Patients, their Families and Carers, and Interested Citizens Involvement in Palliative Care Research

Introduction

This Public and Patient Involvement (PPI) Impact Evaluation Framework was developed to support researchers to measure PPI impact in palliative and health care research using quantitative and qualitative methods.

AIIHPC co-produced the framework with PPI contributors from AIIHPC’s Voices4Care and researchers from AIIHPC’s Palliative Care Research Network and Early Career Research Forum, in collaboration with the PPI Ignite Network at University College Cork.  This included an initial literature review to identify current practices in conducting PPI in research and evaluating impact. Followed by focus groups with PPI contributors and researchers to identify key themes for evaluating PPI impact. The results of the review and focus groups were used to inform the development of a draft framework. This draft framework was then reviewed by AIIHPC and an external expert, piloted with researchers, and updated to produce this PPI Impact Evaluation Framework to support palliative and health care researchers.  

Framework Benefits

This framework offers clear guidance on documenting and evaluating PPI for palliative and health care research across the research cycle, from initial design through to delivery and dissemination. This framework supports researchers to:

• Collaborate effectively with patients, families, caregivers, and interested citizens
• Develop research that aligns with the lived experiences and priorities of those receiving palliative care, and their families and caregivers
• Systematically document the impact of PPI in research to support for example in:
  • Grant funding proposals
  • Project evaluations and final grant funder reports
  • Publicity materials such as press releases
  • Research dissemination and implementation strategies
  • Impact assessments on policy and practice
  • Research Assessment Exercises (RAEs) submissions to demonstrate the value and reach of research activities

Framework Principles

This framework is based on the following principles:

1. Respect, Trust, and Transparency between both collaborators and study organisers which facilitates an environment of open evaluation and development.  
2. Equality, Collaboration, and Inclusion which ensures that study collaborators are dually involved in the PPI process with all contributions being valued and reflected in the collaborative outcomes.
3. Research Excellence, Curiosity, and Empowerment to promote the output of research that is impactful and relevant in palliative care and wider health care.

How to use this framework

This framework will support researchers to measure:

1. Overall Public and Patient Involvement
2. Co-Produced Outputs across Research Cycle
3. Partnerships and Collaborations Established
4. Public Awareness and Media Engagement
5. Overall PPI Research Impact

The framework includes the following forms:

• PPI Impact Evaluation Form: to be completed by the researcher(s) in collaboration with PPI contributor(s)
• PPI Contributor Feedback Form: to share with PPI Contributor(s) so they can document their experience
• PPI Reporting Checklist: to help researchers determine best practice for including PPI in research design, delivery and dissemination including reporting research outputs

This framework is designed for researchers to use across all stages of the research cycle in collaboration with PPI contributors. It is recommended that even at the early stages this framework can researchers to consider and plan for impactful research outcomes with PPI contributors. 

Note: Not all form or sections may be relevant however it is recommended that the PPI Impact Evaluation Form and Section 1 is completed as a minimum.

Download the PPI Impact Evaluation Framework document here.

If you are a member of AIIHPC PCRN or ECRF and would like more information or to have your completed Framework published on Research Studies please contact Jane Clare, AIIHPC PCRN Project Manager at jclare@aiihpc.org