Patient and Public Involvement (PPI)

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

Several of the themes and ‘enabling activities’ of the JPND Strategic Research Agenda refer to principles and activities of PPI for example; ‘Connection to Policy Makers’, ‘Communication and Outreach’ and ‘Stakeholder Engagement’.

JPND Management Board members have since determined that PPI should be an integrated part of SRA implementation, and a JPND Action Group was established in June 2012 as part of a number of actions to promote engagement, commitment and partnerships. The remit for the Action Group is “to promote Public Involvement in Research in order to improve the way that neurodegenerative disease research is Prioritized, Commissioned, Undertaken, Communicated and Used”.

The Action Group was expanded in 2014 to form a JPND PPI Stakeholder Advisory Board, with the addition of senior leaders of relevant parts of the international scientific, clinical, healthcare and social care systems.  The primary aim of the Board will be to provide rapid and frank feedback and early advice from the broad PPI stakeholder community to JPND in relation to implementation of PPI in ND research. The list of PPI Board members is available here.

Guide for JPND Call applicants

A user-friendly guide on how to involve patients, their family members and caregivers, and the organizations that represent them, in research studies supported by JPND. This guide is specifically targeted for applicants, reviewers, and successful awardees within JPND calls for proposals. JPND gratefully acknowledges the assistance of members of the DenDRoN Network, UK in the creation of this guide. The guide is available for download by clicking on the image above, or at the file link below:

Instructions for Full Proposals

A set of instructions to guide full proposal applicants in their drafting of the PPI section of their proposal. JPND gratefully acknowledges the assistance of members of Arthritis Research UK in the creation of these instructions. The instructions are available for download by clicking on the image to the right, or at the file link below:


JPND Guide for Patient and Public Involvement

PPI Instructions for full proposals