This report provides a record of the role of the PPI group within the ReGROUP study, including the development of the initial application, obtaining ethics approval, project management and contributions to individual workstreams.
Application development
An initial half-day workshop was attended by seven patients with experience of long-term conditions and accessing primary care. The project manager outlined the project and invited an open discussion about the project in general, and specifically where and how the group felt the project might benefit from PPI. Members of the group were also asked to discuss what they thought a support package for GPs might look like (see Table 25).
Overall, members of the group were supportive of the scope and content of the project and shared the project team’s concerns regarding the retention of experienced GPs.
There was an initial query from project academics about whether or not GPs, as the subject of the project, should constitute the participants of the PPI group. However, the workshop attendees were emphatic that a patient voice was essential throughout this project for two reasons. First, any strategies designed to influence GPs’ working patterns are likely to affect patients, particularly those with multimorbidities or long-term conditions. Second, participants felt that the public would be able to contribute to the development of policies or strategies through their awareness of issues in primary care that might lead to wasted GP time, and of which neither researchers nor health professionals were aware. Participants thus felt that they would be able to contribute a unique perspective to inform the project’s outcomes.
Outcomes
The points raised by the PPI group were well received by the project team and their recommendations significantly informed the final application, which saw PPI activities embedded throughout the project (Box 4). The full bid was also reviewed by lay representatives, and workshop attendees also commented on and amended the lay summary.
Responses of the PPI group in the application development workshop to the task ‘what issues are GPs facing and what would a support package look like?’
At-a-glance summary of the PPI activities in ReGROUP
Ethics application
The ethics application was submitted before the start date of the project and the final PPI group was formed. However, three members of the initial workshop reviewed the documentation for the ethics application and their written comments were incorporated into the final versions of these.
Post award
Patient and public involvement group recruitment and composition
The project PPI group was recruited from local PPI networks. People who had attended the initial workshop were invited to continue participating. The final group consisted of two men and five women, representing individuals with experience of a range of long-term physical and mental health conditions and experience of regular contact with GP/primary care services. Some of the group also had experience as carers for elderly relatives or for children with life-altering health conditions. One member had extensive experience as a lay representative within CCGs, and with the Quality Outcome Framework as a lay assessor of general practices.
Initial patient and public involvement meeting
At the outset of the project (January 2016), the PPI group was invited to a half-day workshop facilitated by the PPI lead (JW), the project manager (EF), a qualitative researcher (AS) and a systematic review researcher.
Aims
Following introductions, members of the project team presented an overview of the project workstreams and PPI members were encouraged to ask questions and to participate in active discussion. There was a particular focus on the systematic review and qualitative workstreams and how PPI might be incorporated.
Outcomes
The PPI group discussed, agreed and documented ways of working, including contact preferences, times/days for meetings, meeting venues, payments and confidentiality. Throughout the project, PPI representatives were paid £25 per half day plus travel expenses at UEMS rates.
In addition, the PPI members were given access to training in systematic reviewing and qualitative research methodologies provided through the NIHR Collaboration for Leadership in Applied Health Research and Care, South West Peninsula (PenCLAHRC) early in the project.
Patient and public involvement in project management
Two PPI representatives were initially selected by the broader group to attend the monthly project management group meetings. Unfortunately, one member had to step down after the first meeting owing to illness. However, as the other member (AA) had considerable experience of lay representation around primary care, it was not considered necessary to replace the other member. Alex Aylward attended almost all of the meetings and proved to be an exceptionally valuable and supportive member of the project team. In addition to contributing to discussions, Alex Aylward reviewed and provided feedback on all draft papers and conference abstracts and assisted with the flow and running of the PPI group meetings.
Involvement in workstreams
Workstream 1: systematic review
A meeting was held between the PPI lead (JW), the systematic review lead (RA) and one of the systematic review researchers to consider how best to involve the PPI group in the review. Given the time constraints of the project and the need to produce findings promptly, the review process was under way before the PPI group was in place. It was decided that the PPI group could have the most impact by being involved in sharing and discussing emerging findings from the review with the systematic review team.
A half-day workshop was held in June 2016, attended by Rob Anderson, the project information specialist, one of the systematic review researchers and the PPI group.
Aims
The aims of this workshop were to provide an overview of the project (by way of reminder), to overview the systematic review process, and preview and discuss emerging UK findings, specifically regarding:
the different ways GPs leave practice/reduce hours
results from quantitative surveys of GPs
indications from qualitative interview studies.
Findings were presented visually with Microsoft PowerPoint® (Microsoft Corporation, Redmond, WA, USA) (quantitative results) and a colourful paper-based ‘mind map’ (see ) of the initial findings of the qualitative synthesis. The materials were circulated to the group for future reference.
