Public patient involvement (PPI) is where research is being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants. Since March 2017 I have been building a small portfolio of projects (mostly voluntary) on this area (July 2018).

Member Parkinson’s UK steering group: BenevolentAI project.

The project will use BenevolentAI platform’s capabilities to reason, deduce and suggest entirely new treatments for Parkinson’s. See link.

The aim is to identify at least three currently available medicines that can be repurposed to address Parkinson’s, and two brand-new ways to treat the condition with new drugs. 

Public Contributor , NIHR RDS East of England Pre-Submission Panel.

The National Institute for Health Research (NIHR) requires evidence of patient and public involvement (PPI) in the preparation of research funding applications in order to obtain a successful outcome. Patient and public involvement is described as an active partnership involving members of the public in NHS, public health, applied health and social care research, not simply as research participants or ‘subjects’. The NIHR Research Design Service (RDS) for East of England are the organisers of the Pre-submission Panel. This Panel is held three times a year in line with funding application deadlines. The panel is suitable for researchers or applicants who have their proposals ready and who wish to receive a final opinion before submission. Much like a formal NIHR Funding Committee, a panel of RDS East of England advisers re-create the committee environment to consider each application. See link.

Volunteer. Parkinson’s UK Research Support network.

At Parkinson’s UK I have three different roles. I am a member of the Research Support Network’s East of England Research Interest Group Steering Group comprised of a mixture of patients and carers and PUK staff. I am also helping to develop a communications strategy based around a web service supporting the needs of local research champions. See link. As a lay reviewer for PUK I assess both the language used and predicted patient outcomes associated with research funding applications.

Member User Reference Group, NIHR Research Design Service for East of England.

Supporting co-editing for the journal Frontiers in Sociology, section Medical Sociology. The title of the  article collection will be “Public Participation in Health Care: Exploring the Co-Production of Knowledge”. See link

Member BMJ-Pfizer Developing Clinical Research Skills review panel

The purpose of this Pfizer-sponsored programme is to improve the quality of the conduct and reporting of clinical research in the UK and in low and middle-income countries. Organisations will be applying to the programme to get access to the BMJ’s Research to Publication educational training module. See link. The external review panel is being appointed to select which organisations get access to this training. The training is a series of online self-study courses designed to enable doctors and healthcare researchers to develop clinical research skills and succeed in publishing high quality papers