Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study

Abstract Background Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods An explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research.


| INTRODUC TI ON
Valuing and strengthening relationships between researchers and patient and public contributors have been identified as a key component in enabling successful, embedded Patient and Public Involvement (PPI) in research. 1 Good communication, reciprocal trust and redressing unequal power relationships between researchers and members of the public have been identified in systematic reviews and literature as key elements in Patient and Public Involvement. [2][3][4][5][6][7] Different models of working together include consultation, collaboration and, increasingly, co-production. [8][9][10][11] Providing feedback to PPI contributors regarding the usefulness of their contributions can be viewed as an important way of developing positive relationships between researchers and PPI contributors.
However, research as well as anecdotal evidence suggests that routine feedback rarely occurs. 1,2,12,13 Researchers were first reported as failing to feedback to PPI contributors 10 years ago in the United Kingdom and was noted as "the single biggest issue raised by volunteers" 12,14 (p.65) . More recently, a qualitative systematic review by Baylis et al 15 reported that PPI contributors wanted detailed feedback on how their comments had influenced the final review paper and on their need for further training. When feedback is lacking, so too are PPI contributors' means of knowing whether, how or where their contributions may have been useful and so limit opportunities to identify, improve and enhance PPI in on-going studies. Absence of feedback can also lead to reduced motivation among PPI contributors to be involved in future projects. 12 The authors of a recent study confirm the continuing absence of individual feedback, concluding that "…feedback was seen as an important driver of impact improvement and motivation to stay involved in research" 16 (p.525) . Thus despite PPI guidance mentioning feedback, 11 the extent and variation of feedback from researchers to members of the public are not well-evidenced. This paper reports on the findings of a study which explored feedback from researchers to PPI contributors in health research to address this gap in the literature. Importantly, it was members of the public who initially identified this study idea as addressing a vital area for research.
The aim of this study was to determine variation in types, extent, importance of, and satisfaction with feedback given by researchers to PPI contributors and identify barriers to PPI feedback. The term 'Patient and Public Involvement' is defined by NIHR INVOLVE as "research being carried out 'with' or 'by' members of the public, rather than 'to,' 'about' or 'for' them" 11 (p.6) . Members of the public include patients, potential patients, carers as well as people from organizations that represent people who use services 11 and terms such as public contributor, service user and lay representative 17 are used.
This study uses the term "PPI contributor."

| Study design
An explanatory mixed method sequential study design was utilized with a questionnaire survey followed by semi-structured interviews.
The sequential design enabled the findings from the questionnaire to inform the interview schedule, 18 and the data collection methods were connected as the questionnaire identified the interview participants. 19 The questionnaire was anonymous but after completion participants were asked if they were willing to be interviewed and if so, they were asked to provide contact details. PPI contributors were involved in all stages of the research process, (see Table 1) and research meetings and PPI decisions were documented. 20

| Setting and participants
Participants were purposively recruited via six PPI groups (four NHS and two University groups) who are members of the PPI Regional Working Group (RWG). The PPI groups ranged in size from 15 PPI contributors to 70 with variation between the structures and methods of working; four groups described themselves as public panels, one a patient panel, one condition specific and all had a research focus. All groups had a PPI lead who circulated research documents to PPI contributors (by email or in paper format) and invited comments via the same method of distribution as well as face-to-face meetings. Communication between the researchers and PPI contributors was largely channelled through the PPI lead, especially when projects were being developed.
All 227 PPI contributors from the six PPI groups' databases (aged 16 or over) and 316 researchers, who had used the PPI groups in the last 18 months, were sent an invitation to take part.

| Data collection
The PPI leads (researchers did not have access to PPI groups' da-

| The sample
The characteristics of the questionnaire participants are listed in Table 2. Fifteen of these questionnaire participants were also interviewed; six researchers and a subsample of nine of 32 PPI contributors, who gave their contact details, were purposively selected using a maximum variation sampling approach (PPI group, demographic characteristics (age, gender), PPI and feedback experience). The researcher "other" category included Principal investigator, research nurse, sponsor, lecturer. and PPI leads ( Table 1). The qualitative open questions from the questionnaire and the interview data were entered into NVIVO (Version 11). The two sources of qualitative data were integrated through merging, and the interview themes were initially mapped onto the survey themes. 19 The qualitative data analysis took an analytical approach which was guided by the principles of the constant comparative method. 21 Three PPI contributors (DM, NR and GR) read two interview transcripts each, two researchers (EM/HW) read all the interviews and four PPI contributors (DM, NR, GR and PM) met to discuss interview themes. Analysis was carried out both within and between themes and care was taken to avoid decontextualization by referring back to the original data and context.

| Data analysis
Saturation of data was achieved when no new themes emerged.
The integration of the quantitative and qualitative data occurred at the interpretation level with both findings being presented together on a thematic basis. 19

| Ethics
The study received approval from the Proportionate Review

| FINDING S
A total of 107 participants completed questionnaires; 68 PPI contributors (10 completed on paper) and 39 researchers ( Table 2).
This was a response rate of 30% for PPI contributors and 12% for researchers. The quantitative data from the survey questionnaire are presented alongside qualitative quotations from PPI contributors (PPICo) and researchers (Res) from the questionnaire The main findings are presented in five parts with subsections; firstly, the meanings of "feedback" are presented, secondly, the extent and variation of feedback (frequency, mode, type), thirdly, the importance of feedback, fourthly, satisfaction of feedback and lastly, the barriers to providing feedback.

