Patient and Public Involvement – PPI

The strategy of 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. (see JPND:Patient and Public Involvement – PPI – in JPND Calls , June 2020, attached)

AIM:
Patient and Public Involvement (PPI) in research can potentially help researchers make sure that the design of their research is relevant, that it is friendly and ethically sound to the participants. It can also help assure that researchers explain clearly what their study is about; communicate more sensitively with people; design studies so they are easier and more efficient for the individual to take part in; and communicate the results to people. In some cases patients may even be involved in doing the research, helping to collect data, or analysing the findings from a patient perspective.

PROCEDURES

The strategy consists of 4 steps:

STEP 1
To develop and disseminate ‘best practices in PPI ”- as described in JPND PPI Guidelines.

STEP 2
To support and assess the implementation of PPI in JPND Calls: The call secretariat in collaboration with the PPI secretariat ensure assessment and feedback on the planning of PPI of proposals for projects by ranking them qualitatively from A) to C).

STEP 3
The funded calls are asked after year 1 and after year 4, to evaluate and share their experiences from applying PPI through the conduct of the project. The PPI secretariat coordinates and publishes the outcomes of the evaluation for sharing and learning.

STEP 4
To identify new developments in PPI and integrate those into the JPND policy for PPI – based on the outcomes of step 1- 3 and advice from a JPND PPI Network .

YEAR 1 AND YEAR 4 FOLLOW UP OF PPI OF JPND FUNDED CALLS –

Preliminary experiences 2020

Fundamentally the application of PPI is a learning process for the researchers, for the patients and for their carers.

The 2019 and 2015 calls were the first to be asked for a Year 1 and a Year 4 follow-ups on the implementation of PPI.

The reason for this is that, how PPi is implemented, is decided by the members of the consortia, for each of the funded projects.

Shared – Learning is supported through the outcomes of the follow up reports and will be made available via the JPND homepage.

EXAMPLES OF PPI FROM YEARS 1 and 4 FOLLOW UPS OF THE 2015 and 2019 CALLS WILL BE PRESENTED AT THE JPND MB MEETING IN NOVEMBER 2020.