Realizing the Right to Health

SESSION REPORT

500

Realizing the Right to Health:

How can a rights-based approach best draw on, and contribute to, the strengthening, sustainability and equity of access to medicines and health systems?

A Salzburg Global Seminar – World Bank Institute Collaboration In association with the Dartmouth Center for Health Care Delivery Science

Š 2013

Realizing the Right to Health Session Report 500

Session 500 Salzburg, November 9 to 14, 2012

Realizing the Right to Health: How can a rightsbased approach best contribute to the strengthening, sustainability and equity of access to medicines and health systems?

REP ORT AU THORS :

John Lotherington and Louise Hallman

PHOTOS:

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Robert Fish

Realizing the Right to Health Session Report 500

Table of Contents Summary Report: 05 Background and Objectives 06 Key Questions

Features: 07 “Ideas don’t happen because they’re good; they happen because people believe in them.”

Appendix: 13 List of Participants

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Realizing the Right to Health Session Report 500

Background and Objectives

We fully embrace “the rights-based approach to healthcare ”

Health is a fundamental right recognized in numerous international instruments, including the Universal Declaration of Human Rights, but that right is famously difficult to define and to implement, depending so much on context and the resources available.

Jim Yong Kim World Bank President

At Salzburg in November 2012 we brought together 75 participants from 22 countries, organized in country and regional teams to establish key principles and to design action plans to realize the right to health equitably and sustainably.

Crucially, each team contained members from health and health care communities, from judiciaries and the world of law, and from NGOs and civil society. It is only through promoting dialogues across professional boundaries that the complex questions around the right to health can be addressed.

The group worked on four key elements in the right to health: acceptability (respect for medical ethics and cultural appropriateness); accessibility (to everyone without discrimination); availability (of facilities, goods, services and programs); and quality (to be scientifically and medically appropriate, of good quality, and geared to patients’ preferences and needs). Despite significant improvements, access to health care services – and, in particular, equitable access to care - remains a major challenge facing developing countries. Countries are demanding an expansion of health services towards universal coverage. The desire to achieve universal coverage and the pursuit of the right to health can conflict with the resource constraints, and our aim was therefore be to review how health policy and decision makers best set priorities.

There was a general consensus that a human rights perspective is not necessarily incompatible with the need to define priorities, and while a human rights perspective does not imply unrealistic aspirations, it requires that States do better next year than they are doing today, and demands more of high-income than low-income countries. Essentially, there is a convergence between a human rights perspective and a health systems/development perspective. Both require long-term strategies and planning and both fundamentally address participation, accountability, non-discrimination, and attention to vulnerable groups.

John Lotherington

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Realizing the Right to Health Session Report 500

Key Questions Our two key over-arching questions were • How can the rights-based approach contribute to the strengthening, sustainability and equity of access to medicines and health systems?

• How can national and global health policy experiences contribute to the full realization of the right to health?

More specific questions included: • How do we overcome the important inequalities which still remain, in spite of recent progress, in access to medicines?

• How can we fully exploit the full potential of IT to overcome some of the major challenges, informing and engaging the public?

• How can information best be used collaboratively with physicians in shared medical decision-making, ensuring respect for patient preferences in diverse contexts?

• How far can strategic litigation and judicial decisions play an important role in seeking redress in health policy, for example in access to health care, to medicines, or to remedy health inequalities?

• When individuals go to court to seek redress, what is the risk of regressive judicial outcomes, given that access to justice may favor the better off in society, and how can that risk be overcome?

Maria Luisa Escobar

Leonardo Cubillos

Fairness doesn’t “ask you to treat everyone, it doesn’t

ask you to give everything to everyone. Fairness is not about unlimited generosity. Fairness is about being responsible with your resources, in allocating them in such a manner that all parties agree not on the decision, but on the process

”

Leonardo Cubillos Senior Health Care Specialist, World Bank Institute

Fellows of session 500 - Realizing the Right to Health: How can a rights-based approach best contribute to the

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Realizing the Right to Health Session Report 500

“Ideas don’t happen because they’re good; they happen because people believe in them.”

