Working with public contributors in Parkinson's research: What were the changes, benefits and learnings? A critical reflection from the researcher and public contributor perspective

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.


| INTRODUCTION
Patient and public involvement (PPI) is increasingly prominent within health research in the United Kingdom and internationally. 1,2There is growing interest from research funders in developing methods to evaluate the impacts that result from working in partnership with patients and the public in research. 1,3,4][10] Some believe that PPI should be embedded in research because patients and the public have a right to be involved in research, regardless of the impact. 11,12hers consider it important to provide evidence of the tangible and practical impacts that PPI has made on research. 10Staley points out that the benefits of doing PPI in research are well established even though difficult to quantify, and questions whether further attempts at measuring impact are necessary or desirable. 8She suggests that whether public involvement is worth doing or not depends on a range of contextual factors, so the answer to this type of question will always be 'maybe'.Furthermore, many public contributors (PCs) feel uncomfortable with the notion that their contribution to research is being singled out for evaluation.
The present authors do not see a necessary conflict between a rights-based approach to PPI and one that emphasises the potential benefits of public involvement for the quality and relevance of research.We would agree with Staley that, in general, the benefits of PPI for research are well established but believe we need to move beyond her 'maybe' response.PPI is an evolving discipline and there is much to be learned about the best way to practice it in relation to diverse groups of people and with a wide range of research methodologies.We suggest that evaluations are carried out looking at the input of PCs within specific research methods and topic areas with an emphasis on improving practice so that the full potential benefits of PPI are maximised for both PCs and researchers.
While the National Institute for Health and Care Research (NIHR) encourages researchers to involve PCs collaboratively and at every stage of the research process, the researchers writing this paper were relatively new to the practice of PPI.This paper includes honest reflections and learnings from the researcher and PC perspective on conducting involvement in Parkinson's research, acknowledging where future practices could be improved to achieve more meaningful and embedded PPI.
5][16][17] This defines impact as, 'The changes, benefits and learning gained from the insights and experiences of patients, carers and the public when working in partnership with researchers and others involved in NIHR initiatives'. 14The definition acknowledges that, while tangible changes to research are recognised as impact, equally important are the benefits and learnings for researchers and PCs.
There are several tools available to evaluate PPI in research.Some are designed specifically with PPI in mind, for example, Public Involvement Impact Logs, the Cube Evaluation Framework and the more comprehensive Public Involvement Impact Assessment Framework. 18,19Others have adopted methodologies drawn from the wider evaluation literature, for example, realist evaluations. 20,21e of the difficulties with evaluating PPI is the additional work that it generates for both researchers and PCs.A Public Involvement Impact Log, 19 developed by colleagues and PCs from the People in the Health West of England, UK (a regional PPI network based in the South West of England), was used in the current study.The Public Involvement Impact log provides a simple framework that enables both PCs and researchers to report and reflect on learnings, immediate outcomes and longer-term impacts following any given PPI activity. 19The log is both a record of PPI activity and a reflective tool that can be used longitudinally throughout the research cycle as a space for both PCs and researchers to consider their own role and learning in PPI.
The existing literature has revealed that there is a small body of evidence reporting PPI practices and impacts on Parkinson's research. 15,22,235][26][27][28] We hope that the insights reported in this paper will further enhance PPI practice in Parkinson's research.
In this paper, we use the NIHR definition of PPI impact to reflect on the changes, benefits and learnings gained from working with PCs on a research programme on Parkinson's. 13,14We conclude by offering key recommendations for how to involve patients and the public in Parkinson's research and suggest approaches that could be used in practice to capture the impacts of PPI.The concluding section of this paper reflects on the use of impact logs as a framework to capture PPI impact.

| PC involvement in the PRIME-UK cross-sectional study
PCs were asked to comment on the term used to describe someone who provided informal care for a person with Parkinson's (PwP).They were also asked to review and comment on the participant information leaflets (PILs), consent form and a document entitled 'About me', which asks for some basic information about who, if anyone, the PwP lives with, whether they have an informal caregiver and any requirements they may have, so that these could be accommodated in the research process.

