Call for case study presenters : The ethics of health research priority setting

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Background

GFBR is seeking two types of participants for the meeting:

Places are awarded on a competitive basis and successful applicants from LMICs will receive an award to cover the cost of their travel, accommodation and single-entry visa.

All interested applicants should review the information below and apply no later than 15 May 2023; case study presenters will submit proposals with their applications. All applications will be reviewed by the GFBR Planning Committee and selection will be made on the selection criteria (see below). Applicants are not limited to academic researchers; staff from government, non-governmental organizations (NGOs), and private sector organizations are also encouraged to apply if their applications are focused on the topic. If a case study is multi-author, and co-authors would like to attend, they must apply separately as participants and state the name of their co-author and title of the case study in their application.

During GFBR, case study presenters from around the world will share their presentations and discuss cross-cutting issues, and then participants at the meeting will discuss the challenges and questions raised in both plenary and small group discussion.

About the topic

Please read the background paper for full details on the meeting topic and scope.

Topic summary

Health research is a vital component of efforts to improve health worldwide. But the available resources and existing research infrastructure are unable to answer all important research questions in a timely manner. Since which research is conducted affects which populations ultimately benefit from the knowledge generated by the research, the question of how to allocate limited health research resources is an ethical question, not just a technical one.

At present, many governmental and non-profit funders still treat the allocation of much of their research funding as a primarily technical question. For example, untargeted grant funding is largely allocated on the basis of the quality of the science, not on the basis of disease burden or whether it addresses the outcomes patients care about. Meanwhile, existing market incentives mean that for-profit funders mostly aim to develop drugs and devices for wealthier patient populations. When funders do explicitly set priorities for which health problems or types of research they will fund, the methods used for setting those priorities are often opaque. Nor are funders the only parties who affect what research gets carried out. Individual researchers, university officials, advocacy organizations, policy-makers, and many others make decisions about research priorities, even when they do not label themselves as engaged in “priority setting.” The lack of coordination among all these actors makes it likely that resources are globally misallocated and exacerbates the problem of wasteful research. Overall, it is unlikely that research priorities are currently being set in an ethically optimal way. 

The importance of research priority setting became especially salient during the COVID-19 pandemic, but, as a global issue, it pre-dates and post-dates the pandemic. The perpetual scarcity of resources for research requires ongoing, difficult decisions about what should be prioritized, who should benefit from research outputs, and who gets to decide these matters. By promoting a global discussion on the ethics of research priority setting, the Global Forum on Bioethics in Research (GFBR) aims to move the debate beyond identifying injustices and move towards solutions that are ethically informed, sensitive to context and pay attention to the real-life constraints the different actors involved in research face.  

Please note that the actual themes considered at the meeting will be defined by the case studies that are submitted. In this way, GFBR aims to be responsive to applicants and the issues that they consider most important.

Call for case study presenters

The GFBR organisers are looking for interesting and important real-life cases that are relevant to the topic. The cases could demonstrate the development of good practice; highlight ethical challenges; or present unresolved questions for the global community.

Scope and themes

For the purposes of this meeting, health research priority setting will be interpreted broadly. Please read the background paper for preliminary definitions of ‘health research’ and ‘priority-setting’ and corresponding statements of the scope of the meeting topic. Please note that a case on health care priority setting is not in scope.

We are interested in receiving case studies from a variety of perspectives and contexts and on a broad range of issues. Examples might include:

• ethical issues arising when designing or conducting a research priority-setting exercise;
• perspectives from funders, researchers, or policy makers on how they develop their priorities;
• conflicts between global and local priorities;
• best practices for including patients, carers, clinicians, citizens, or other stakeholders;
• novel grants mechanisms that address shortcomings of traditional models;
• trade-offs between allocating resources to implementation versus research;
• methods to incentivize research on neglected diseases; or
• decolonization in global health research.

This list is illustrative and non-exhaustive. 

GFBR addresses a different topic each year. To promote continuity the organisers encourage cases that address past GFBR topics[1]. However, this is not a requirement.

[1] For example, mental health research, genomics, research during epidemics, novel trial designs (e.g. adaptive trials). For the full list of past topics see: www.gfbr.global/past-meetings. 

Inclusion and fair processes

• Who should be included or represented in the process of setting research priorities? How should they be involved (e.g., surveys, deliberative panels, etc.)? At which stage of the process?
• If priority setting exercises should be constrained by specific substantive criteria, who should decide on the criteria? Do some groups have, due to their knowledge or lived experience, any special authority regarding the values that apply?
• What are good models for sharing power with patients, carers, or community members in research priority setting exercises? How do we ensure that there is real shared decision making and move away from tokenistic approaches?
• How can decision-makers remove power imbalances and inequalities that may impact the ability of certain groups to participate fully in research and benefit from its outcomes?
• Who ought to make decisions about what research gets done?
• How do we ensure that the needs of neglected populations are taken into account in decisions about what research is conducted?
• How transparent do priority setting exercises need to be? What form should this transparency take?

