I recently wrote an introductory article concerning the participation of patients in research before a session on this topic at ESOF conference in Toulouse in July 2018.
With this new article I would like to share best practices that we collected during this workshop and a practical roadmap to patients and research organisations to better manage these questions.
How can patients start to work with researchers?
The easiest step to start is probably to organise an event together, during which researchers can communicate their results of research and patients can share their needs and their ideas. After this event, patient’s organisations (POs) can offer to proofread consent forms, as this will facilitate subsequent ethical review for the researchers. This will be an entry point for POs to work on the long term with researchers. Patient’s organisations can then ask to have access to research protocols, or to take part in the steering committee of the clinical trial.
How can patient participate in research priority setting?
The most interesting and difficult step in this approach is to include patients in research priority setting. Various methodologies have been developed to assure representativeness and equal contribution of every partner like the James Lind Alliance Priority Setting Partnerships
and more recently the Dialogue Model co-funded by Athena Institute, VU University Amsterdam.
In France, an online approach called Inspire, is currently tested,in which patients are invited to share their research ideas and curate the various suggestions made by the group. This step is also often realised by POs,who can circulate surveys to their members.
One way to participate in research priority setting, is to offer funding in order to select the projects that are the most interesting for POs. In France,a new crowdfunding platform called Thellie offer to manage the funds collected on a disease and fund directly the most interesting project.
Who can facilitate this dialogue and what incentive measures exist?
In some countries, like the UK, there are between 260 and 300 patients and public involvement leads who are working in different locations to support patient and public involvement work.
In France, at Inserm (French national institute for health and biomedical research), retired scientists are invited to lead this effort via Sciens’as.
The incentives are very variable depending on the countries. This approach is probably the most streamlined in UK.
In the UK, all applicants for NIHR funding must demonstrate how they have involved patients and the public in developing their research. They must submit a public involvement plan with their research application and have to report on progress during the course of their study.
Similar requirements are in place for the European Horizon 2020 Funding.
Concerning researcher’s evaluation, the Research Excellence Framework (REF)in the UK – the national system for evaluating the quality of research in higher education institutions – does not only evaluate the quality of research through publication records but also looks at the impact of the research on society.
Unfortunately these incentives measures are still not very numerous in various European countries.
Read a more detailed summary of our session, with other examples.
Featured image credit: Joseph Bourdaud