Australia Speaks: 2014 Opinion Poll - views of 1000 Australians

Australia Speaks!

2014 Opinion Poll – views of 1000 Australians Volume 12

RESEARCH AUSTRALIA

AN ALLIANCE FOR DISCOVERIES IN HEALTH

A Message from Research Australia’s Leadership

Table of Contents Priorities for the Federal Government..............................................................03 Biobanks’ importance to health and medical research.........................07

Research Australia takes great pride in presenting Australia Speaks, the report of our public opinion poll conducted in June 2014. It provides an interesting overview of Australians’ views on health and medical research, science, preventive health initiatives, and philanthropy for such research.

Research is the genius of our economy, fueling innovation and discovery. This year, with a new Federal Government and proposals to substantially increase government investment in health and medical research over the next decade, the polling is particularly significant. Since 2003, public opinion polls commissioned

by Research Australia consistently show that Australians value government expenditure on health and medical research, and understand how research is linked to their health and wellbeing. Our latest polls highlight this point:

Preventive Health....................................................................................................10 Communication of science and health and medical research........11 Philanthropy for Health and Medical Research...............................12 Opinion polling questions.......................................................................15 Major partners of Research Australia.........................................17 About Research Australia............................................................18 The Fine Print.............................................................................19

• Most Australians consider the Federal Government should be spending more money on health and medical research • 73% say additional funding should come from either the health budget, reducing spending in non-health areas or increased taxes • up to 86% of respondents would consent to their tissue samples being used in research • 76% support more research into what people can do to improve their own health.

However, less than half the population donate regularly to health and medical research, and government proposals to increase investment into health and medical research may negatively impact donor intentions in the immediate term.

Over the years, Research Australia’s findings offer an intriguing look at our attitudes to research and how it impacts so many aspects of our life. With increased public expenditure a strong possibility, health and medical research will become a more focal point in the national conversation. Research Australia will continue to track Australians’ viewpoints on research and health, and we will share our findings with our members, the public and policymakers. Research is the future of our nation, and such investment bolsters our economic competitiveness, helps contain health costs and improves the health of our nation – for this generation and the next.

02

Prof. Christine Bennett, Chair, Research Australia and Elizabeth Foley, CEO and Managing Director, Research Australia

Priorities for the Federal Government Health and Medical Research is a vitally important component of the large Federal Health Budget, receiving some $3.9 billion of the $59.5 billion invested annually by the government in health. This year, we are looking closely at the general public’s views on the Government’s announcements around funding significantly more research in the future.

Australians’ top 10 priorities for the Federal Government 2014 01

Improving hospitals and the health care system

02

Improving employment opportunities

03

Doing more to keep prices and the cost of living down

04

Improving education standards and outcomes

05

Keeping the national economy strong

06

Creating more skilled jobs and apprenticeships

07

Having policies and programs for the aged and ageing, including for pensioners and self-funded retirees

08

Providing strong leadership

09

More funding for health and medical research

10

Increasing funding and programs for preventive health care

85% 84% 81% 81% 80% 79% 78% 77% 76% 75%

3 of our top 10 priorities for Federal Government spending relate to looking after our health These top ten rank above 17 other important issues Over the past 10 years: • Improving hospitals and the health care system has consistently ranked number 1 • Funding health and medical research has always been in the top 10 priorities

03

What research to fund with scarce resources?

While Federal Government funding for health and medical research is substantial it only funds around 20% of the research our scientists, doctors and researchers are looking to undertake. Difficult decisions need to be made each year about what research gets funded.

People want priority to be given to research that benefits Australia

04

89%

87%

87%

84%

72%

60%

Fund research into the diseases and issues that will most benefit Australians

Fund research into diseases that affect children

Fund research that will save money in our healthcare system

Fund research that will generate jobs and wealth in Australia

Fund research by Australia’s best health and medical researchers, regardless of which disease or health area they are working on

Fund research where little or no research is being done overseas

50% Fund research into areas that affect people in developing countries and attract minimal funding worldwide

Strong support for increasing spending on health and medical research In the May 2014 Federal Budget, the Government announced the creation of the Medical Research Future Fund (MRFF), to be funded from future savings in the health portfolio.

More funding for research

17%

43%

13%

17%

10%

17% Redirect health savings to additional health and medical research 43% Reduce spending in non-health areas 13% Increase taxes 17% No increase to health and medical research funding 10% Don’t know/unsure

73% of Australians supported additional Federal funding being directed to health and medical research

17% of people thought funding for health and medical research should not be increased

56% thought the additional funding should come from reduced spending in non-health areas or increased taxes 05

Will additional government investment reduce donations?

