Patient and Public Involvement in Research – JPND Advisory Board
A JPND Action Group on Patient and Public Involvement (PPI) was established by JPND Management Board members in June 2012 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 from relevant parts of the international scientific, clinical, healthcare and social care systems. The primary aim of the Board is to provide rapid and frank feedback and early advice from the broad PPI stakeholder community to JPND in relation to the implementation of PPI in neurodegenerative disease research.
PPI Advisory Board Members
The Advisory Board Members are:
- Marco Blom, Alzheimer Netherlands
- Lilly Cappeletti, Michael J Fox Foundation for Parkinson’s Research, USA
- Simon Denegri, National Institute for Health Research, United Kingdom
- Mogens Horder, University of Southern Denmark, Denmark* – Chairperson
- Derick Mitchell, IPPOSI, Ireland
- Florence Pasquier, Lille University Hospital, France
- Jennie Popay, Lancaster University, United Kingdom
- Martin Rossor, DenDRoN, United Kingdom**
- Päivi Topo, The Age Institute, Finland
- Rosário Zincke dos Reis, Alzheimer Portugal
The Advisory Board works primarily by digital communication (email + teleconferences), with a structured 1.5 hour teleconference approximately every 10-12 weeks.The teleconferences are thematic in nature with 1-2 topics being discussed at each meeting. The Board Terms of Reference are available by clicking on the link below.