Louise Hallman

Editor, Salzburg Global Seminar

An edited version of this article appeared on the Dartmouth Center for Health Care Delivery Science’s website: http://tdchcds.dartmouth.edu/stories/salzburg/

Patients across the “world deserve the care they need and

Rounding off an intensive five-day seminar on ‘Realizing the Right to Health’ at the Salzburg Global Seminar, World Bank president Jim Yong Kim publicly declared for the first time: “We fully embrace the rights-based approach to healthcare.”

no less, the care they want and no more

”

Albert Mulley Director, The Dartmouth Center for Health Care Delivery Science

Speaking via live video-link, Kim’s declaration drew exaltation from Leonardo Cubillos, senior health specialist at the World Bank Institute. “Mission accomplished,” he tweeted.

But while the long-time rights-based approach to health advocate has reason to celebrate, the seminar demonstrated through its lectures, group work and final presentations that there is much still to be accomplished in the realm of health and health care. However, the seminar also demonstrated the dedication of the 75 Salzburg Global Fellows to this mission.

As Cubillos quoted from the UN in his opening remarks, despite the $6.5tn spent on health care per year, a little over one quarter of the world’s population still live without access to medicine or basic medical care. Many people are clearly not able to exercise their right to health.

From November 9-14, Fellows and faculty from 22 countries across the world came together for a seminar examining ‘Realizing the Right to Health: How can a rights-based approach best contribute to the strengthening, sustainability and equity of access to medicines and health systems?’, hosted by Salzburg Global Seminar at its headquarters at Schloss Leopoldskron in Salzburg, Austria, and co-sponsored by session partners, the World Bank Institute (WBI) and the Dartmouth Center for Health Care Delivery Science (TDC).

Tijana Duric

Over the five days, world-renowned faculty presented on a range of issues relating to the challenges and potential solutions in realizing the right to health to a room-full of eager Fellows.

Albert Mulley

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Realizing the Right to Health Session Report 500

When you don’t “provide health care to people who need

it, it is against their human rights

”

Agnes Binagwaho Minister of Health, Rwanda

World Bank President Jim Yong Kim speaks to ‘Right to Health’ Fellows via video-link

“When you don’t provide health care to people who need it, it is against their human rights,” Rwandan health minister Agnes Binagwaho stated bluntly on the first afternoon, via video-link from Kigali.

The Right to Health = The Right to Health Care, Food, Shelter and Information Repeatedly over the course of the seminar, Fellows heard that realizing the right to health is not just about the right to health care, but the right to other aspects that improve health, such as basics like food and shelter, as well as the right to information that helps individuals makes better informed ideas about their own health and that of their wider communities.

But, the right to health doesn’t necessarily mean the right to every single medicine available, Binagwaho clarified. Resource constraints in many countries mean that delivery of expensive medicines and interventions is simply not possible. Rather, she said, realizing the right to health means ensuring the provision of all possible health care interventions to everyone who needs them in a given country, regardless of their class, race or gender.

Lloyd Sansom

As one Fellow put it, in Nepal the right to health might mean the right to access the most basic health care, while in Chile it could be the right to access the top available cancer drugs. But what must be ensured in all cases is that people are not denied their right to equitable access to health care services, just because they are a disadvantaged person belonging to an undesirable section of society, as proven in the case in Kenya where HIV-positive women were forcibly sterilized without their consent.

Resources are scarce in many countries, but they’re limited in all. No country has a bottomless pit of money for health care. Even in the richest countries, issues of fairness

Agnes Binagwaho

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Realizing the Right to Health Session Report 500

in the access to health care treatments arise; who more deserves an expensive course of cancer drugs – a 75-year-old who has paid into national health insurance for many years but has only a few more years to live, or a 25-year-old who hasn’t worked or paid taxes for as long but who will have a much longer life ahead of them (in which to be a greater contributor to society) should they be cured?

Fairness in the Process, not the Decision “Fairness doesn’t ask you to treat everyone, it doesn’t ask you to give everything to everyone,” explained Cubillos after his presentation. “Fairness is not about unlimited generosity. Fairness is not about financial insustainability. Fairness is not about charity.

Fairness is about being responsible with your resources, in allocating them in such a manner that all parties agree—not on the decision, but on the process.”

Roberto Iunes

It is possible, Cubillos posited, to have two completely different outcomes which whilst opposite could both be deemed fair. “Fairness is not about the ultimate outcome – it is also about the process.”

Patients across the world deserve “the care they need and no less, the care they want and no more,” said Albert Mulley, director of the TDC, in his talk to Fellows about the role of shared decision making in realizing the right to health. Patients should have access to the health care they need, but shouldn’t be made to accept treatment they don’t want.

Margot Igland Skarpeteig

“You have to recognize that different patients have different risk attitudes,” said Mulley.