Philanthropy is the third vital source of research funding alongside private sector investment and governments. It is estimated to account for between 5 and 10% of total investment in health and medical research. It supplements rather than replaces government and commercial investment, supporting research that is:

The plan to invest substantially more money in health and medical research is likely to reduce donations to health and medical research at least initially, even though it will be several years before the Medical Research Future Fund’s annual payout grows to the projected $1 billion.

• too new, high risk or contentious, or • at too early a stage, to attract government or commercial funding • Encourages and enables young scientists to pursue a career in research.

Regular donor propensity to donate – impact of government plans to fund more research

4%

• 40% of regular donors say they are less likely to donate if government plans go ahead

Much more likely

Somewhat more likely

Somewhat less likely

Much less likely

06

18% 22% 39%

No change

Can’t say

11%

• More communication is required to explain: – The MRFF will take 9 years to grow to $20 billion – It will be some years before it starts funding significant amounts of research – The special role philanthropy plays regardless of MRFF funding

6%

Biobanks are important to research Patients are a valuable source of research information. In particular, our tissue and blood samples collected as part of medical procedures are a valuable tool for research. These samples are stored in ‘biobanks’, where the samples are stored and can be used in future research studies. Biobanks are an important part of our national research infrastructure.

There is strong support for the tissue samples that have been collected for medical procedures to be used in research.

• Support for using samples increases with age, with 77% of over 55’s consenting to use samples for research compared to 61% for 35–54 year olds, and 51% for 18–34 year olds • Younger people are more likely to say that consent depends on the nature of the sample

Consent to tissue samples being used for research 63% Yes 23% Depends on type of tissue 04% No 10% Unsure

63%

23%

04%

10% 07

Using our tissue samples for research Most Australians want to provide separate written consent for their tissue samples to be used in research

Separate written consent 62% Yes 25% No 13% Unsure

‌.and most only want to give consent once for all future research uses

Preferred option is consent once 56% Once 36% Each Time 09% Unsure

Stronger support among women than men for separate written consent

YES

69%

82%

of Australians support continued storage of samples after the initial research so that they are available for future research

54% 6% Only said they did not support continued storage

Support is strongest among those aged 55 and over

90% 76% of older Australians supported continued storage of samples

08

YES

of older Australians preferred to give consent once for all future research purposes

Linking tissue samples to personal information Tissue samples are of much greater value to researchers when they are linked to personal information such as the individual’s name, medical record and other information. And linking data enables research findings to be provided to participants.

Only 23% of respondents expressed a preference for tissue samples not to be linked to their personal information.

The overwhelming majority are interested in findings that are specific to them. Proportion of people interested in findings that were:

81%

Linking samples to personal information Specific information obtained from your sample that may be important to your health and treatment

79%

23% Unlinked 20% No Preference

70%

General information regarding the results of the study overall Any incidental findings that weren’t directly related to your diagnosed condition

Your own potential genetic risk for an inherited disease

More education is needed

57% Linked

76%

More people want research findings relevant to them than are prepared to have their data linked.

Further education about the benefits of having tissue samples linked to identifying personal data is required.

50%

63%

Support for the linking of data is higher among men than women.

Support is also higher among those aged 55 and over (67%).

09

Preventive Health – message getting through but more to be done

Believe They Know How 89% of Australians say they are aware of what they need to do to stay healthy

Last century the world became better at controlling infectious diseases through improved sanitation, vaccines and antibiotics, and as we have made advances in surgery and medicine. Consequently, people live longer and we have seen growth in chronic diseases.

Embracing Healthy Lifestyles 86% have made lifestyle changes in the past to improve their health

Chronic diseases are non-infectious diseases like cancer, cardiovascular disease, diabetes type 2 and dementia. Increasingly there is evidence that there are lifestyle changes we can make which reduce our risk of contracting a chronic disease. Research has shown that the lifestyle people choose is very important in managing the risk of various chronic illnesses, in conjunction with their genetic predisposition.

The old saying of ‘prevention is better than cure’ holds true, but this is still an area that requires more research.

More research into things we can do to improve our own health is important

27% Strongly agree 49% Somewhat agree 16% Somewhat disagree 05% Strongly disagree 03% Unsure

10

More preventive health research 76% agree more research required

The Keen and Curious 66% want to learn more about what they can do to improve their health

No Room For Improvement 27% believe there are no more lifestyle changes they can make to improve their health

89% 86% 76% 66% 27%

Are Australian’s interested in science?

Science is a part of every day life but are we particularly interested in finding out about it? And how effectively are researchers communicating the impact of science and health and medical research?

• Only 28% of Australians are very interested in science or health and medical research • Including the ‘somewhat interested’, Australians tend to be more interested in health and medical research (86%) than science (79%).

