Table 4 Identified themes mapped to the UK Standards for Public Involvement
UK standards | Themes | Quotes | Insights Framework domain |
|---|---|---|---|
Inclusive Opportunities | Widen involvement | Quote 1 (Q1): “We are working with groups across the nine protected characteristics covered by the Equality Act 2010 (age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation). Identifying partners who work with vulnerable, minority and seldom heard populations is key to building mutually beneficial relationships and ensuring that a diverse, broad range of the population is represented by our research.” (MedTech and In Vitro Diagnostics Co-operatives; MICs) | Leading |
Strategic level | Quote 2 (Q2): “We worked in partnership with both long-standing and new PPIE contributors from under-served communities (including Lesbian, Gay Bisexual and Transgender (LGBT+), ethnic minorities, carers and young adults) to inform our BRC-4 PPIE Strategy.” (Biomedical Research Centre; BRC) | Learning | |
Building sustainable relationships | Quote 3 (Q3):“We will co-produce a way forward for the partnership and identify what needs to change at local and national levels to ensure an ongoing relationship.” (Research Design School; RDS) | Leading | |
Quote 4 (Q4): “We will continue to form new connections, sustaining community connections over time, or developing new ways of communicating and engaging with public members about research.” (BRC) | Learning | ||
Quote 5 (Q5): “Public engagement virtual event with (organisation). This organisation offers training and support for under-represented and ‘hard to reach’ minority ethnic groups, as well as economically and socially disadvantaged communities.” (MICs) | Welcoming | ||
Working together | Defining public involvement | Quote 6 (Q6): “Series of strategy development workshops held where mixed groups of PPI representatives, academics, PhD students and PPIE leads from the region shaped draft objectives and discussed methods to deliver these. PPI representatives reviewed and shaped eventual PPI strategy document.” (Collaborations for Leadership in Applied Health Research and Care; CLAHRC) | Leading |
Methods of working together | Quote 7 (Q7): “Our PPIE Team organised and delivered the Summer School in June 2020; the school was delivered online to allow PPIE members to take part in a mixture of live interactive lessons, pre-recorded videos and group work in their own time.” (BRC) | Learning | |
Stages of the research cycle | Quote 8 (Q8): “Members of the (PPIE) network have contributed to the production of a successful proposal to the NIHR PHRP for funding.” (Research School) | Learning | |
Quote 9 (Q9): “Two public contributors are part of the study team. Both assisted with the refinement of the study design, developing patient-facing materials and have taken part in data analysis sessions to assist with interpretation of the findings.” (Research School) | Learning | ||
Quote 10 (Q10): “The study is a mental health service user-led project with over half the research team identifying as service user or survivor researchers, including the Principal Investigator, and two practitioner researchers.” (Research School) | Leading | ||
Collaborating with wider networks | Quote 11 (Q11): “We work with partners across the (geographical location) to share resources, identify joint projects and areas for collaboration, build capacity, develop community partnerships and promote best practice.” (BRC) | Leading | |
Support and Learning | Resources for PPIE members | Quote 12 (Q12): “The Involvement Coordinator continued to share links to resources and learning opportunities through a network of theme-based involvement champions and provide one-to-one support as required.” (Applied Research Centre) | Learning |
Quote 13 (Q13): “…Used ‘buddy’ system—had phone call with experienced public member prior to meeting to discuss how meetings worked, and to put at ease.” (ARC) | Welcoming | ||
Resources for academic staff | Quote 14 (Q14): “We delivered the first of a series of training sessions. Eight researchers attended and interactive polls pre and post training showed increased knowledge of PPI and increased confidence delivering PPI activities. PPIE members are also invited to attend training sessions.” (Patient Safety Translational Research Centres; PTSRC) | Learning | |
Communications | Co-producing study materials | Quote 15 (Q15) “(PPIE activity) included ensuring our research materials are easily understood i.e. PPI contributors helped write consent forms.” (Research School) | Learning |
Dissemination strategies | Quote 16 (Q16): “Most recently, we have seen the launch of videos involving LGBTQI + Disable People on the findings from (programme of studies) all of which have included relevant individuals within those videos and in developing the content for them.” (Research School) | Learning | |
Digital inclusion | Quote 17 (Q17): “Researchers will aim to be flexible in offering virtual meetings and in providing a contribution towards telephone or broadband costs for virtual meetings. Where possible the meeting platform will enable people to dial in.” (Health Protection Research Unit; HPRU) | Learning | |
Quote 18 (Q18): “…We offered technical support where necessary, (i.e., guidance on using online meeting platforms e.g., Zoom/ Microsoft teams). Ensured online meetings are not too long, with built in times for informal discussion or breaks.” (PTSRC) | Learning | ||
Quote 19: “Future work must offer both online and in-person options particularly as our activity now involves people nationally but also in response to positive contributor feedback that it is more accessible.” (BRC) | Learning | ||
Impact | Levels of impact | Quote 20 (Q20): “Making the video—and a patient being the 'face' of the training—was an enjoyable and rewarding experience. I felt like an equal in the process and felt valued and respected in terms of my input.” (PPIE Member—BRC) | Leading |
Evaluating PPIE activities | Quote 21 (Q21): “Evaluating the impact of our PPI/E is a process of: Evaluating the activity against its aims to ensure the aims have been reached; Gathering feedback from participants involved in PPI/E both participant and researcher to have a clear pathway for future improvement and shared learning” (ARC) | Learning | |
Governance | Share decision making | Quote 22(Q22): “Public Involvement governance processes, leadership and a central budget are in place with representatives for all members ensuring collective ownership.” (Research School) | Leading |