What works for one patient, won’t necessarily be what another wants owing to their

Individuals often “delegate decisionmaking power to

others. We trust mechanics to fix cars without needing all the info, so why don’t we expect the same of our doctors?

Actually, there’s good reason...

”

Roberto Iunes Senior Health Economist, World Bank Institute

Fellows rated the health care provision in their own countries and addressed the challenges to realizing the right to health

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Realizing the Right to Health Session Report 500

Individual “litigation is not

own circumstances, and doctors should recognize the patient’s decision and personal expertise in their own condition and care.

a solution but it can serve a useful purpose when the health care system doesn’t work. People mistakenly assume that judges have the last word, but there’s rarely a last word. There has to be dialogue.

One way to ensure the process of a health care decision is fair and also enables the patient to make the most-informed decision they can about their own care is to make the treatment availability and decision-making process as transparent as possible. But even this is no panacea.

“You can’t just dispense transparency – you must consider the reception of the information!” exclaimed Salzburg Global Seminar program director, John Lotherington.

Better – not just more – Information By empowering patients with understandable information, rather than just simply abundant information, those patients in turn would be better able to make wellinformed decisions not only about their own health care, but also that of their communities.

”

Siri Gloppen Professor at University of Bergen, Norway

The reverse of this, Lotherington pointed out, was visible in the MMR-Autism panic in the UK. A misleading and since disproven article relating the measles, mumps and rubella (MMR) vaccine to the increasing prevalence of the developmental disorder, autism, invoked panic in many parents who thus chose not immunize their children against three highly contagious diseases, potentially putting their children and the wider community at risk of infection.

Empowering communities needn’t come only through informational leaflets and talks, Fellows were told during the week. In one of the more interactive sessions of the seminar, Fellows heard from Mary Flanagan of Dartmouth College’s Tiltfactor – a “interdisciplinary innovation team” that designs and studies “games for social impact”.

By developing games such as ‘ZombiePOX’ – a game that challenges players to stop the spread of zombies through their community – players of all ages can learn and understand concepts such as systems thinking, resource allocation, strategic vaccinations and herd immunity.

Jaime Bayona

Fellows themselves took part in a Tiltfactor designed game called ‘RePlay Health’, designed to help players understand the impact of different events and situations can have on health conditions, as a level playing field start to quickly reflect the unequal conditions many people face in the attempts to lead healthy lives.

As informative as the lectures, discussions and games were, the Right to Health Fellows were brought to Schloss Leopoldskron not just to listen and play, but to plan and do.

Siri Gloppen

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Realizing the Right to Health Session Report 500

The hastily thought of initiatives from the end of their ‘RePlay Health’ game provided some with a starting point as the Fellows spent the last two days of the seminar developing and refining plans for initiatives they could launch in their home countries or regions.

Mary Flanagan

“

We have to ‘unlock’ the potential for us to be partners in order to make sure that health care is delivered

”

Ellen Strahlman Senior Vice President, GlaxoSmithKline

Fellows identified what challenges they identified in their countries and regions, then moved on to rapid cycle prototyping by building models of their solutions from Lego bricks and character pieces to find solutions and new initiatives to their challenges

Building more than just Lego Working through a process called ‘rapid cycle prototyping’, the Fellows didn’t head straight to the seemingly ubiquitous flip charts, so favored throughout the week by seminar facilitators Reos; instead facilitators Joe McCarron and Zaid Hassan led the Fellows in building Lego models of their potential solutions. But as McCarron pointed out, the Fellows were building much more than just Lego models.

“When you have a short amount of time and a diverse group of people, working on a complex project, a methodology that uses your head and your hands is much more effective in creating the early seeds of ideas than having a bunch of people negotiate around a flip chart,” explained McCarron. “The intangible element of what we were doing today is how you build commitment and how you build emotional attachment to these ideas.”

And these ideas will need commitment. Ranging from plans to improve governance in the health care system by involving the local communities in post-revolution Egypt; to a ‘Open Healthcare Info Bank’ – a platform for collecting, validating, processing and delivering health information, which would verify the amount, content and quality of the information, with the objective of enabling informed and knowledgeable decisionmaking in South Korea; plans to reorganize the procurement and distribution of

Ellen Strahlman

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Realizing the Right to Health Session Report 500

Ideas don’t “happen because they’re good; they happen because people believe in them

Fellows line up to toss their bean bag to earn points per throw and determine their health future. After playing their role

”

medicines in the Brazilian state of Minas Gerais to ensure “the right medication, [get] to the right people at the right time”; and a cross-national group aimed at improving women’s health in Africa through greater social participation in health care delivery, the plans are nothing if not ambitious.

