17th Forum – Montreux, Switzerland, 28-29 November 2023

Theme of the Meeting
Ethics of health research priority setting
Organisers

 

The World Health Organization

 

Supported by:

  • The Wellcome Trust
  • Medical Research Council-United Kingdom (MRC UK)
  • National Institutes of Health-Fogarty International Center (NIH-FIC)
  • The South African Medical Research Council

Planning Committee

Members of the Planning Committee for this meeting were:

  • Nicola Barsdorf, Head, Health Research Ethics, Faculty of Medicine & Health Sciences’ Research Development & Support Division, Stellenbosch University, South Africa
  • Soumyadeep Bhaumik, Co-Head, Meta-research and Evidence Synthesis Unit; Senior Research Fellow, Injury Division, The George Institute, India
  • Claudia Chamas, Professor of Health and Intellectual Property, Institute of Economics and Oswaldo Cruz Foundation (Fiocruz), Brazil
  • Toto Gronlund, James Lind Alliance Adviser (National Institutes for Health Research), UK)
  • Sharon Kaur, Senior Lecturer, Faculty of Law, Universiti of Malaya, Malaysia
  • Francis Kombe, CEO EthiXPERT, South Africa
  • Joe Millum, Senior Lecturer, Department of Philosophy, St. Andrews University in Scotland.
  • Mona Nasser, Professor, Clinical Epidemiology and Oral Health Research, University of Plymouth, UK
  • Bridget Pratt, Mater Senior Lecturer in Healthcare Ethics, Queensland Bioethics Centre, Australian Catholic University, Australia
  • Ludovic Reveiz, Advisor, Department of Evidence and Intelligence for Action in Health, Pan American Health Organization, USA
  • Annette Rid, Bioethicist, Department of Bioethics, NIH Clinical Center & NIH Fogarty International Center, USA
  • Katherine Littler, Global Health Ethics & Governance Unit, WHO, Switzerland

Programme and Presentations

Programme details

The meeting agenda is available here and the individual papers and presentations can be found below.

 

Presentations

Videos of the plenary presentations are here.

 

Keynote

Joseph Millum, University of St Andrews, UK (slides)

 

Pecha Kucha – session 1

Chair: Phaik Yeong Cheah, Mahidol Oxford Tropical Medicine Research Unit, Thailand

 

Empowering communities in research – a model for shared decision-making and research priority setting in a rural population during a public health emergency

Margaret Kaseje – Tropical Institute of Community Health and Development, Kenya (case study, slides)

 

Ethical issues in relation to engagement and involvement of marginalized and vulnerable groups in setting health research priorities 2013-2018, Tanzania

Emmanuel Makundi – National Institute for Medical Research, Tanzania (case study, slides)

 

The ethics of the Philippine National Health Research System’s (PNHRS) 2017-2022 National Unified Health Research Agenda (NUHRA)

Daphne Maza – Philippine Council for Health Research and Development, Philippines (case study, slides)

 

Consideration of values when setting research priorities: a value-oriented guidance tool for priority-setting exercises

Wim Pinxten – Hasselt University, Belgium (case study, slides)

 

Conducting high priority research in over-researched communities in Pakistan: the ethical burden

Sualeha Siddiq – Sindh Institute of Urology and Transplantation, Pakistan (case study, slides)

 

Contribution of public universities to tackle leading causes of mortality in Ecuador: Evidence based on 100 years of scientific production

Ivan Sisa – Universidad San Francisco de Quito USFQ, Ecuador (case study, slides)

 

Upholding autonomy and beneficence in research priority setting exercises in Ghana

Benedict Weobong – University of Ghana, Ghana (case study, slides)

 

Theme 1: Reflections from three national research priority setting exercises: stakeholder inclusion, transparency and evidence

Introduction to the theme
Soumyadeep Bhaumik, The George Institute, India

 

Re-imagining the ethics and the utility of existing frameworks for research priority setting: a case study of the family planning research and learning agenda in Uganda

Suzanne Kiwanuka – Makerere University, Uganda (case study, slides)

 

An assessment of the priority setting exercise for health research in Peru

Ramon Ponce Testino – Pontifical Catholic University of Perú, Peru (case study, slides)

 

Balancing ethics and stakeholder interests: insights from Malawi

Sibongile Kaphaizi – Ministry of Health Research Department, Malawi (case study, slides)

 

 

Theme 2: Amplifying marginalized voices in research prioritisation: The James Lind Alliance approach

Introduction to the theme
Toto Gronlund, James Lind Alliance Adviser (National Institutes for Health Research, UK)

