included Dr. Anne Ruhweza Katahoire the director, Child Health and Development Centre, School of Medicine College of Health Sciences, Makerere University; Doris Kwesiga a researcher with Makerere University; Esther Nakkazi a freelance science journalist; and Hannington Muyenje the outgoing Country Project Director, BBC world Service Trust in Uganda.
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Why Simple Scientific Data is hard to come by Jennifer Bakyawa, Project Officer, Communication, Council on Health Research for Development
Nairobi — Dr Mohammed Lamorde was anxious to have the survey results quickly translated and disseminated to the traditional medical practitioners who had been part of his research. As lead researcher in the Ethnobotanical Survey of Traditional Medicines Commonly Used in HIV/Aids in Four Ugandan Districts, Dr Lamorde had carried out surveys in Kamuli, Gulu, Sembabule and Kabale districts in 2008, interacting with traditional healers. And much as the traditional healers were simple folk, he felt an obligation to keep them abreast of his findings. “Even if the results are only about plants the herbalists use in treating HIV opportunistic infections, they should know. We promised them to return. That is a promise I intend to keep,” he said. Few researchers are as zealous as Dr Lamorde about disseminating research results to the study communities. Often, community involvement in research ends with data collection. Once the data has been gathered, a researcher has the prerogative to use the results as he deems fit. On several occasions, Ugandan research has been presented at international conferences long before Ugandans were aware of it. Prof Nelson Sewankambo, the Acting Principal of Makerere University College of Health Sciences, says researchers do not see research translation as their responsibility. “Once published in research journals, researchers think it is the responsibility of somebody else to pick the research results and see that it leads to development.” Prof Sewankambo says there is a need for platforms and mechanisms where research issues are discussed. Such discussions should involve public demonstration programmes on linking research to development. “There is no forum for the public to discuss how or what they consume came about, yet our daily lives are full of research. The public is a consumer of research but it does not ask how research is conducted,” says Dr Edward Katongole Mbidde, former director of the Uganda Virus Research Institute. At the African Ministerial Conference on Health Research held in June 2008 in Algiers, Algeria, the Regional Director World Health Organisation Afro, Dr Luis Gomes Sambo observed that research and health development programmes are not linked. He said there is a need to find ways to stimulate dialogue between the two. The WHO Regional Office for Eastern Mediterranean Dr Hussein A. Gezairy echoed Dr Sambo’s concern, saying health research is a prerequisite of new tools. He said a deficit of knowledge that exists between problems and solutions requires decision makers to possess a culture of solving immediate problems using research. “There are gaps between what is factual and what the health workers are carrying out,” he said. The lack of a link between research and its users is due to a lack of a truth-seeking culture by Ugandans, says Julius Ecuru, Assistant Secretary of Uganda National Council of Science and Technology.
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problem is exacerbated by a lack of adequate science communicators. Mr Ecuru says advocacy groups 5 The need to sensitise the public to challenge decision makers on the policies they make. These advocates should work with researchers to provide distilled information to policy makers such as members of parliament. The legislators too, should be more proactive in asking for information from researchers since there are no clear channels of delivering information to them. The MPs with scientific backgrounds are better placed to be proactive about research, says Innocent Rugambwa, Director of the Department of Library and Research Services in the Parliament of Uganda. He says the few scientists in parliament usually have information sources which helps them to contribute actively during scientific debates. “Records of the Hansard indicate that scientific debates are not well attended. Few MPs can contribute to them. Those who contribute are by default scientists,” says Mr Rugambwa. He says some MPs are active because they ask the library research team for new trends and interventions in certain areas. A research team is formed based on the information request an MP makes, whether to add to what is topical or whether the legislator is travelling abroad for a conference. Once an information request is made, a team from the 16 multi-disciplinary library follows it up. On average, MPs make about 235 recorded reports annually. Just like the legislators with non-scientific backgrounds, sometimes the request team is hampered by their lack of scientific background. By June, the library team had an agriculturalist as the only scientist on the team. The rest of the people on the team were social workers, lawyers and a statistician. By July, parliament was supposed to add an environmentalist and engineer to the team. “Policy makers need research to make strong policies. They should be instrumental in providing researchers with direction on what information they need,” says Dr Mbidde. As a way of making research accessible to policy makers, researchers should simplify the language they use, says Dr Gezairys. It is not only policy makers who find it difficult to interpret research language, other research users such as journalists also face the same problem. For example, Ugandan journalist Charles Wendo was one of the 1,500 journalists who covered the XIV International Aids Conference that was held in Barcelona, Spain in May 2002. At this conference, results of a Ugandan study involving discordant couples in Entebbe and Kampala were presented. Whereas the results presented an opportunity for a big international story, only Wendo reported the story from the conference. The New Vision published it on the front page. Wendo’s scientific background was crucial to his ability to recognise the study results as a potential big story. Later in December, the London School of Medicine held a press conference about the discordant study results. It made headline news worldwide.
