The absence of formal documentation has been a barrier in effective patient involvement in our development processes. Are guidelines available that could help us structure and document patient involvement activities?
Hi Rosa, you could try some of the following strategies and guidelines that have been developed to provide structure and systematic documentation for patient involvement.
The European Patients’ Academy on Therapeutic Innovation (EUPATI) developed a Patient Engagement Roadmap & Toolbox, with practical guidance for involving patients at different stages of the therapy development.
The Patient Engagement Resource Centre (PERC) offers guidance, training, and practical tools in planning, conducting, and evaluating patient involvement. These help to formalize the process and ensure that documentation is comprehensive. See Patient Engagement Resource Centre.
The Involvement Matrix is another helpful tool for structuring patient engagement. It facilitates dialogue between patients and academic researchers to establish clear agreements on the roles, expectations, and nature of involvement.
Some patient networks also provide frameworks or guidelines that can be used for efficient patient involvement, might be worth involving them.
Hi Rosa, I am involved in the PSIDER ZonMW committee. In one of the applications for networkgrants, a group in Canada has been described that had developed a framework for preclinical phase and patient involvment.
@mdriesssens Based on your reply I found this framework developed by a Canadian research group. Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research | Research Involvement and Engagement | Full Text but I can’t find the ZonMw project working on this. Has the networkfunding been granted already?
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@Benien It is one of the projects in ZonMW PSIDER.