| PC involvement in the PRIME-UK RCT and the PRIME-UK qualitative study
PCs were asked to comment on the PIL, consent form and treatment plan template for PwP for the PRIME-UK RCT and the topic guides for PwP and caregivers for the PRIME-UK qualitative study, respectively.Regarding the PILs and consent forms, they were asked to comment on the clarity of the research purpose, explanation of the study procedures and language used, and any steps the researchers could take to make it easier for PwP to take part.They were asked to provide feedback on the questions outlined in the topic guides and discuss if there was anything potentially inappropriate or missing.The researchers responded to PCs to thank them for their time and contribution and with a description of how their comments were integrated into the documents, as appropriate.If comments received were unable to be integrated, this was explained by the researchers to the PCs.
After the PCs' involvement in these activities, one of the researchers (F.E. L.) emailed each PC individually with an introduction to the evaluation of PPI and with questions related to their experience of providing their views on the three studies.PCs were subsequently contacted by one of the researchers (E.T.) to provide their reflections for this paper.Researchers (F.E. L. and E. T.) were also asked to provide their reflections on PPI in the research process.

| Evaluation of the PPI using the Public Involvement Impact Log
The questions in the original Public Involvement Impact Log (Figure 1) were based on the findings of a systematic review that was undertaken by Health Protection Research Unit colleagues (including co-author N. H.-K.).The review examined frameworks of impact and evaluation in PPI.Its findings highlighted the areas that were consistently reported across papers.These formed the basis of the original questions (Figure 1), which were further refined and developed with input from a separate group of PCs.The log was intended to be used as a template, which researchers and PCs together edited where necessary to ensure it was fit for the purpose.
The PRIME-UK researchers identified that the Public Involvement Impact Log in Figure 1 was a useful resource for aiding the reflective process from both the PC and researcher perspective and it was adapted by F. E. L. and E. T. to make it more suited to the PRIME-UK research programme whereby specific rather than broad questions were used (Tables 1-3).It was adapted in this way because communication was via email rather than face-to-face due to the Covid-19 pandemic restrictions.The questions asked of the PCs explored their thoughts on the changes made to documents in response to their comments.The researchers were asked about the outcomes and impact of PC involvement in the research and reflections on their own role in PPI.By adopting the Public Involvement Impact Log, it was possible to elicit reflections and PPI impacts based on the researchers' and PCs' experiences of working together on this research programme.

| General reflections on the role of the public in developing this paper
All PCs and researchers involved were subsequently invited to provide their reflections on the role of the public in research in general (Figure 2).Two of the three PCs were interested in continuing their involvement and co-authoring a paper that reported these important reflections. 32The reflective process and development of themes involved regular online meetings.
Eleven meetings in total were held and the PCs were paid for their attendance at these meetings at the NIHR payment rate of £25/h. 33e first meetings were initially focused on open discussions and reflections.Through an iterative process, we explored the key themes and highlighted important learning points for our future practices as well as learnings that could potentially benefit practices in the broader context of PPI in health research.One of the PCs involved also developed a diagram to illustrate the overlapping and distinct themes that emerged from researchers and PCs (Figure 2).
During our meetings, we reminded each other of the importance of acknowledging the challenges experienced and suggesting areas for improvement.We also discussed the paper writing process and how the PCs would like to be involved as coauthors.
F I G U R E 1 Public involvement impact Log, taken directly from Kok. 19 T A B L E 1 Questions asked of three public contributors in relation to the PRIME-UK cross-sectional study and their responses.

Questions asked
Public The three PCs were asked to evaluate the impact of their contribution to the research (Tables 1 and 2).PCs reported that they were pleased to receive specific and detailed feedback from the researchers stating that their input was valuable.In addition, they reported that the feedback was not received in a timely manner.They stated that they perceived the repeated contact from the researchers to mean that their comments had value and were possibly impactful.They described their happiness that research is underway to improve the lives of PwP and their interest in continuing to provide feedback to researchers.Reflections from PCs on the involvement of the public in the research process, in general, are available in File S1.

| Comments from researchers involved in the PRIME-UK programme of research
Table 3 outlines the impact log responses from the three researchers.
The researchers each expressed how valuable they had found the input from the PCs.They listed several benefits of PC input including ensuring that patient-facing documents contained clear information in plain language, that terminology was appropriate for the target audience, and that the study procedures considered the needs of PwP.Involvement of the PCs was deemed to have led to tangible changes to the study documentation and, while it was acknowledged to be difficult to quantify the effect on study recruitment, these changes were thought to have improved the quality of the research and were anticipated to positively impact on research participant recruitment.Researcher 1 reflected on previous studies in which it would have been valuable to engage with PCs.The researchers suggested that it may have been useful to involve a wider range of PCs in this research programme and to do this earlier in the process.
There was a common theme around the limitations of the use of | 7 of 14 email as the sole communication method.The importance of reporting back to PCs about the changes made because of their input was highlighted, and it was acknowledged that there was a delay in doing this.Reflections from two researchers on the involvement of the public in the research process in general are available in File S1.

