Patient and Public Involvement – PPI

Most health and healthcare research would be impossible without the active involvement of patients. The last 20 years have seen a growing interest at a European, national and local levels in patient engagement and in particular a focused interest in patient and public involvement (PPI) in research.

The strategy for the implementation of PPI through calls for research projects

Since 2015, JPND has developed a strategy for the implementation of PPI as a learning process, in parallel with and as part of the JPND calls. The strategy is essentially a learning process from shared experiences. Organisations that represent patients and the public such as Alzheimer Europe are important partners in the PPI process in JPND.

Patient and Public Involvement (PPI) in research can help researchers ensure that the design of their research is relevant, friendly and ethically sound to participants. It can also help researchers explain their studies clearly and communicate more sensitively with people. In some cases, patients and their relatives may even be involved in conducting the research, e.g. collecting data or analysing findings from a patient’s perspective. Involving patients with impaired cognitive functions -as in the case of some neurodegenerative diseases – may represent a particular challenge for both the patient and the researcher . However, these experiences serve to document the value of considering PPI in research in these type of diseases.

The strategy for the implementation of PPI through JPND calls consists of 4 steps:

Applicants for JPND Calls should apply PPI as part of the proposal as described in the document in the JPND PPI Guidelines.

To support and assess the implementation of PPI in JPND Calls: The call secretariat, in collaboration with the PPI secretariat, ensures assessment and feedback on the planning of PPI of proposals for projects by ranking them in order of the quality of PPI planning.

The funded calls are asked after year 1 and year 4, to evaluate and share their experiences from applying PPI through the conduct of the project. The PPI secretariat coordinates and publishes the key outcomes of the evaluation for sharing and learning purposes.

To identify new developments in PPI and integrate them into the JPND strategy.

Support for the implementation of the strategy

The PPI secretariat (in collaboration with the Call secretariat) is responsible for all PPI-related matters:

 Contact the PPI Secretariat: Alexandra Rodrigues ([email protected]) and Mogens Hørder ([email protected]) for more information.

Year 1 and Year 4 follow-up of PPI of JPND funded calls –

The outcomes and experiences illustrate how the members of the consortia that are working together want to apply PPI as part of the planning and the conduct of the funded call.

Reports of PPI follow-ups from year 1 and year 4 of the 2015,2016 and 2019, 2020 Calls are in progress. Completed reports will be uploaded here.