Multi stakeholder involvement in setting the medical research agenda
Posted by King Baudouin Foundation on 01 Jun 2016
Research agendas for health and biomedical research are usually determined by the priorities of researchers, academia and sponsors. But do these agendas really match the demands in society and the needs of the users of the research results? These users - patients, taxpaying citizens, but also caregivers, health professionals, governmental reimbursement agencies, private insurers - are seldom involved in setting research agendas. Thus, the specific knowledge and expertise of these groups is undervalued and underused.
At the same time, the burden of disease remains high, even in industrialized countries with well-functioning healthcare systems. Despite the vast expenditure on health research, many medical needs are still unmapped. Moreover, research aimed at finding appropriate solutions can be improved by reprioritizing research agendas.
Multi-stakeholder involvement in the programming of research is one way of allowing silent but concerned parties to have a voice. It is an iterative, inclusive, participatory, multi-actor process in which researchers, patients, members of the public, but also caregivers (informal and formal), governmental representatives, and sponsors, work together to prioritize, plan, conduct and disseminate research priorities and contexts. As such, it goes beyond patient and public involvement or end-user engagement. Multi-stakeholder dialogues tackle the very ‘upstream’ element of research whereas many patient participation initiatives and other stakeholder engagement initiatives tend to focus on later stages.
The aims of multi-stakeholder dialogues in research agenda setting are to increase benefits for people and society, to enhance the efficient use of limited resources, to improve accountability and governance of public expenditure, and to harmonize applied health and fundamental biomedical research. It therefore seems to make sense to involve more stakeholders in research agenda setting.
In order to explore and learn from existing inspiring practices the Belgian King Baudouin Foundation organized a workshop in November 2015. Experts from several European countries gathered and shared their experiences with researchers, patients, patient organizations, care providers, pharmaceutical companies and research funding bodies from Belgium. This resulted in the online available inspiration guide Mind The Gap! Multi-stakeholder dialogue for priority setting in health research.
This report shows the outcomes of the meeting and a number of the lessons learned. The report sets out the various examples and methods that were contributed by the experts, and also includes the results of the discussions with the participants. It shows a number of the key elements for setting up a successful multi-stakeholder dialogue: Who are the obvious and also the less obvious stakeholders? What are the benefits and what pitfalls need to be avoided? And what ingredients are required to make a dialogue successful in terms of prioritizing the various research themes?
It will be clear from the outset that there is no standard all-embracing model available that makes it possible to structure such a dialogue, and that not every dialogue results in radical changes. This guide is intended above all to encourage you to step aside, think out of the box and take a new and open-minded look at the opportunities and priorities that exist in scientific medical research.
Stimulated by the positive feedback we received from participants in the research and research funding communities the King Baudouin Foundation decided to take additional steps and explore this topic in more detail. We kindly invite you to read, share and maybe enrich our search for the optimal use of multi-stakeholder dialogues and patient and public engagement in setting future research agenda’s.
Bénédicte Gombault and Sara Heesterbeek
Bénédicte Gombault and Sara Heesterbeek work on RRI Tools at the King Baudouin Foundation in Brussels, the RRI Tools Hub coordinator for Belgium and Luxembourg.