| Definitions of feedback
It was a deliberate decision by the research team not to provide the questionnaire and interview participants with a specific definition of "Feedback," as it was felt important that an exploratory approach was adopted and participants were able to provide their own interpretation. The answers are grouped into three broad themes: an acknowledgement, impact on research and study success and progress.

| Feedback: An acknowledgement
The importance of receiving an acknowledgement from researchers was a recurrent theme from both questionnaire and interview par-

| Feedback: Study success and progress
A third feedback theme was feedback on study application success (in terms of funding or ethics approval) and also feedback about the on-going progress of the study (ie. research stage, papers published, outcomes of the research and summary of project).
One PPI contributor felt that feedback gives a clear understanding of progress (or not) of the research project" (Quest: PPICo34).

| Frequency, mode and type of feedback
One of the aims of the questionnaire survey was to find out the extent to which PPI contributors received feedback on their comments.
The findings showed that nearly one in five (19%) of PPI contributors never received feedback whilst one-tenth (11%) of researchers said they never gave feedback (Table 3). Sixty-five percent of PPI contributors and 45% of researchers said they sometimes received (and gave) feedback.  Reciprocity was seen as both parties gaining benefit from the relationship. Interviewees described the PPI process and feedback using directional terminology, such as PPI being "a two-way communication"
Interview participants discussed feedback as remaining import-

| Satisfaction with feedback
Of those PPI contributors who had received feedback, one-quarter (25%) were generally very satisfied with the feedback and two-fifths (42%) were fairly satisfied. However, some PPI contributors were either fairly unsatisfied (15%) or very unsatisfied (4%). Researchers were also asked if they were satisfied with the feedback they gave, as shown by Table 5.
Satisfaction was analysed as very or fairly satisfied versus other responses. The length of involvement and the number of previous studies participants had been involved in were not associated with satisfaction for either the PPI contributors or the researchers.
Analyses were therefore not adjusted for these variables. Table 6 shows that there was a positive association between satisfaction and timely feedback (P = 0.007) for PPI contributors. There were also associations between satisfaction and the type of feedback; comments had been useful (P = 0.015) and comments had led to changes-details given (P = 0.008). For researchers, there was a marginal association between giving feedback as dialogue and satisfaction (P = 0.054). Therefore, PPI roles, such as being a co-researcher, which involves dialogue and face-to-face contact, may potentially be more satisfactory in terms of feedback. The qualitative data support these findings with PPI contributors dissatisfied with the lack of feedback, demonstrating lack of respect and value (as outlined earlier).   Many recent studies and toolkits have highlighted the importance of PPI contributor and researcher relationships 1,33 and findings from this study confirm its significance and complexity.

| D ISCUSS I ON
However, the three-way relationship between a researcher, PPI lead and PPI contributor is less well-known or discussed. The importance of this relationship emerged as a finding from this research. It is clear that PPI leads were seen as positive facilitators for enabling successful PPI and feedback can act as an important mediator between researchers and PPI contributors, especially for document review, one-off or new involvement. However, their presence may also create some distance between the two and may result in researchers not being aware of the needs or expectations of the PPI contributors. The PPI lead adds complexity to the dyad of researcher-PPI contributor communication and relationship. In those cases where PPI contributors are not attached to a PPI group (and PPI lead), it will be necessary for someone in the research team to take responsibility for feedback.
It is acknowledged that this small-scale study has limitations.
Although statistically significant associations with satisfaction were identified, due to the low numbers completing the questionnaire, it was not possible to conduct multivariable analyses making the drawing of conclusions difficult. In addition, bias may be an issue due to the low response rate and those who filled in the survey and took part in the interviews may be atypical of the wider population. The distribution of respondents across the six PPI groups may also be a limitation.

| CON CLUS ION
In the pressured world of short-term contract-based health research, PPI and feedback are not always seen as a priority despite PPI now being a policy imperative and prerequisite for health research. 34 However, PPI feedback should be an integral part of the wider research process to be designed and costed, and then systematically reviewed so as to maximize mutual benefits and continuing learning from the PPI contribution. This research has demonstrated that PPI feedback can be viewed as a key mechanism for successful, embedded PPI. 35 Feedback is a demonstration of PPI maturing and becoming an intertwined part of the PPI process. Feedback can enable PPI contributors to feel valued, motivated and learn, and for researchers, feedback offers the opportunity to reflect on PPI impact thus providing the potential to improve the PPI evidence base and research practice.

ACK N OWLED G EM ENT
We would like to thank the six PPI groups in the East of England, the PPI contributors and researchers who were involved in the research process; the PPI group leads for their support and organization of the survey; members of the Regional Working Group (RWG) who initiated the idea and all the participants (researchers and PPI contributors) who gave their time to take part in the study.

CO N FLI C T O F I NTE R E S T
No conflict of interests.