The INSIGHT project: reflections on the co-production of a quality recognition programme to showcase excellence in public involvement in health and care research

Abstract

Background The quality of Patient and Public Involvement (PPI) in healthcare research varies considerably and is frequently tokenistic. We aimed to co-produce the Insight | Public Involvement Quality Recognition and Awards programme, based on the UK Standards for Public Involvement (UKSPI) alongside an incremental scale designed by Expert Citizens (a lived experience-led community group), to incentivise and celebrate continuous improvement in PPI. Methods We used Task and Finish Groups (19/44 [43%] public contributor membership) to co-produce the programme which we piloted in three organisations with different healthcare research models. We used surveys and review sessions to capture learning and reflections. Results We co-created: A Quality descriptor matrix comprising four incremental quality levels (Welcoming, Listening, Learning, Leading) for each UKSPI standard. An assessment framework including guidance materials, self-assessment form and final report template. An assessor training package. The quality awards event format and nomination form. These materials were modified based on pilot-site feedback. Of survey respondents: 94.4% felt they had made at least ‘Some’ personal contribution (half said ‘Quite a lot’/‘A great deal’), 88.9% said they were ‘Always’/‘Often’ able to express their views freely and, 100% stated the programme would have ‘A lot of impact’/‘Quite a bit of impact’. During the project, we identified the importance of taking time to explain project aims and contributor roles, adapting to the needs of individual contributors and, using smaller bespoke sessions outside the main Task and Finish Groups. Conclusions We co-produced and piloted a quality recognition programme to incentivise and celebrate continuous quality improvement in PPI. One public contributor stated, “I feel strongly that the Insight framework and awards will raise awareness of the [public involvement] work going on in many community settings. [It] is likely to result in better sharing of positive practice, incentivising research groups of any size to start work or to improve the quality of [PPI] could be one of the main benefits. I’m excited that if this initiative takes off, regionally and then in the longer term nationally, it could be a significant step in advancing the [public] voice.”

Using the UK standards for public involvement to evaluate the public involvement sections of annual reports from NIHR managed research centres

“…To the best of the research team’s knowledge, this is the first study to determine the quality of PPIE activities relating to each of the UK Standards [ 11 ]. By using the four domains proposed by the Insights framework as markers of quality, researchers could distinguish between PPIE activities within each UK Standard.…”

“…To develop learning, quality PPIE must be defined and shared. A quality improvement framework called the Insight | Public Involvement Quality Recognition and Awards Programme ([ 11 ], henceforth referred to as the Insight framework) has recently been developed as a partnership between Keele University and Expert Citizens Community Interest Company (a lived experience group based in Stoke-on-Trent; [ 12 ]). Insight categorises PPIE practice in relation to each of the six UK Standards in four levels of increasing quality: ‘Welcoming’ (provides welcoming, safe and supportive environments and offers a range of positive and inclusive involvement options and experiences), ‘Listening’ (listens actively to the views of people with lived experience and uses feedback to inform ways of working, services and systems), ‘Learning’ (continuously learns what works well for people and demonstrates that changes and improvements have been made from lived experience), and ‘Leading’ (leads the way and shares with others how people are involved in research and the benefits.…”