Zaid Hassan Founding Partner and Facilitator, Reos Partners

These plans all aim to meet a so far unmet need – stopping corruption in Nepal, improving efficiency and coverage in Mexico, increasing affordability of medicines in East Africa, and so forth – but they have been developed with specific “next steps”, methodologies and well-placed team-leaders in mind. The teams of Fellows have made commitments to each other to carry their proposals forward, with many opting to use the newly launched Salzburg Global Fellowship Yammer Network – a social network platform exclusively for SGS Fellows – to help co-ordinate and implement their plans.

The teams certainly haven’t been alone in putting together their plans. By repeatedly presenting their projects to their peers during the rapid cycle prototyping exercise and receiving feedback from the whole group each time, the Fellows’ projects have gone from being built by five people to 50 thanks to the constant input, explained McCarron.

They’ve also received feedback from two world-renowned experts in health care delivery – Jim Yong Kim, president of the World Bank and former president of Dartmouth College, home of the Dartmouth College for Health Care Delivery Science, and Binagwaho, who joined the Fellows again at the end of the week to dispense her advice. Kim praised the Fellows on their efforts, with Binagwaho offering to continue giving help and support online.

Joe McCarron

Only time will tell which of these projects eventually come to fruition, but as Hassan said at the end of the week’s presentations: “Ideas don’t happen because they’re good; they happen because people believe in them.”

Let’s hope their belief in their projects continues long after the Fellows pass back through the iron gates of Schloss Leopoldskron.

Zaid Hassan

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Realizing the Right to Health Session Report 500

Participants of Session 500 by Country or Region AUSTRALIA

MEXICO

UGANDA

Lloyd Sansom

Nelly Aguilera Gabriela Alarcon Esteva Ignacio Ibarra Panagiota Panopoulou (GREECE ) Blanca Rico (SPAIN )

Diana Kadama Christina Ntulo

BRA ZIL

Luiz Conde Evangelina Duarte Vania Rabello Jo茫o Soares

MOROCCO CHILE

Jaime Burrows Oyarzun Rodrigo Salinas COSTA RICA

Ana Virginia Calzada Alvaro Salas-Chavez

Imane Tellou Nepal Bhimarjun Acharya Bishnu Bastola Kabiraj Khanal Apar Poudel

Salzburg Global Seminar Staff Clare Shine

UNITED KINGDOM

Claire Cheong-Leen Tijana Duric Benedict Rumbold Ellen Strahlman (USA ) Anne Winter

Vice President & Chief Program Officer

John Lotherington Program Director

Ginte Stankevicuite Program Associate

Robert Fish Associate Drector of Communications

URUGUAY

Silvina Echarte Leticia G贸mez Santiago Pereira Campos Eduardo Vazquez

Louise Hallman Editor

Sofia Azar Program Intern

NORWAY EGYP T

Maha El Rabbat Alaa Eldin Gannam Ayman Sabae Amr Sayed Ahmed

Siri Gloppen Margot Igland Skarpeteig PERU

GEORGIA

Miguel Garavito Farro Walter Humberto Castillo Tatiana Vidaurre

Miranda Akhvlediani Irakli Katsitadze

REPUBLIC OF KOREA

IRAN

Pedram Shandi ISRAEL

Joung Hyun Kim Kyuri Kim Younghwan Seo Mansuk Sung Taemin Woo

Sharon Bassan RWANDA KENYA

Ann Njogu Owino Okenda

USA

Jaime Bayona (PERU ) Shoubin Chen Leonardo Cubillos (COLOMBIA ) Mahnu Davar Maria-Luisa Escobar (COLOMBIA ) Felipe Estefan (COLOMBIA ) Kristie Foley Mary Flanagan Roberto Iunes (BRA ZIL ) Daniel Lee Joseph McCarron Albert Mulley Max Seidman

Beatrice Kagoyire Emmanuel Kamonyo Jules Ngoga Jean Pierre Nyemazi SOU TH AFRICA

Lulama Sisagana

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Realizing the Right to Health Session Report 500

Salzburg Global Seminar Staff Stephen L. SALYER, President & Chief Executive Officer Patricia BENTON, Chief Financial Officer Clare SHINE, Vice President & Chief Program Officer