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was nothing in the Ugandan media. 5 There “Most journalists face a problem of deciphering medical jargon. Researchers tend not to know how to simplify information,” says Wendo. A lot of research is not utilised because it is not communicated to the public, says Dr Dan Kaye, a Co- Investigator of the Wellcome Trust Project on Engaging the Public in Health Research. There is a need to ensure that policies are made using evidence that is provided through research. The two year Wellcome Trust Project aims at ensuring that communication is used as a tool for relaying different health research products to diverse users. “We are teaching researchers to communicate results to the media and the public; and engaging the media on how to communicate science research to various audiences,” he says. Researchers do not motivate the public because the latter does not consider research as a necessary tool for development, says Dr Sewankambo. He says that in Uganda, research is mainly theoretical. The fact that there are no good examples to show that something came out of research, makes the situation worse. But researchers are often difficult sources of information for journalists, unlike politicians who are eager to be quoted, says Wendo. “Few people understand the role of the media,” he says, “The majority of researchers think journalists are wasting their time, which they would rather spend doing their work than explaining issues.” Yet, says Wendo, scientific research is a very good excuse to keep health topics in the limelight. Technocrats always repeat the same information about diseases, making it difficult for journalists to find new angles for their stories. Journalists too need to make big improvements by setting the agenda rather than following that of researchers. “Journalists should have a schedule of what is being worked on and when it is likely to be released. They should create rapport with the researchers before the findings are released,” says Wendo. They should read widely on a discipline before an interview in order to ask intelligent questions. Journalists should also educate scientists about their work because researchers are not well informed about the media. For this to work ideally, all researchers should have communication budgets to enable researchers work together with the media for quick dissemination of research results in simple language for public consumption. Dr Lamorde overcame this hurdle when he budgeted for communication at the proposal stage of his study. His foresight is what will enable him to reach various audiences such as the media, fellow researchers and especially the herbalists in good time. This story originally appeared in the East African on 28 September 2009.
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HIV-Prevention Research: It’s a Community Process By Richard Hasunira, AVAC HIV Prevention Research Advocacy Fellow based at HEPS-Ugand
Kiwanuka and his wife, Margaret, of Lutengo Village in Masaka participated in the trial that recently found that a vaginal gel called PRO 2000 was not effective in protecting women against HIV infection. They say they were disappointed that the gel did not work, but are proud that they took part in a process that should in future lead to the discovery of a safe and effective product that will bring the HIV epidemic under control. “Even if the benefit comes much later, the future generations will benefit the way I am benefiting from the drugs I now take that other people – people who may not be still alive – contributed to their discovery in the past,” says Mr Kiwanuka. The attitude of Kiwanuka and his wife represents a major success for the biomedical HIV prevention research field. Researchers in and outside Uganda have over the past decade invested time, effort and money to build public support and interest in the search for new ways to prevent HIV. This was not the case the first time an experimental HIV prevention product was tested in Uganda. In 1999, a vaccine called ALVAC was tried in Uganda in 1999. But unlike the recent test, the earlier one sparked a public uproar. Some people, thinking the vaccine would Currently, at least 12 different trials vaccinated. cure AIDS, rushed to be
are taking place in the country. Each Others wanted to hear none has an elaborate mechanism for of it. “This vaccine should be tried on animals in the involving the affected communities national parks. President Museveni has sanctioned its in research. use on Ugandans in exchange for money to finance his war in the Congo,” declared one opposition politician, amid wild applause from his audience at a rally in Kampala. The rally was covered live by a local radio station. An article in The New Vision of 1st March 1997 wondered whether the trial was not an example of “hit and run research” by scientists from rich countries coming to a poor country, where no one would raise safety and ethical questions. A Church of Uganda bishop warned during a church sermon, “People made in the image of God are not to be used as objects to be disposed of when experiments fail.” At least three scientists joined the critical side, with the late Prof Charles Ssali warning that the vaccine could start a new epidemic, and that the trial was a “crime against humanity”. The members of the public just did not know which scientists to believe. The trial had to delay for at least a year as the researchers, led by Prof Roy Mugerwa, temporarily became advocates, running from one forum to another trying to clear the misinformation and