Level of interest Health and Medical Research

28% Very interested

58% Somewhat interested

The proportion of men and women interested in science

73% 85% Annual donors the most interested

People who donate at least annually to health and medical research are significantly more interested in science (86% vs 79%) and health and medical research (94% vs 86%) than the general population.

Communication needs to improve Less than a third of people thought science or health and medical research was communicated effectively.

Science

Men are more likely than women to think that science or health and medical research are not effectively communicated.

28% Very interested

51%

Science not effectively communicated

Somewhat interested

33%

48% 11

Philanthropy for health and medical research Donor activity in the past year

Most regular donors donate less than $100

Donations, bequests and grants from philanthropic foundations and trusts are an important source of funding for health and medical research.

Regular donors are people who donate to health and medical research at least once a year.

Donations to health and medical research

Value of donations to health and medical research from people who donate at least annually

05%

4 or more times a year

17%

2 to 3 times a year

24%

Once a year

46% donate at least annually to health and medical research

72% $1 – $100 20% $101 – $500 02% $500+ 06% Can’t say

12

20%

23%

11%

Less than once a year

Never

Can’t say

Donation intentions Two thirds of people who donate at least annually to health and medical research intend to donate about the same amount in the next year as they have in the last year.

Younger people expect to donate more 15% of 18-34 year olds reported an intention to donate more in the next 12 months, compared to 6% of those aged 35 and over.

Donation intentions

5%

13%

Donate to HMR at least annually

Everyone else

More than this year

Less than this year

8% 8% 46%

About the same as this year

14% Can’t say

65%

41% 13

Who thinks they should donate more?

In addition to asking people about how much they intended to donate in the next 12 months we asked them how much they think they should donate.

Regular donors think they should give more…

…and younger people most likely to think they should give more

Should you give more to health and medical research?

Yes, we should donate more to health and medical research

05% Definitely yes

53% 36% 63% 36%

39% Probably yes 43% No

Donate to HMR at least annually

13% Can't say

More ‘should’ than ‘will’ Percentage indicating ‘should’ compared to ‘intend’ to give more Cohort

Should

Intend

All Respondents

44%

8%

Regular Donors

18 – 34 year olds

14

53%

63%

13%

15%

Everyone else

Aged 18 – 34

Aged 35+

Opinion polling questions Australians’ top 10 priorities for the Federal Government Page 03

Q: When the specific study which you agreed to is finished, would you allow the hospital or university to store any remaining tissue for future research approved by a research ethics committee?

Q: Firstly, please think about what priorities you think the Federal Government should be focusing on over the next 2–3 years. As you read through the following list of issues, please rate how important you personally think each issue is, as a priority for the Federal Government to be focusing on over the next 2–3 years.

Please use a 0 to 10 scale where a 0 means that it is not important up to a 10 that means it is extremely important or a critical priority for the Federal Government to be focusing on over the next 2–3 years.

Base: respondents who would allow tissue to be used for research in some or all cases n=850

Base: All respondents n=1000 Note: not all priorities have been rated in all years

What research to fund with scarce resources? Page 04 Q: Federal, State and Territory governments fund most health and medical research in Australia. How important should each of the following considerations be in determining which research gets government funding? Please state whether you believe each of the considerations is very important, somewhat important, somewhat unimportant, very unimportant or unsure.

Base: All respondents n=1000

Q: When tissue samples are stored for research, they can be stored as linked or unlinked.

‘LINKED’ means your sample is given a code number, which can be linked to your name, medical record and other personal information about you. However, the code is confidential and only available to research staff. Tissue samples are of much greater value to research when they are linked.

‘UNLINKED’ means your sample is not given a number, therefore it is anonymous and cannot be traced back to your name or medical record.

If you allowed your tissue sample to be used for research would you prefer your sample to be: • Linked?

• Unlinked?

•N o preference?

Base: All respondents n=1000

Biobanks are important to research Pages 07 – 09 Q: Suppose you had an operation or medical procedure and your doctor needed to take a sample of your tissue (including blood) for tests. Not all the tissue may be needed for tests and could be stored in a tissue bank for future research. If asked, would you allow your tissue to be used in research studies approved by ethics committees?

Base: All respondents n=1000 Q: Do you think that a person should have to provide separate written consent for their samples to be kept in a biobank, as part of the hospital admission process?

Q: If you allowed your blood or tissue sample to be used for research, what type of results about the research would you prefer: •G eneral information regarding the results of the study overall •S pecific information obtained from your sample that may be important to your health and treatment •Y our own potential genetic risk for an inherited disease •A ny incidental findings that weren’t directly related to your diagnosed condition

Base: All respondents n=1000 Note: respondents could answer ‘yes’, ‘no’, or ‘unsure’ to each option

Base: All respondents n=1000 Q: Would you personally prefer to be asked for permission before each new study or to give your permission once?