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Reflections from PCs and researchers on the impact of PPI in the research process; more commonalities than differences However, researchers who had limited experience in PPI reported that they lacked confidence in knowing how to involve PCs and how to use the feedback they provided.
The first theme common to both groups described the importance of providing a supportive environment for the specific patient group in question.The current project focused on understanding the challenges that PwP faces including lack of motivation, poor energy levels and slowness of thought; it was acknowledged that the timing of the day of engagement is vital.It was also suggested that caregivers could be present, not only to provide support to the PwP but to ensure that their perspective is heard.The second theme revolves around the recognition of the benefit of the evaluation of the impact of PPI on the process.Both groups acknowledged the potential negative impact of not including PPI.In addition, PCs appreciated that not all their suggestions could be implemented though communication needs to be clear to ensure that their contribution is apparent.Third, both PCs and researchers agreed that PPI engagement can make a positive difference in the research process.Fourth, and importantly, timely, personalised communication and the use of face-to-face communication where available, is key.
To conclude, while PCs and researchers outlined their thoughts in their reflections, it is interesting to note that despite the individuals involved having different experiences, backgrounds and expertise, four of the themes were common to both groups.

| DISCUSSION
At the beginning of this paper, we reviewed the current discussion relating to the evaluation of PPI; specifically, we identified a need to develop user-friendly approaches to evaluation that provide real-time feedback to improve practice.We have shown how the use of a simple impact log can facilitate this process.The impact log facilitated reflection and required minimal effort and resources.Furthermore, Abbreviations: GDNF, glial cell-derived neurotrophic factor; RCT, randomised control trial.
T A B L E 3 Questions asked of three researchers involved in the PRIME-UK research programme and their responses.I made several changes to the participant information booklet following the input from PCs.This included PCs providing an approximate idea of how long the questionnaires would take to complete; using clearer terminology; clarifying the options for questionnaire completion; addition of further information about data protection.We also sought their input on how they would refer to someone who supports or helps them with their Parkinson's on an unpaid basis and, while this appears to vary according to personal preference, we were able to choose a term which most individuals are likely to find acceptable.Overall, I hope that these changes have helped to ensure the study documents communicate the important points about the study as clearly as possible.Another outcome was that we established that there was a preference for face-to-face recruitment.While this was not feasible in this study, it added weight to our plan within the protocol to proactively contact non-responders by telephone to answer their questions and offer support to take part; this helped us to justify the need for telephone follow-up to the ethics committee.
In my experience, the involvement of PPI in any study is crucial as it is important to involve representatives of the sample population to ensure that we have considered/included all the issues that are important to them.It is equally important to consult them on whether they feel that the expectations that the study team have about research participants are realistic and feasible.This will then help to identify any possible barriers to study participation to ensure that the study team have the best chance of collecting the data they intend from participants while ensuring that the wellbeing of the participants is respected.By inviting feedback from PCs, the ultimate goal is to improve the quality of the research and to make it relatable to those it intends to serve.
What was the impact of the public involvement in PRIME-UK, either positive or negative?
1.The impact for me was a sense of satisfaction that we asked those whom our research is designed to help for their input.It also reminded me of all the research that I have previously carried out where we didn't engage with PCs and how valuable this would have been.I have learned a lot in this process.2. It is possible that the PCs feel empowered by their involvement and perhaps confident that they are doing something to help others.
It is difficult to say whether the PPI positively influenced recruitment to the study, as there is no comparison.However, it was certainly very helpful to have the honest opinions of the PCs, who themselves have Parkinson's, about the things which may make a person with Parkinson's more or less likely to take part in the study.This enabled me to rephrase some sections, add additional text and clarify the process of taking part, which I think have all improved the final participant information booklet.While one PC queried what new information this study would add, the other feedback about the study was generally positive which was encouraging.
The PCs were very frank in their feedback while being supportive of the study.On the whole, most of the suggested changes were really helpful.The PCs brought their experiences of being either someone with Parkinson's or someone who lived/cared for someone with Parkinson's.This enabled them to offer an exclusive view of what they thought was needed or where the questions could be refined in the topic guides.Interestingly, many of the suggestions/comments were shared across the differing PCs.As a result of the feedback, most of the suggestions were included.I also received some academic advice on how to revise the study design and how best to design topic guides and, while I am sure this was meant to be helpful, this was not in the brief that was sent to the PCs.