to generate consensus. In the end, the trial was cleared only after it was debated by parliament, approved by the cabinet, and endorsed by the president. Even when the trial was eventually cleared, researchers had trouble finding participants. Most of the 40 volunteers had to come from the army because Joint Clinical Research Centre (JCRC), which was conducting the trial, was a military institution. It took great courage for the volunteers to take the injections. “We heard negative rumours that the vaccine was meant to wipe out the African race and that it would affect our fertility. But I went through the trial and nothing went wrong with me,” Paul Wetaka, a soldier and one of the first volunteers to be injected with the vaccine, was later quoted as saying. Midway through the trial, JCRC established a 20-member Community Advisory Board (CAB), made up of opinion leaders, nurses, a volunteer, a policeman, a prisons officer and representatives from some organisations involved in HIV/AIDS activities.
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did a good job to keep the volunteers on and reassuring them,” JCRC’s Dorothy Akurut was reported as 5 “They saying. “Whenever volunteers were not feeling well, they thought it might be the effect of the candidate vaccine, and they would contact the CAB, who would then counsel them and liaise with the scientists to investigate it. When faced with myths, volunteers contacted CAB members, who sought answers from the scientists.” Use of such boards has become the standard tool for HIV-prevention researchers to deal with communities that host trials. National and international guidelines even encourage researchers to go farther. Besides establishing a CAB, they are urged to have an information desk and a toll-free number, and to convene community meetings, focus group discussions or take other approaches to engage with trial participants and the broader community throughout the process of planning and implementing a trial. Since the ALVAC trial, Uganda has hosted many HIV prevention trials involving vaccines, microbicides, male circumcision, prevention of mother-to-child transmission of HIV, the possible use of AIDS drugs in prevention of HIV infection, and other options under investigation. Currently, at least 12 different trials are taking place in the country. Each has an elaborate mechanism for involving the affected communities in research. This has helped them raise the required numbers of volunteers, build community capacity to understand and inform the research process, and receive and respond to community concerns in a timely manner. Eventually, this even will help build a foundation for future demand when research leads to an effective biomedical HIV-prevention product. The Masaka trial in which Kiwanuka and his wife Margaret participated was able to attract 840 HIV-negative women whose mates were positive. When the trial started in 2005, this was “We heard negative rumours that the a “hard-to-find population,” according to the trial vaccine was meant to wipe out the African coordinator, Dr Zacchaeus Anywaine. And the task race and that it would affect our fertility. of finding eligible couples was even more difficult But I went through the trial and nothing because many women were disqualified if they were went wrong with me.” likely to move out of the area within 12 months; were pregnant or within six weeks post-partum; were suspected to have a cervical problem that needed referral; were allergic to latex; or were likely to have sex more than 14 times a week regularly. Researchers succeeded despite these obstacles by casting the net wide to cover the entire district and by recruiting directly from the community rather than from health centres as is done in most trials. The trial achieved impressive results: 94% of recruits remained in the program throughout the trail, and 89% adhered to prescribed uses of the gel in spite of the long period of follow-up (12-24 months) and the requirement that each woman make regular visits for genital examinations, blood tests and urine pregnancy tests, and answer sensitive questions about her sexual activity. About 140 of the women also submitted to detailed interviews and participated in focus group discussions. Researchers attribute their success to the project’s flexible, broad approach to community involvement. Besides a 14-member CAB which brought together representatives of political leaders, the medical profession, HIV/ AIDS care providers, community leaders and the media, the research team established a network of “trial participant leaders” who enabled the investigators to identify and respond quickly to concerns from the grassroot community level where the CAB members could not effectively reach. The trial staff also took advantage of opportunities to disseminate information in less formal ways. They addressed the Masaka district council at least three times and the media on a quarterly basis. They also participated in meetings convened by other research institutions, and convened meetings of community leaders to disseminate the trial outcome. All this created a good environment for the research. One woman volunteer in Mende, Kalungu, said she did not feel compelled to keep her participation confidential because she did not expect any negative consequences from other people knowing about it. “Some people knew. We did not hide it from them; we told them that the health workers tested our blood samples and we are involved in some research and that there is a gel being investigated and we are involved,” she said.