Bridget Pratt, Australian Catholic University, Australia

 

‘Decentralized priorities for central schemes’: experience of Department of Health Research’s prioritization exercise for the Model Rural Health Research Units across India

Jaya Singh Kshatri – Indian Council of Medical Research, India (case study, slides)

 

Women’s pelvic floor disorders, Gondar, Ethiopia JLA Priority Setting Partnership

Zelalem Gashaw – University of Global Health Equity, Rwanda (case study, slides – warning: slides contain explicit image of pelvic floor disorder)

 

Funder panel

Chair: Ludovic Reveiz, Pan American Health Organization, USA

 

Panellists:

  • Michael Makanga, European & Developing Countries Clinical Trials Partnership, Belgium
  • Carleigh Krubiner, Wellcome, UK
  • Mongezi Mdhluli, South African Medical Research Council, South Africa
  • Barbara Sina, Fogarty International Centre-National Institutes of Health, USA

 

Questions discussed:

  1. Do you see changes to the way your organization is considering research priority setting/agenda setting?
  2. When does research priority setting take place in your institution? Who is involved in the process?
  3. Are there limitations/pinch points in terms of funders obligations in terms of priority setting (i.e. public funder, limitations put upon by mandate or governments)? How do you build these into your decision-making processes?

Summary of day 1 (video only)

  • Francis Kombe, EthiXPERT, South Africa
  • Ana Palmero, Consultant, World Health Organization, Argentina

 

 

Pecha Kucha – session 2

Chair: Mona Nasser, University of Plymouth, UK

 

Mitigating disparity by harnessing fair process in heath research priority settings: what India might learn from It?

Abhishek Ghosh – Postgraduate Institute of Medical Education and Research, India (case study, slides)

 

Ebola Virus Disease outbreak response in West Africa

Edward Kusewa – St Paul’s University, Kenya (case study, slides)

 

Need for awareness among funders, grant proposal reviewers, researchers and research ethics committees about ethical priority setting for research

Valerie Luyckx – University of Zurich, Switzerland (case study, slides)

 

Lack of research of an endemic noncommunicable disease in Honduras: the case of Mesoamerican Nephropathy (MeN), a bioethical perspective

Guimel Peralta – Central American Technological University, Honduras (case study, slides)

 

Ecology of engagement. A model for prioritizing research in mental health

Iliana Romero – Colectivo de Salud Mental TLP, Mexico (case study, slides)

 

Prioritizing rare inherited diseases research in lower and middle income countries: the ethical dilemmas of cochrane evidence synthesis

Teguh Sasongko – International Medical University, Malaysia (case study, slides)

 

Theme 3: Governance of research priority setting: the role and responsibility of government

Introduction to the theme
Sharon Kaur, Universiti of Malaya, Malaysia

 

Prioritizing health research in KwaZulu-Natal, South Africa: who sets the priorities, and how are they translated into research conducted?

Gugulethu Khumalo – KwaZulu-Natal Department of Health, South Africa (case study, slides)

 

Health research priority setting experiences from Uganda, Tanzania and Zambia

Lydia Kapiriri – McMaster University, Canada (case study, slides)

 

Ethical challenges and improvement pathways: a case study on health research priority setting in the Philippines

Joseph Oraño – Alliance for Improving Health Outcomes, Philippines (case study, slides)

 

Theme 5: Ethical and practical challenges to research priority setting

Introduction to the theme
Annette Rid, Department of Bioethics, NIH Clinical Center & NIH Fogarty International Center, USA

 

The US-Kenya Partnership: A model North-South ‘unequal friendship’ in health research where a balanced priority setting remains but a mirage

David Nderitu Wanjeri – Egerton University, Kenya (case study, slides)

 

Health research priorities in low resource settings – perspectives from rural North-east India

Starlin Mythri – Makunda Christian Leprosy and General Hospital, India (case study, slides)

 

‘Deliverability of interventions’ as a criterion in priority setting for health research: the case of H3Africa and gene-based interventions

John Barugahare – Makerere University, Uganda (case study, slides)

 

Concluding comments and best presentation awards (video only)

  • Anant Bhan, Yenepoya (deemed to be University), India
  • Teck Chuan Voo, National University of Singapore, Singapore

 

Reports
A background paper was prepared in advance of the meeting and provides an overview of the key ethical issues raised by this important topic.

 

This report summarises the meeting presentations and the range of views that were expressed, while a separate policy overview draws together the cross-cutting themes.

 

We are very interested to hear about participants’ post-meeting activities. Please do keep us up-to-date by emailing gfbr@who.int.



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