Outcomes
As a result of this workshop, the systematic review researcher reflected that the PPI comments ‘may add to our understanding of particular themes that have emerged in the qualitative synthesis’.
A detailed reflection on the PPI discussions is provided in Appendix 10. This summarises how the discussion ‘broadened our understanding of the above literature-derived themes (especially in response to the initial synthesis of qualitative interview-based studies)’. The themes identified were flexible working, continue and cope, viability of early retirement, ageing, partnership issues, and commitment and investment. Themes around organisational changes identified were referrals, doctor–patient relationship, patients’ demands and practice demands. In terms of professional culture, the theme of acceptability of early retirement was discussed.
An additional important benefit of this workshop for the PPI group was that it enabled the members to discover and discuss the broader context of the project and thus be better prepared for future PPI input.
The review of survey studies is now in press (i.e. Anderson et al.119), but the paper reporting the qualitative synthesis of the systematic review is still in preparation. Write-up of both of these papers also generated associated conference abstracts.
Workstream 2: census survey of south-west general practitioners
The survey instrument used in this project was based on that used in preliminary work, the design of which had been informed by that study’s PPI group.17 The current PPI group were, however, sent the survey via e-mail for additional comments.
Outcomes
The phrase ‘quit’ was replaced by ‘permanently leave’ in the final survey draft.
Workstream 3: qualitative research
An initial planning meeting was held between the PPI lead (JW) and the two qualitative researchers (AS and RT). As a result of this, the qualitative researchers decided to produce a briefing document for the PPI group with key areas on which they wished to receive PPI feedback.
The PPI group were offered the opportunity to attend a half-day qualitative research training course: ‘An Introduction to Qualitative Research’ delivered by the PenCLARHC (http://clahrc-peninsula.nihr.ac.uk/event/making-sense-of-evidence-an-introduction-to-qualitative-research1; accessed 4 December 2018). Several members attended. Others had either previously attended this course or contributed to PPI in qualitative research in other studies.
Workshop 1
This was held in October 2016 and was attended by PPI representatives and the two qualitative researchers. A short, plain English briefing document was circulated via e-mail with paper copies available at the workshop.
Aims
The aims of this workshop were to:
update the PPI group on the progress to date of the qualitative workstream
share and discuss early thoughts arising from the qualitative interviews with GPs
discuss possible solutions to the issues raised by the GPs in the interviews.
Outcomes
Notes from the PPI workshop were taken by the researchers and considered in their analyses. In particular, the need to consider the views of ‘staying’ GPs as well as those considering leaving direct patient care were highlighted.
Three key issues arising from the data were discussed by the group:
GPs are finding ways to cope with the demands of general practice. These include working part-time, taking career breaks and becoming a locum. How is this affecting patent care? What work patterns would be best for the patient (out-of-hours care, access to appointments, etc.).
GPs experience fear and (fear of) the risk of making mistakes or being complained about. This fear may affect their own health and well-being, anxiety and pessimism about the future of general practice and whether or not the current conditions will inevitably get worse. How is this affecting patient care and what might be done about it?
GPs feel that their role has changed. They feel that more demands are made from secondary care, that the amount and complexity of work have increased, that paperwork and administration have increased and that ‘the buck always stops with the GP’. What could help to reduce GPs’ workload and/or help them to manage it better? Can you give examples from your practice, what works and does not work from a patient’s perspective?
Workshop 2
A second workshop was held by Anna Sansom and Emily Fletcher in May 2017, attended by five PPI members. Anna Sansom produced the qualitative workstream findings in a briefing document for the group. The presentation and discussion followed the following format:
overview of approach and who was interviewed (AS)
each theme described (by AS) and discussed (by PPI, facilitated by AS) individually before moving on to the next theme
invitation to the group members to raise and discuss any other issues that they felt were important to the interpretation, understanding and implications of the findings.
The group was invited to discuss the following key points:
What could be done to help GPs with these issues? How might this affect patient care?
What role (if any) do patients have in helping to retain GPs?
Anything else you want to add?
The meeting was audio-recorded (with consent from the group) and Anna Sansom typed up summary notes after the meeting. Researcher reflections were included to identify any potential researcher bias.
These notes helped to provide content for both the qualitative report chapter, and also a PPI section for a paper written for an academic journal.
The write-up of the qualitative workstream reflects the PPI input, summarised below:
The group were sympathetic to the pressures GPs experience. They noted the negative impact this pressure might have on patients.
The PPI members suggested that there was opportunity and desire for patient involvement in supporting GPs and in the organisation and delivery of primary care.