Base: All respondents n=1000 15

Preventive Health – message getting through but more to be done Page 10 Q: We are often told about things we can do to stay healthy, such as undertaking exercise, avoiding certain foods, giving up smoking, the warning signs of heart attack, and the link between skin cancer and too much exposure to the sun. Please consider the following statements and indicate whether you strongly agree, somewhat agree, somewhat disagree, strongly disagree or are unsure.

Base: All respondents n=1000

Are Australian’s interested in science? Page 11 Q: How interested are you in science generally?

Q: In general, do you believe scientists effectively communicate the impact of their work on the nation’s health and economy?

Q: How interested are you in health and medical research?

Q: In general, do you believe that the impact of health and medical research on the nation’s health and economy is communicated effectively?

Base: All respondents n=1000

Philanthropy for health and medical research Page 12 Q: Thinking specifically about funding for health and medical research in Australia, about how often do you personally donate money to health and medical research?

Base: All Respondents, n=1000 Q: And, on average, about how much money in total each year would you donate to health and medical research?

Base: Respondents who have donated at least once to HMR, n=597

16

Donation intentions Page 13 Q: In the next year how much will you donate in total to health and medical research?

Base: all respondents, n=1000

Who thinks they should donate more? Page 14 Q: Do you think you should give more money than you currently do to health and medical research?

Base: all respondents, n=1000

Major partners of Research Australia FOUNDATION PARTNERS

PLATINUM PARTNERS

GOLD PARTNERS

SILVER PARTNERS

17

About Research Australia Research Australia is an alliance of 160 members and supporters advocating for health and medical research in Australia.

Research Australia’s activities are funded by its members, donors and supporters from leading research organisations, academic institutions, philanthropy, community special interest groups, peak industry bodies, biotechnology and pharmaceutical companies, small businesses and corporate Australia. It reflects the views of its diverse membership and represents the interests of the broader community.

Community

Greater investment in health and medical research from all sources

To make health and medical research a higher priority for the nation

Research Australia’s mission is to make health and medical research a higher priority for the nation, and we have four goals that support this mission.

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Investment

A society that is well informed and values the benefits of health and medical research

Prosperity

Position

Ensure Australia captures the benefits of health and medical research

Promote Australia’s global position in health and medical research

The Fine Print Acknowledgements

The opinion polling was undertaken on behalf of Research Australia by Enterprise Marketing and Research Services (EMRS).

The Biobank questions were supported by the Cancer Institute NSW.

Copyright

Research methodology

This work including without limitation all information text, graphs, names and logos is protected by copyright. This work may be used for your own personal use, information, research or study, or in a public forum solely for the promotion of the importance and benefits of health and medical research, so long as the work is attributed to Research Australia and used in a strictly not-for-profit capacity.

Reproduction by bona fide newspapers, journals and similar publications is also permitted by Research Australia subject to attribution of Research Australia in any reproduction. Neither this work nor any part of it may be reproduced, stored, on sale, redistributed or otherwise used for profit.

The survey was conducted on behalf of Research Australia by Enterprise Marketing and Research Services Pty. Ltd. (EMRS). EMRS used its online research capability to collect the data. A secure link was sent to an online panel which invited Australians to participate in the online survey during the week of 23 June 2014.

Biobank items are derived and used, with permission, from research by Dr Jennifer Fleming – Fleming J. Issues with tissues: Perspective of tissue bank donors and the public towards biobanks and related genetic research. In: Stranger ME, editor.

Human biotechnology and Public Trust: Trends, Perceptions and Regulation. Hobart: Centre for Law and Genetics, Uni Tas; 2007. p. 184-201] and a current NHMRC project “Ensuring the utility and sustainability of tissue banks for translational research in Australia through informed regulation and community engagement.”

APP102929 CIA: I Kerridge

1,000 Australian residents aged 18 years and over participated in the online survey.

To ensure that the sample was representative of a cross-section of Australians, quotas were assigned for age, gender, and location. Where quotas were not achieved the data was weighted to the latest ABS census information 2011.

Results have been compared to previous research where relevant.

The report is available on the Research Australia website at www.researchaustralia.org 19

RESEARCH AUSTRALIA LIMITED 384 Victoria Street Darlinghurst NSW 2010 T +61 2 9295 8546 ABN 28 095 324 379 www.researchaustralia.org

RESEARCH AUSTRALIA

AN ALLIANCE FOR DISCOVERIES IN HEALTH