Program and Administrative Staff

Schloss Leopoldskron Conference Center Staff

Kathrin Bachleitner, Program Associate Thomas Biebl, Director, Marketing and Communications Rachel Feldman, Philanthropic Partnerships Associate Robert Fish, Associate Director, Communications Jochen Fried, Director of Education Joana Fritsche, Program Sales Manager David Goldman, Associate Director of Education Louise Hallman, Editor Astrid KoblmĂźller, Program Manager Camilla Leimisch, Assistant, Registration Department Tatsiana Lintouskaya, Program Director John Lotherington, Program Director Susanne Madigan, Assistant to the President Sharon Marcoux, Financial Associate Paul Mihailidis, Program Director, Salzburg Academy on

Richard Aigner, Conference and Event Manager Margit Fesl, Housekeeping Manager Markus Hiljuk, Director, Conference Center Florian Hoffmeister, Service Manager Edith Humer, Administrative & Event Assistant Ernst Kiesling, Catering Manager Alexander Poisel, Receptionist Alexander Reigl, Receptionist Matthias Rinnerthaler, Superintendent Shahzad Sahaib, Night Porter Karin Schiller, Sales Manager Andrea Schroffner, Conference and Event Assistant Nadine Vorderleitner, Conference & Event Assistant Christine Wiesauer, Front Office Manager Veronika Zuber, Receptionist

Media and Global Change

Edward Mortimer, Senior Program Advisor Bernadette Prasser, Program Officer Michi Radanovic, Assistant Director Finance & HR Assistant Ursula Reichl, Assistant Director Finance Manuela Resch-Trampitsch, Director Finance Marie-Louise Ryback, Director, Holocaust Education and Genocide Prevention Initiative

Seminar Interns Sofia Azar, Program Katharina Schwarz, Research Jack Stauss, Program Heidi Downing, Library

Karen Schofield-Leca, Director, Philanthropic Partnerships, US Astrid SchrĂśder, Program Director, International Study Program Susanna Seidl-Fox, Program Director, Culture and the Arts Nancy Smith, Director, Gender and Philanthropy Gintare Stankeviciute, Program Associate Julia Stepan, Program Associate John Tkacik, Director, Philanthropic Partnerships, Europe Cheryl Van Emburg, Director of Administration

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Realizing the Right to Health Session Report 500

ABOU T THE REP ORT CONTRIBU TORS:

John Lotherington is a program director at the Salzburg Global Seminar, with particular responsibility for the SGS health care programs. Prior to that, he was director of the 21st Century Trust in London. He began his career in history education and maintains an interest in that area. His publications as editor and author include The Communications Revolution; Years of Renewal: European History 1470-1600; The Seven Ages of Life; The Tudor Years; introductions to The Florentine Histories by Niccolo Machiavelli, The Book of the Courtier by Baldassare Castiglione, and Inferno by Dante Alighieri. He is chair of the Foundation for Democracy and Sustainable Development and a Fellow of Goodenough College in London.

Louise Hallman is the editor at Salzburg Global Seminar, where she manages online and print editorial content as well as other in-house journalism and marketing projects. In her role she creates, commissions and edits content for SalzburgGlobal.org, manages social media platforms, contributes articles and features to external publications, and liaises with visiting members of the press. Ms. Hallman holds Master’s degrees in international relations and Middle East studies from the University of St. Andrews and multimedia journalism from Glasgow Caledonian University.

Prior to joining SGS in April 2012, she worked for WAN-IFRA as the manager and publication editor for the SIDAfunded ‘Mobile News in Africa’ project and the International Press Institute, as a press freedom advisor and in-house journalist, where she focussed on Latin America and Europe.

www.salzburgglobal.org/go/500

Salzburg Global Seminar is grateful to the following donors for their generous support of Session 497 The World Bank Institute The Dartmouth Center for Health Care Delivery Science Dr. Ernst A. Bates, M.D. BMWF - Bundesministerium für Wissenschaft and Forschung Capital Group Companies Claudio X. Gonzalez The Korea Foundation The Nippon Foundation Oesterreichische Nationalbank WEM Foundation Salzburg Global Seminar would like to thank the Session speakers for their assistance in developing this program and for generously donating their time and expertise, and to all the participants that contributed their intellectual capital and superior ideas.

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Ginte Stankevicuite

Clare Shine

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Vice President and Chief Program Officer

jlotherington@salzburgglobal.org

gstankevicuite@salzburgglobal.org

cshine@salzburgglobal.org

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