11 January 2019
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Treasuring hard won citizens' trust

Panel discussion at next week’s Health-RI Conference (Jan 17, 2019) will formulate ideas and encapsulate opinion on the need for collective decision-making to engender trust and transparency in P4 Health research.

Like P4 Health itself, the research needed to bring P4 Health to reality should be highly participatory, involving citizens and patients at every stage in the research process. After all, if you don’t consult the people who suffer the debilitating consequences of a disease, how do you know that your research agenda is really targeted at meeting their needs? Getting their buy-in at an early stage in the research process and maintaining their involvement is one of the best ways of gaining their trust, which means when it comes to putting together clinical trials, it will be easier to persuade them to enter your patient cohorts. That’s a real plus, because more patients means more data and greater reliability in your results. But that data also comes with risks. Abusing it, or failing to ensure its privacy and security, means the trust you have built up over years of research could be lost overnight.

These are key issues that will be discussed in the Participatory parallel session at next week’s Health-RI conference in Utrecht. The session is introduced as: ‘Participation of individuals, public trust and societal involvement is essential for P4 research. Learn how to organize participation in research and build mutual trust’.

The session, which will be moderated by Prof. Dr. Gerlof Valk, Professor of Endocrinology at University Medical Center Utrecht and Scientific Director of the Parelsnoer Institute, is not only designed to be informative but also to collectively arrive at a statement that encapsulates opinion on whether ‘For real transparency about research goals, approaches and results, collective decision-making with all stakeholders is essential.’ Formulating the statement will be conducted via a panel discussion, including input from the audience, with before and after voting to gauge people’s ideas, reactions and changes of opinion.

To highlight some of the issues, the panel discussion will be preceded by presentations titled ‘Do clinical research together!' and ‘Research integrity, transparency and data’, given respectively by Prof. Dr. Peter Paul G. van Benthem, Professor and Chair of the ENT department at Leiden University Medical Center and member of the board of the Dutch Association of Medical Specialists, and Lex Bouter, Professor of Methodology and Integrity at VU University Medical Center Amsterdam. Both speakers will then join the panel discussion, along with representatives from the BBMRI Patient and Public Advisory Council (Maatschappelijke Adviesraad Biobankonderzoek), including Eric Vermeulen from the VSOP Dutch genetic alliance, who is an expert on feeding back research results to patients.

If you’ve registered to attend the session on January 17th, spare a few moments beforehand to formulate your ideas so that you can put them forward in what promises to be a valuable debate that lies at the heart of P4 Medicine. (Registration is still possible.)

If you’re not attending, the conclusions of the panel discussion will be available on www.health-ri.org after the event.

Hard won citizens' trust