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5 The Masaka trial still shows that some work still has to be done to perfect the notion of community involvement in HIV prevention research, however. Concerns continue to be raised by activists about the independence of the CAB, whose members are selected and trained the researchers. Ethical questions also have been raised about the presence of journalists on the CAB. Some members of civil society in Masaka and the broader community outside of the host community felt left out of the community engagement initiatives. There also were gaps how information on the trial and its outcomes was perceived and interpreted by some community members. One participant had not received the results three months after they had come out, for instance.. On the day the results were announced, one FM radio falsely reported that the trial had been “stopped after most of the women were infected.” One community leader said he had heard had that the gel worked, which was also wrong. These gaps in information demonstrate that the Masaka researchers needed to have done more to ensure that all community stakeholders get timely, correct information. Still, the increased willingness of researchers to involve community stakeholders in research is a step on which further efforts to make the strategies more effective. Studies have shown that research interventions are most likely to succeed when all community members concerned – investigators, government and nongovernmental entities, product manufacturers and above all, community members – regard the research as relevant and the process as collaborative. For more information, see:
AVAC (www.avac.org): A global source for updates, advocacy and information on biomedical HIV prevention Prevention Research E-Learning Centre (www.hivpreventionresearch.org): A website designed to help trial staff, advocates, policymakers and other stakeholders understand and speak knowledgeable about HIV prevention research. www.clinicaltrials.gov is a searchable database of all clinical trials under way around the world. It also provides background on research standards.
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5 Understanding Studies: The Hierarchy of Evidence From Covering Medical Research: A Guide to Reporting on Studies By Gary Schwitzer Association of Health Care Journalists Center for Excellence in Health Care Journalism
Not all studies are equal. And they shouldn’t be reported as if they were. A study that finds an effect of an agent in the test tube is a far cry from a randomized clinical trial of the agent in 500 people over two years. The latter may deserve headlines. Few in the former category deserve such a spotlight. What follows is a very brief overview of some of the key differences among different types of studies. There are textbooks written on this, so we emphasize that this is just an overview. Descriptive versus analytical studies As the name implies, descriptive studies describe patterns or trends of disease in people or places. These are used to form theories – or hypotheses – about the causes of diseases. Case reports (or case series) and crosssectional studies fit in this category. Analytical studies test specific causal theories using a treatment group (people who receive the treatment under investigation) and a control group (people demographically similar to the experimental group who do not receive the investigated treatment). Randomized clinical trials, cohort studies and case-control studies are analytical studies. The hierarchy or pyramid Some find it helpful to think about a hierarchy of evidence, which ranks different types of studies in a pyramid, with those at the top having greater potential to answer questions with more certainty. Fans of the hierarchy model believe it’s an easy way to remember that it takes a lot of studies at the bottom of the pyramid to overturn the findings of one well-done study at the top of the pyramid. Starting at the bottom of the pyramid, some of the distinctive characteristics of the study types are obvious: 1.
Ideas, editorials and opinions, while commonly published in medical journals, are just that – ideas, editorials and opinions – not necessarily backed up by evidence.
2.
In vitro research means research in a test tube, culture dish, but not in vivo (Latin for “living thing”). Even a good news release will point out the distinction, as with one we saw that stated: “This is an in vitro study ... It’s not clear that these levels could be achieved in animals or in humans.”