Greater involvement and inclusion of PPGs could benefit GPs, in helping them to feel more valued and working to reduce GP fear around patient complaints.
A need for practice staff and patient representatives to be seen as ‘all being on the same side’, and for GPs and other non-clinical staff to trust patients as part of the practice team.
More involvement and inclusion of patients could support the relationship between patients and practice staff, thus helping to manage patient demands and expectations.
Involving PPGs as part of the practice team could help the identification of models and examples of good practice that could then be shared by PPGs with other practices.
Workstream 4: RAND/UCLA Appropriateness Method
In the early stages of the RAM workstream, the RAM researcher (RC) circulated explanatory documents to the PPI group. These included a plain English ‘Introduction to the RAM Process’ and a completed example from a previous research study.
Two planning meetings were held before the PPI workshop, attended by the RAM researcher (RC) and PPI lead (JW), and with a member of the PPI group (AA). Given the novelty and complexity of the process, it proved useful for Alex Aylward (with background experience of working as a lay representative with CCGs and general practices) to inform the development of the PPI process.
In October 2016, a half-day workshop was led by Rupatharshini Chilvers and Jo Welsman and attended by members of the PPI group. At this stage, the RAM categories and policy statements were in development, and thus there was scope to incorporate PPI into both the contextual information around the statements and the statements themselves that would be provided to RAM panel members. PPI was considered less relevant in the formal RAM panel process and analysis owing to its prescriptive and quantitative nature.
Aims
The aims of this workshop were to:
review the RAM process and give the PPI group the opportunity to ask questions and familiarise themselves with the aims and objectives of the RAM in the project
outline the boundaries for the policies and strategies for the RAM, in order to manage the group’s expectations around what PPI could and could not be included within the RAM process
obtain feedback from the group specifically around the consequences and impact of suggested RAM themes/categories for local communities or specific groups of patients.
Outcomes
Detailed notes of the discussions were taken by Rupatharshini Chilvers and fed back to the project team at the RAM development meetings. Discussion and action points raised for Rupatharshini Chilvers were documented. Although not all points were directly relevant to, or easily incorporated into, the RAM, these were noted for future consideration. Specific comments that were considered for incorporation into the RAM process are summarised in . Although some of this discussion did not feed directly into the RAM process, the concerns and issues raised were also discussed and incorporated into other workstreams, notably the qualitative research.
Discussion points and action points arising from the RAM PPI workshop
The contribution of the PPI group to the development of the RAM statements is acknowledged in the RAM chapter.
Workstream 5: workforce predictive risk modelling
Given the nature of the work involved in this workstream, no formal input from the whole PPI group was sought. However, Alex Aylward was involved in project management meetings and participated in discussions regarding results and interpretation, and commented on drafts of the write-up.
Workstream 6: stakeholder consultations
Alex Aylward received facilitator training and facilitated round-table discussions at the London stakeholder consultation meeting. In addition, two experienced PPI representatives from Leeds were recruited to attend the Leeds stakeholder consultation meeting as stakeholders in their own right to participate in the round-table discussions of emergent policies and strategies for retention, as described in Chapter 7. Both PPI representatives provided positive feedback via e-mail on the success of the meeting and on their experience of being involved in the conversations.
Additional patient and public involvement activities
Results meeting
In preparation for the stakeholder consultation meetings, the research team rehearsed presentations of the project’s results at a meeting attended by two PPI members, who fed back to help finalise presentation content.
Dissemination
Three PPI members attended an informal workshop to review their participation and input throughout the project, and also to hear the whole project’s conclusions. They were asked for their ideas regarding dissemination to non-academic/clinical groups. Following discussion, it was suggested that a short film or infographic could be produced, highlighting the issues of GP retention and the ways in which the public might support their GPs, based on the main findings of the project. In terms of routes for dissemination, PPI members suggested that these may include practice waiting room screens/websites, circulation to PPGs, CCGs and various patient care forums and condition-specific charities.
Report writing
Alex Aylward co-authored this PPI report. The report was circulated to the wider PPI group for comments and amendments.
In addition, the Plain English summary for this final HSDR report was circulated to all members of the PPI group for comments and amendments. The following key points were changed/incorporated/recommended:
‘quit’ was replaced by ‘leave’ in order to avoid negative connotations associated with GPs leaving the profession
‘stakeholder’ was replaced by ‘interested parties’ and ‘people with a specific interest in the subject’
‘workstreams’ was replaced by ‘activities’.
Conclusion
Patient and public involvement was woven throughout this programme, including input to the funding application, obtaining ethics approval, project management and contributions to the workstreams. Input was supportive and added the important element of the patient voice to the issue of the GP workforce crisis.
