3 October 2022

SNSF supports the active involvement of patients in the research process

Applications for the Investigator-initiated Trials (IICT) funding program must include a plan for the active involvement of patients throughout the study. Project applications such as that for the EMINENT-ICH study are now supported with a "Preparatory Grant". With this grant, the concrete implementation of "Patient and Public Involvement" activities can be implemented in the preparation of the application.

The term "Patient and Public Involvement (PPI)" is used to describe efforts that enable the active and cooperative participation of those affected. This refers to patients or their relatives and caregivers as well as interested parties from the general public. They share their experiences with a particular disease, their views, preferences and expectations of research and thus help to increase the usefulness and relevance of future research projects.

PPI becomes concrete and tangible

Since 2020, it has been mandatory to submit a PPI plan when applying for funding under the SNSF IICT program. This plan must convincingly present how, to what extent and with what goal patients or suitable representatives were and will be involved in the planned project. For example, they can help prioritise which of the study endpoints are relevant to them or whether the effort involved in participating in the study is reasonable from the participants' point of view. Contributing to the patient information or lay summary is also a good way to take into account their experiences, perspectives, and needs.

New perspectives for researchers

For many researchers, this patient-centered approach to study design is still new. Appropriate ways and methods for the active involvement of those affected have to be found. There is no general concept for PPI that fits every study equally well, but overall there are many possibilities. In addition, there are more and more examples from larger and smaller clinical trials which provide practical experience to the clinical research community. Exchanges among study teams as well as with the DKF, which advises an increasing number of researchers on PPI, can help determine what is possible and feasible for one's own research project.

Any study that relies on this new kind of collaboration between the public and researchers helps ensure that public money is spent wisely and that research meets real needs.