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Animal research is the next rung up the ladder. Reporters covering animal research should always note the leap that may occur between animal research and any possible implications for humans. Some of the limitations of this research were analyzed in an article in the journal PLoS, Publication Bias in Reports of Animal Stroke Studies Leads to Major Overstatement of Efficacy, and summarized by Nature. com: “Published animal trials overestimate by about 30% the likelihood that a treatment works because negative results often go unpublished, a study suggests.
A little more than a third of highly cited animal research is reproduced later in human trials, and although about 500 treatments have been reported as effective in animal models of stroke, only aspirin and early thrombolysis with tissue plasminogen activator work in humans. The lack of negative results in the literature may explain why so few drugs tested in animals are effective in humans.”
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Case reports or case series are descriptions of cases – or patients – reported by physicians. The cases describe individuals (reports) or groups of patients (series) which may be the first alert that something is going on.
A good example: The very first evidence reported on HIV/AIDS was a case report in 1981. www.aegis. com/pubs/MMWR/1981/MM3021.html. Be wary of the kind of case report we so often hear, such as “In a first of its kind, a Saskatchewan surgeon has transplanted five organs …” And uncontrolled case series, wherein several people get the same treatment but there’s no comparison group. This leads to news story leads like, “A Saskatchewan surgeon reported his dramatic results from a new surgical procedure he performed on 12 patients with…”
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Case control studies look at groups of people – some of whom have a condition and some who don’t. The condition already exists; the exposure has already happened. Case control studies work well for rare diseases; in a cohort study you’d need a large sample to get even a few cases of a disease, but with casecontrol studies you simply select already-diseased individuals.
A good example: The early report on Legionnaires’ Disease. Researchers found men who had fallen ill and then compared them to men who did not get sick.
Be careful: The cases and controls might not be matched well, so the results could be flawed. For example, a study in the British Medical Journal addressed what the authors thought were flaws in 20 years of case control studies suggesting that appendectomy protects against the development of ulcerative colitis.1 Previous studies had not taken appendicitis itself – as opposed to removal of the appendix, or appendectomy – as well as a condition called mesenteric lymphadenitis into account. It turned out to be those two factors, and not appendectomy, that were linked to a lower rate of ulcerative colitis.
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Cohort studies select people based on their exposure to something of interest – estrogen pills, asbestos, etc. – and then follow those people to determine if a selected outcome, such as cancer, occurs. In a retrospective cohort, the exposure and outcome have already happened. In a prospective cohort, only the exposure has occurred, and the participants have to be followed for a specified period of time to observe outcomes. Cohorts are great if you’re looking at a rare exposure – asbestos in a factory, radiation from a nuclear plant, etc. – and you want to know how many exposed versus unexposed people develop a particular disease.
Good examples: The Framingham Heart Study and the British Doctors Study.
Be careful: There might be a problem with selection bias – that is, the people who are selected to be followed might be significantly different from others in ways that could be important to the study. Confounding variables are characteristics such as age or gender that could affect how a person responds to a treatment. If you’re studying a possible link between a drug and hip fracture, age is a potential confounding factor because age is related to hip fracture. One group with an average age of 70 might only include people aged 70 while another with the same average age could consist of equal proportions of individuals aged 50 and 90. These are the kinds of confounders to look for in cohort studies.
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Randomized clinical trials are the stars of the scientific world. The key feature that separates this study type from the others is that investigators randomly assign trial participants to a treatment or control group, which minimizes bias and factors that might skew the results. It is important that the two groups be as alike as possible in order to ensure effects are due to the treatment alone and not confounding variables.
When looking at clinical trials, check the number of participants and the length of the study. More people followed over more time will give a more accurate measure of treatment effects. Why not use clinical trials every time? They’re expensive, take a lot of time, and could have ethical ramifications. (For example, is it ethical to put some sick people on a placebo?).
