Lived experience voices

A framework for including patients and the public in funding applications and research

Development Design and Planning 

Patient and public involvement (RAG) throughout planning phase of research study, development of the research question, scoping review design, recruitment, PPIE element in study, and dissemination to public. An agreed (with PPI group) fully funded PPI plan is co-written with public involvement as part of the study planning. 

Additional Funding Applications for Existing Studies

In applications for additional funding for existing studies with tight timescales oversight of applications and feedback (from RAG). Inclusion of PPI input in the use of the additional funding should be included wherever possible. If not, this should be clarified in discussion after the funding is secured and a PPI plan co-developed. 

Patient and Public Involvement Co-Applicant

Where possible a PPI Co-app is part of research team and has relevant lived experience of condition being studied/researched. In data/statistical studies this can be experience of advising on analysis and findings and which data sets have relevance to patient/public.

Formation of a PPI Group

Formation of a PPI group with inclusivity diversity and accessibility considerations and criteria, ideally matching those of the study participants. (see above point if no participants). Members of the group are led by experienced PPI Lead within the agreed plan, all parties knowing what their contributions will be and what work required, timescales, impact and reimbursement and recognition processes in place before commencement of study. There should be scope to review processes throughout the study. All patient facing literature should be developed with PPI group. Members of the PPI group to be part of Steering Committee or equivalent level of management input. 

Evaluation of PPI Work/Impact/Recognition 

Evaluation PPI is evaluated with the PPI group and Co-app throughout the study and should be a dynamic process. Co-design should be used to develop interventions wherever practical and possible. Impact should be recorded and shared with PPI group in feedback/recognition. 

Data Collection/Analysis

PPI group should give advice on data collection (interviews, surveys etc.. and analysis of data collected. Some input on thematic analysis is a rich source of opinion and experiences.

Training for PPI Group

Where the PPI group require training to develop, enhance and assist their contributions this should be provided where possible either by the research/wider team or signposted to existing resources. On going dialogue with research team will ensure PPI group are comfortable and confident to take part. There can be cost implications, and these should be in the PPI Plan (where funding allows) but time can be all that is required.


PPI group should have input into presenting findings and jointly agree on key aspects in relation to the study. They should be fully involved and invited to attend, speak, present at any public dissemination events. Should (funding allow) alternative dissemination – infographics videos etc should be jointly developed to ensure inclusivity, diversity and accessibility to public.


After the study ends those who are interested should be invited to contribute to papers and articles about the study and given credit for this (named on papers etc).

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