Public involvement aim
The purpose was to involve people affected by the research and its outcomes at all levels of the programme. We strived to include meaningful public involvement/engagement and involve ‘the relevant people, not just the available people’. We worked with patient groups across the country close to where the research was being conducted.
Methods
This programme had excellent public involvement resourcing and a team-wide commitment to public involvement/engagement. This section describes work conducted for public involvement/engagement purposes.
An initial focus group discussed the programme and recruited interested local volunteers to help with steering. The programme was supported. Much of the discussion focused on themes already identified in focus groups exploring SSME. The public involvement plan subsequently included the following five areas of work.
Public contributors (research champions) in study groups
Our public contributors were stalwarts throughout the programme and are established as colleagues, providing a foundation for continued collaborative work. Over the programme, we worked with five team members, sustaining three active contributors embedded within the governance structure (operational, management, steering).
Reimbursements followed evolving reward and recognition guidance. One public contributor was recruited later in the programme from a particularly engaged Patient Participant Group (PPG) from a RCT practice, underpinning the interaction of the WS and development of relationships and networks throughout the programme.
Oversight and wider involvement through practice and local groups
To work with communities proximal to research sites where we had no existing networks, we engaged with local Diabetes UK groups and PPGs of feasibility study and RCT practices. The public involvement manager offered to visit every practice, attending 12 PPGs; a further 8 visits were cancelled owing to COVID-19.
Two online sessions were offered to PPGs from all practices. Attendance was sufficient but underwhelming (11 people in total). As we needed to communicate with PPGs via practices, we infer that this was not a priority for practices during the pandemic.
Support via the education stakeholders group
The Leicester Diabetes Centre (co-ordinating centre; Leicester, UK) Education Stakeholders Group, comprising people affected by T2DM with an interest in education, maintained a governance and oversight function for the programme, which was a standing agenda item with programme updates shared.
MyDESMOND development
MyDESMOND predevelopment work (see Intervention description) included 4 focus groups in 2016–7, comprising 12 people with T2DM. An early version of MyDESMOND was subsequently tested by nine people with T2DM and adapted using their feedback.
Dissemination
Dissemination of programme findings comprised in-person and electronic approaches.
An animation of the findings was created in Gujarati, Punjabi, Hindi, Polish and English (with subtitles) and shared via the website of the co-ordinating centre (www.leicesterdiabetescentre.org.uk/research-blog/embedding).
Two public engagement events were held in participating localities with Diabetes UK (eight visitors in total). Two dissemination talks were also held; one in-person (36 attendees; all Asian women) and one remotely (20 attendees).
Results/public involvement outcomes
Patient Participant Groups provided project governance and oversight, acted as a critical friend regarding project delivery in the local context and offered advice on recruitment, publicity, local culture and dissemination.
MyDESMOND focus groups led to adaptations, including:
- making the chat forum optional
- developing a non-judgemental section on diabetes distress and negative emotions
- inclusion of new weekly content on important topics
- development of user videos sharing their experiences.
Discussion/impact of public involvement
MyDESMOND was made available to over 25,000 individuals free of charge. Feedback continues to be collected, with content and functionality refined accordingly.
A rewarding element of the public involvement was developing positive working relationships with all of the research champions. For example, David joined the trial management group in early 2019 and provided useful guidance throughout on making T2DM SSME accessible in his role as ‘critical friend’. This was a useful, supportive and encouraging function for the team. David also feels that it impacted on his own life and perspective:
I was both pleased and a little scared to have been asked to be a part of the Embedding study team as a PPI. Pleased because it was something new to me and would add to my experience. A little scared I was the only person there that had not been to university, I need not have worried as the team accepted me and helped me to understand the things I did not know.
I learned about ethnography, I even went to an event at Leicester University about the subject and came away understanding it better. I had done courses about clinical research but, they do not show the amount of work involved in good data collection. That was an eye opener. I enjoyed it and I found it interesting. The next time, if there is one, I would like to be involved again.
Reflection and critical perspective
This public involvement was unusually challenging, owing partly to the intervention’s concept (people often assumed we were testing SSME effectiveness, rather than an intervention to increase SSME uptake), and because we needed to grow new networks in the RCT localities, which needed clinical and educational colleagues to leverage their local connections. This would be extra work for our colleagues under normal circumstances, let alone during a global pandemic.
Our approach to involvement was efficient, effective and provided ready access to local populations. However, PPGs may lack diversity and be unrepresentative of local populations; the PPG model is potentially ethnocentric. Furthermore, we needed to depend on practices for contact, and the priority afforded to public involvement differed between practices. However, as a starting point to engage communities, leveraging PPGs has potential and, in less challenging circumstances, may have led to further contacts in the wider community.
Changes from original plan for public involvement
A programme-specific public involvement group was planned, but initial public involvement showed the homogeneity of themes in education focus groups so, to avoid duplication, a general education public involvement group was established for the co-ordinating centre.