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A good example: The Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial, which sought to determine whether certain cancer screening tests reduce deaths from prostate, lung, colorectal and ovarian cancer. The Washington Post reported on a randomized clinical trial that shot down an acupuncture claim at www.washingtonpost.com/wp-dyn/content/article/2006/06/19/AR2006061900833_pf.html
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Be careful: Even “gold standards” aren’t perfect. First, you should think about who volunteers for randomized trials. These days, industry pays a lot to recruit volunteers. Might this skew the tested population to those who are poorer or have time because they don’t have a job? Be aware of subtle differences that could impact how the findings could be extrapolated to a wider population. Try to find out who got excluded for a trial and why? Who dropped out and why? Systematic reviews are studies of studies. Their “subjects” are earlier studies that meet the criteria of the particular research question of interest. Those who employ systematic reviews try to use strategies that eliminate bias and random error. Meta-analysis is a technique to help researchers combine studies. It is really a study of studies or a pooling of data from several studies with a goal of trying to establish the weight of the evidence. But, as often noted with the saying “garbage-in, garbage out,” the quality of the meta-analysis depends on the quality of the studies being analyzed. Ray Moynihan, a veteran health journalist and author from Australia, writes an explanation of why systematic reviews are at the top of the pyramid. “The systematic review is now widely regarded as the least biased and most rational way to summarize the research evidence that evaluates health care interventions meant to prevent and treat illness. A systematic review can help distinguish therapies or interventions that work from those that are useless, harmful, or wasteful. It can reliably estimate how well different options work, and it can identify gaps in knowledge requiring further research.
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5 Tips for Understanding Studies (www.healthnewsreview.org)
Does The Language Fit The Evidence? - Association Versus Causation A health writer’s first attempt at expressing results from a new observational study read, “Frequent fish consumption was associated with a 50% reduction in the relative risk of dying from a heart attack.” Her editor’s reaction? Slash. Too wordy, too passive. The editor’s rewrite? “Women who ate fish five times a week cut their risk of dying later from a heart attack by half.” This edit seems fair enough – or is it? The change did streamline the message, but with a not-so-obvious, unintended cost to the meaning. Was the subjects’ fish consumption really responsible for their dying less frequently from heart attacks? The new wording suggests that’s the case, but the original study does not support a conclusion of cause and effect. 7 Words (and more) You Shouldn’t Use in Medical News Years ago, the publisher of this site wrote an essay with the above title. The words were: •
• • • • • •
Cure Miracle Breakthrough Promising Dramatic Hope Victim
The list wasn’t developed in isolation. Each of them was suggested by sick people he had interviewed through the years. Each is a vague - sometimes meaningless - term when used in a health care context. Granted, they are exciting terms that might help sell papers or move a reporter’s story onto page one or into the first news block, but they can be dangerous terms that mislead vulnerable people. Journalists can also get too close to a source and even start to write like a medical source talks. Medical jargon, while perhaps useful in the clinical setting, can have unintended innuendo if it slips into news stories or into the vernacular. Veteran journalist Judy Foreman has written about offensive words or terms that slip into medical jargon. Some of her examples: •
• • •
incompetent cervix; the patient failed chemotherapy; the non-compliant patient. If journalists parrot those terms when they hear them from physicians, editors should swoop in and edit their copy.
News stories that cover clinical trials face a particular challenge with word choice. Trials are done to see if new ideas work and if they’re safe. So stories shouldn’t lead people that the evidence of efficacy and safety is already in hand while the trials go on. “Therapeutic misconception” is a legal term referring to a situation in which people who agree to enroll in clinical trials believe there will be certain benefit from their participation in the experiment. Indeed, the experiment is not a treatment or a therapy, and journalists shouldn’t refer to it as such until the evidence is in. In the same way, it is troublesome to use the term “patients” to refer to people who agree to enroll in trials. Patients are people who get treatments or therapies. In the trial, these people are research subjects or participants (more polite terms than guinea pig).