(Continues)
T A B L E 3 (Continued) One PC asked to speak on the phone to resolve some queries about the process and this showed that there may have been some added benefit to meeting in person or on video to allow for some discussion; this may also have been helpful where the PCs had differing views on particular aspects.I am really glad that we sent the 3 PCs some feedback to explain how we had implemented their comments (even though I was a little delayed in doing this) as this made it more of a two-way process and they appeared to appreciate knowing their contribution had made a difference.I was impressed at how engaged the PCs were in the task and the speed at which they provided feedback.
Abbreviations: PC, public contributor; PPI, patient and public involvement.
we reflected on the use of impact logs throughout the research process and are of the view that they fostered transparent and continuous communication between researchers and PCs (File S1).To the best of our knowledge, this is the first published example of how a simple tool has been used to evidence the impact of PPI in Parkinson's research.In addition, the current guidance on public involvement in Parkinson's research does not currently signpost resources that can be used to evaluate impact or suggest that evaluation should be considered from the outset.We therefore suggest that this information may be a valuable and useful added to existing Parkinson's related PPI guidance. 23,34r contributions to the evidence base of public involvement impact highlight the significance of not only reporting the impact on the research but also the valuable insights and lessons learned through our reflections.These reflections, we argue, are just as important in shaping our understanding and approach to public involvement, further supporting the definition of PPI Impact as detailed in the UK Standards for Public Involvement standard 'Impact'.The impact of PPI in Parkinson's research is not widely understood and there are gaps in our knowledge of how researchers translate and apply the learnings from working with patients and the public to their practices. 12The involvement of PCs in the PRIME-UK research programme provides a valuable example of the impact and benefits of involving patients and the public in health research.
Through a combination of impact logs and reflections, our paper has highlighted the positive changes that resulted from working with PCs, including the ways in which they shaped the design of study materials, influenced the terminology used and improved researchrelated outcomes.This evidence strengthens the existing recommendations and reports that support the positive impact of PPI in Parkinson's research. 15,34,35rthermore, our paper has also demonstrated the many benefits of PPI.For instance, PCs expressed that they enjoyed the opportunities for social interaction and receiving support from their peers, which, in turn, enhanced their self-confidence in offering ceptions of the issues they were studying as a result of PPI. 12,3637 Our work has further emphasised the importance of feedback and effective communication strategies in the context of PPI in research.To develop a better understanding of the impact and encourage continued participation, it is crucial to establish ways to provide feedback that are both meaningful and impactful to PCs.
According to Mathie et al., exploring the role of feedback in PPI, a lack of feedback from researchers was found to result in decreased motivation and engagement from PCs. 38 Conversely, providing feedback acted as a catalyst for reciprocation and promoted reflection and learning among PCs. 38To address these potential issues, in our future PPI practices, we aim to incorporate mechanisms for providing feedback from the earliest stage of our research processes.By doing so, we aim to avoid the negative consequences associated with a lack of feedback and foster positive relationships between researchers and PCs.
F I G U R E 2 Themes from and public contributor reflections (File S1) on the role of the public in the research process.PPI, patient and public involvement.
The reflections suggest that researchers would benefit from undertaking training in PPI at the earliest opportunity, especially for those who have no prior experience in PPI.To guarantee productive and meaningful public involvement, it is important that researchers are equipped with the necessary skills and tools to collaborate effectively with PCs.Our work revealed that some researchers lacked confidence due to their limited experience, causing uncertainty about how best to utilise the feedback provided by PCs.In turn, this could influence the impact that public involvement has on a study.
The identification of potential barriers to involvement reported by the PCs involved in the PRIME-UK research programme further highlights the importance of developing plans for preferred ways of working with PCs from the outset.As a result, this approach will facilitate meaningful ways of working, overcome potential barriers to involvement and create positive experiences for all involved.

| CONCLUSION
The use of tools like impact logs can facilitate reflective practice and practical improvements in the delivery of PPI.The log is easy to use for researchers and PCs.The information it collects can be used to identify valuable insights into the impact, benefits and learnings of public involvement.By reflecting on the experiences of researchers and PCs, we can recognise areas for improvement and make recommendations for future practice (see Table 4).

