Abstract
Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's.
Approach to Patient and Public Involvement (PPI): This paper reports on how PCs
shaped the design and development of the PRIME‐UK research programme study
materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research
programme. The PRIME‐UK research programme is designed to improve the
quality of life of people with Parkinson's and this project included three studies: a
cross‐sectional study, a randomised control trial and a qualitative study. We
captured these impacts using Public Involvement Impact Logs, which provide a
framework allowing researchers and PCs to report on the learnings, immediate
outcomes and impacts from PPI. For this project, the impact logs enabled us
to provide reflections from PCs and researchers on the process of involving
‘the public’ in Parkinson's research.
Findings: This paper builds on existing evidence of the range of benefits and
challenges that emerge from working with patients and the public in Parkinson's
research; this includes reflecting on the changes made to the study materials and
benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process.
Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement.
Public Contribution: Public contributors (PCs) were involved in the design and
development of the participant information leaflets, consent forms and other
patient‐facing documents used for studies within the PRIME‐UK research
programme. In addition, PCs evaluated their involvement using impact logs and
co‐authored this paper.
Approach to Patient and Public Involvement (PPI): This paper reports on how PCs
shaped the design and development of the PRIME‐UK research programme study
materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research
programme. The PRIME‐UK research programme is designed to improve the
quality of life of people with Parkinson's and this project included three studies: a
cross‐sectional study, a randomised control trial and a qualitative study. We
captured these impacts using Public Involvement Impact Logs, which provide a
framework allowing researchers and PCs to report on the learnings, immediate
outcomes and impacts from PPI. For this project, the impact logs enabled us
to provide reflections from PCs and researchers on the process of involving
‘the public’ in Parkinson's research.
Findings: This paper builds on existing evidence of the range of benefits and
challenges that emerge from working with patients and the public in Parkinson's
research; this includes reflecting on the changes made to the study materials and
benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process.
Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement.
Public Contribution: Public contributors (PCs) were involved in the design and
development of the participant information leaflets, consent forms and other
patient‐facing documents used for studies within the PRIME‐UK research
programme. In addition, PCs evaluated their involvement using impact logs and
co‐authored this paper.
| Original language | English |
|---|---|
| Article number | e13914 |
| Journal | Health Expectations |
| Volume | 27 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - 2 Nov 2023 |
Bibliographical note
Funding Information:The authors acknowledge the input of Julia Voke, who was involved in the PRIME‐UK research programme as a public contributor. They would also like to acknowledge the input of Dr. Heather Brant who works on the PRIME‐UK research programme. Carmel McGrath and Andy Gibson acknowledge support from the NIHR Health Protection Research Unit in Behavioural Science and Evaluation at the University of Bristol. Carmel McGrath and Andy Gibson's time is supported by the National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West). This work was supported by the Gatsby Charitable Foundation, Grant Number 3676.
Publisher Copyright:
© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.
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