Patients are the end users of health research; however, they are still rarely implicated in health research. In the 80’s HIV patients have revolted against this position and have invited themselves to scientific conferences and they have contributed to a major change in patient involvement in HIV -research. How have other fields of biomedical research, like rare disease research or cancer research, been inspired by this unique experience?
Patient engagement in health research is being increasingly recognised by the different stakeholders (industry, patients and citizens, researchers and policy makers) and the benefits for the different stakeholders to work with patients are quite well established: more relevant research priorities from the outset, patient-relevant research methods and findings. Meetings with patients can also motivate scientists and facilitate the interaction between clinicians and scientists.
At what step can patient participate in research?
Patient could participate in research priority setting; indeed, patient’s associations can ask their members what priorities in research should be to improve their quality of life and transmit these priorities to researchers. They can also influence funding organisations to fund research that is the most important for them.
Patients could also advise researchers on research design and planning, in order to facilitate the participation of patients thanks to their specific knowledge about their care, treatment and lifestyle.
They can also facilitate research implementation, for example by advertising clinical trials and so facilitate the recruitment of patients.
Finally, patients have a major role in communicating the end results of research to a broader audience than the one targeted by scientific publication.
How does the digital era change the interface between patients and researchers?
It is clear that information technology can simplify a lot the interaction between the various stakeholders.
Specific platforms already facilitate the recruitment of patients for research (e.g. Seintinelles), others allow to collect health data for patients living with chronic diseases (e.g. Compare) or gather research ideas for researchers (Inspire). Furthermore, social networks help the dissemination of research results. In the future we can imagine that a dynamic electronic informed consent tool can manage the interplay between patients and researchers and allow patients to keep track and share more easily their health data and samples with various researchers.
The Debate at ESOF
A special panel at ESOF will discuss these issues in Toulouse on July 10th.
The round table will gather various experts in researcher-patient interactions in France, the Netherlands and the UK. The format of the round table will be a fish bowl allowing anyone in the audience to enter the round table and share his/her experience. The session will map the current state of the art, benchmark governance setting and identify drivers and barriers. It will allow to gather best practices in Europe and give a practical roadmap to patients and research organisation to better manage these questions.
Featured image credit: Joseph Bourdaud
Go back to the Special Issue: ESOF 2018