2 |
APPROACHES TO PPI 2.1 | Recruitment PCs were recruited through Parkinson's UK and by word of mouth.While face-to-face sessions were planned, all communication took place by email, phone and video conference due to the advent of pandemic restrictions.There was no prior relationship between PCs and researchers before the PPI activities began as part of this programme of research.The researchers were colleagues working on the PRIME-UK research programme and had known each other for approximately 6 months at the point the PPI activities first began.Ethical approval was not sought as it is not required for PPI activities. 292.2 | Design: Background of the PRIME-UK research programme in Parkinson's and the PPI activities related to this The researchers and PCs who took part in this paper were all involved in the PRIME-UK research programme, which is designed to improve the quality of life of people with Parkinson's.PCs contributed their views on aspects of three individual studies within the PRIME-UK research programme: (1) the PRIME-UK crosssectional study, which aimed to describe the needs and experience of people with Parkinson's along with their informal caregivers 30 ; (2) the PRIME-UK randomised control trial (RCT), which is evaluating a multicomponent intervention 31 and (3) the PRIME-UK qualitative study, which is embedded within the RCT.

Figure 2
Figure2outlines the themes that emerged from the reflections (File S1) on the impact of PPI on the research process from both PCs and the researchers.Two themes arose from PCs, two from the researchers and four were common to both groups.The PCs reported that they enjoyed the opportunities for socialisation with other PCs during the study, which led to improved confidence.They also appreciated feeling valued and knowing that their perspective is important; however, one PC also highlighted concerns that their views may not represent the views of all PwPs.Researchers reported that several factors influenced both their experience of PPI and the inclusion of PPI in the research process.These factors included their professional background, career stage and the type of research they had previously undertaken.Second, if the researcher had a previous positive experience of undertaking PPI activities, they were more likely to include PPI in their ongoing and future research.
suggestions and input to the research.That stated, the PCs were cautious and aware that their views did not represent the perspectives of all people with Parkinson's.Researchers found that working with lived experience greatly enhanced their understanding of the issues faced by people with Parkinson's.By gaining valuable insights from these individuals, they were able to ensure that their work reflected the needs and perspectives of the ultimate end users of research-the patient/public.Furthermore, the positive feedback that the researchers received from PCs improved their confidence in the relevance and quality of their research.The insights and recommendations provided by the PCs have also had an impact on the researcher's perception of the positive value of public involvement in health research.These impacts were like the findings by Staley and Barron where researchers experienced 'lightbulb moments' and would change their values and per- It is impossible to judge if there is any change as a result of my input, was my immediate response.I do not have the latest versions of all the documents I commented on or those in their original form for me to compare and contrast the changes made.In addition, even allowing for Covid delaying any process it has been 12 months since you sought my input and shared some of the updated documents.It sounds a little bit harsh but I can hardly characterise this as immediate.I believe my feedback was honest, challenging and would make a difference if used.Given the number of times it is described by yourself as valuable and a previous email commenting on the value of my feedback, I'm inclined to believe that it was used and did make a difference.This is further reinforced by the fact that you have asked for my feedback again.And would like to do so and other topics.I can't believe you would be asking me if you didn't believe my feedback would make a difference hence I believe it has resulted in changes being made.Ideally, they would be more immediate and it wouldn't take 12 months to request feedback.It would have been great and much easier toanswer the question if you had shared documents in their form before and after I (and other PwP) had provided feedback.So that any changes would have been easier to see.Answered this question as part of question 1.Answered this question as part of question 1.Three PCs were successfully recruited to work on the studies.
Questions asked of three public contributors in relation to the PRIME-UK RCT and PRIME-UK qualitative study and their responses.
Abbreviations: PD, Parkinson's disease; PPI, patient and public involvement; PwP, person with Parkinson's.T A B L E 2