Criteria and goals

• Should research priority setting take account of the implications of research for health care costs (e.g., in the development of expensive new technologies)?
• Given that innovation often occurs unexpectedly (especially for basic research), should funds always be allocated according to research priorities?
• How should priority setting take into account conditions and diseases which disproportionately affect neglected populations, which do not have the potential to generate lucrative markets for treatment?
• Should research priority setting take account of the environmental implications of research (e.g., by giving lower weight to projects with a big environmental footprint)?
• Should research priority setting take gender into account? If yes, how?
• Should the nature of a funding body (e.g., national, regional, global, public/private) affect which populations it prioritizes?
• Is it appropriate to provide incentive schemes to encourage privately-funded research to have a fairer research agenda (e.g., encouraging private funding research into rare diseases)?
• Some organizations provide or fund care as well as conducting research. How should resources be allocated between the provision of care and the collection of data? To what extend should resources be allocated to ancillary care, at the expense of conducting research?
• How should comparative judgments be made about the social value of research (e.g., likelihood, magnitude, distribution of potential health benefits)?
• How should we take account of benefits of research beyond those that result from the information generated (e.g., research capacity building)?

Global and local

• Sometimes the priorities of health research funders do not align with the priorities that have been set in a national priority setting exercise. How should such conflicting priorities be resolved?
• What form should the decolonization of health research take in health research priority setting? How should the legacy of colonialism in health research be recognized and addressed?
• How should unfair power dynamics between HICs and LMICs in research priority setting be reduced (e.g., lack of representation, control over funding, exploitation of research participants)?
• What role should local governments (especially in LMICs) play in funding health research and aligning health research with national priorities?
• How does injustice related to knowledge (e.g., the unjust exclusion of certain agents from the production or dissemination of knowledge) affect priority setting and how can its effects be mitigated?

Governance

• How should health research funders coordinate their global efforts?
• What alternatives to evaluating grant applications through peer review exist? Can these alternatives be shown to be more efficient or more equitable?
• Which approach for research priority setting would be most appropriate to strengthen regional priorities and optimize resources in favour of common interests and neglected populations within a region?
• How should potential conflicts of interest be managed in priority setting?
• How can the success of health research priority setting be evaluated?
• How much time and resources should individuals and organizations put into priority setting?

Example case studies can be found in this past GFBR meeting programme.

How to apply

Case studies should be 2 pages maximum (excluding references), font Arial size 10.5 (in Microsoft Word or pdf format), clearly articulated in English and contain the following sections:

1. Title of case
2. Your name, institution and country location
3. Brief description to help the reader understand the context of the case
4. Ethical issues with commentary on each issue (see themes and questions above)
5. Conclusions and two recommendations for how to improve the ethics of, and ethical approaches to, health research priority setting.
   

In addition, please provide the following information, in Microsoft Word or pdf document using font Arial size 10.5. Please do not share sensitive personal health information.

• Complete case study application form
• Short CV (2 pages maximum)

If you are unsure about the suitability of a possible case study or would like to discuss your proposal, please email [email protected].

Successful case studies

Selected case studies will be grouped into thematic sessions (see last year’s GFBR agenda as an example). The presenters will be paired with a member of the GFBR Planning Committee to provide informal mentorship and help them develop their case into a brief paper (2-3 pages) and a PowerPoint presentation. We aim to arrange at least one Zoom call for the session mentor and presenters to meet to discuss their case studies and collaboratively develop the session theme.

Deadline 

Awards: Decision making and eligibility for funding

Successful applicants from LMICs who require full funding will receive an award to cover:

• return travel to the meeting (economy airfare and standard ground transportation costs);
• accommodation (2 or 3 nights maximum, including meals);
• a single entry visa (if required).
  

  Participants will be expected to meet all other costs.
  

  The GFBR Planning Committee will select successful candidates (both self-funded and those applying for funded places). The selection committee will consider the following factors when considering the applications:

• Country of origin. We would like to ensure a representative distribution of participants from different regions;
• Background/current area of expertise. Applications will be selected for a diverse representation of many different disciplines, relating to the theme of the meeting;
• Experience or demonstrated interest in the ethical issues related to health research priority setting;
• Reasons for attending the meeting. Participants who will be able to actively contribute to the meeting and who expect to achieve impact from the meeting;
• Case study applications only: Relevance of the case to the meeting theme and the LMICs context;
• Journalists only: Demonstrated journalistic training and experience and concrete proposals for how the meeting findings will be disseminated, including which media outlets and the format of reporting.

If your case study is not selected your name will automatically go forward to be considered in the applications to attend as a participant. Applicants are encouraged to submit a case study. 

Notification

All applicants will be informed of the Planning Committee’s decision by the 20 July 2023. The decision of the committee will be final.

Privacy

The application form describes the purposes for which WHO will collect and process the personal data you provide in your application and describes your rights as a data subject. WHO’s personal data protection framework includes the WHO Privacy Policy available at https://www.who.int/about/who-we-are/privacy-policy) and the UN Personal Data Protection and Privacy Principles, which are available at the following link: https://archives.un.org/sites/archives.un.org/files/_un-principles-on-personal-data-protection-privacy-hlcm-2018.pdf

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