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can spread a “therapeutic misconception” when they hype unproven ideas. For example, almost 5 Journalists 1,000 stories were reported about a drug named pleconaril, which was being studied for the common cold. It was called a cure, a breakthrough, a miracle, a wonder drug, a super drug. That was when trials were under way. When the evidence was in, a Food and Drug Administration advisory committee rejected the drug by a vote of 15-0. Trials ended. The 1,000 stories can be put in the books as a waste of time. The drug never moved beyond “experiment” to “therapy” despite the glowing news coverage. The words used to describe health care and medical developments are important. Single Source Stories The Statement of Principles of the Association of Health Care Journalists states that journalists should: “Recognize that most stories involve a degree of nuance and complexity that no single source could provide. Journalists have a responsibility to present diverse viewpoints in context. In addition, anyone with knowledge of the health care industry, of medicine, and of the scientific community knows that many vested interests reside among government health spokespersons, researchers, universities, drug companies, device manufacturers, providers, insurers and so on. To reflect only one perspective of only one source is not wise. Most one-source stories lack depth and meaning. Avoid single-source stories.” Consumers beware: if you read a single-source story, it’s healthy to be skeptical about any claims made therein. Phases of Drug Trials Journalists who report on drugs while they are still in clinical trials need to understand the distinction between Phases I, II, and III of drug trials. It is misleading to report bold or conclusive statements about how well a drug works when it is only in Phase I trials, since the primary goal of Phase I trials is to evaluate how safe a drug is, not how well it works. (See this simple guide to clinical trials.) But many times journalists report on early phase drug trials as if all the evidence is in hand. (See “How the media left the evidence out in the cold.”) The Association of Health Care Journalists advises its members to “give accurate portrayals of the status of investigational drugs, devices and procedures, including significant caveats and explanations of hurdles, unknowns and potential problems.” If consumers see or hear stories that don’t carry such caveats, they should have doubts about the accuracy and balance of the story. Animal & Lab Studies Stories about research in animals or about research in the laboratory but not yet in humans (sometimes called pre-clinical or in-vitro studies) should include warnings about how this research may not pan out in people. Stories that fail to include such information may paint a brighter picture for possible application in humans than is actually the case. Nonetheless, preliminary research stories continue to be reported. In the future, we may follow up on some of these stories to see how many panned out in people. Here are some examples: • Appetite-suppressing hormone discovered (in rats) • Hay fever vaccine in mice • Statin curbs smoking lung damage in rats • Preventing lung cancer in mice.
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5 Digging Deeper:
Other Internet Sources on Health Science and Research
Sara Mbaga, librarian for the Albert Cook Medical Library at Makerere University, recommends the following web sites for health-related issues. All can be accessed for free from the Makerere University Main Library web site (http://mulib.mak.ac.ug/index.html) Annual Reviews http://arjournals.annualreviews.org/action/showJournals Annual Reviews provides researchers, professors, and scientific professionals with a definitive academic resource in 34 scientific disciplines. Reviews publications are among the highest cited publications by impact factor according to the Institute for Scientific Information (ISI). Beech Tree Publishing http://www.minabs.com/ Three international, peer-reviewed academic journals in the fields of Public policy for science and technology, Research, Environmental, social, health and other impacts. Free Access to Science provided under the Washington DC Principles http://www.dcprinciples.org/index.htm The resources outlined on this site are published research findings by Medical/Scientific Societies and Publishers like: American Society for Human Genetics, IEEE University Library. Jstor JSTOR offers both multidisciplinary and discipline-specific collections, such as arts and sciences, as well as Biological Sciences, Ecology & Botany, Health & General Sciences. Other disciplines include Mathematics, Statistics and Business. Mary Ann Liebert Publishers: http://www.liebertpub.com Mary Ann Liebert database offers access to 55 authoritative publications in the most exciting and promising areas of biomedical research, clinical medicine & surgery, and law. National Academy Press (US) http://www.nap.edu/ NAP provides free access to books on Science, Engineering and Medicine. Oxford University Press (OUP): http://www3.oup.co.uk/jnls/ The OUP site offers access to journals in the following subject fields: Art history & Visual culture, Biochemistry & Molecular biology, Biology & Ecology, Communication studies, Computing & Engineering, Economics & Business, Genetics, Geoscience, Health sciences, History, Language studies, Linguistics & Philology, Law, Literary studies, Mathematics & Statistics, Medicine, Music, Neurology & Neuroscience, Philosophy, Physics, Political science, Psychology & Psychiatry, Religion, Sociology, Social policy, and Social work. University of Chicago Press http://www.journals.uchicago.edu/ UCP provides full text access to journal articles on Astronomy, education, humanities, law, life and physical sciences, medical sciences and social sciences. University of California Press http://ucpressjournals.com/index.asp
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