Understanding who is and isn’t involved and engaged in health research: capturing and analysing demographic data to diversify patient and public involvement and engagement

Abstract

Background Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved in research tend to be aged 61 years or above, White and female. Calls for greater diversity and inclusion in PPIE have become more urgent especially since the COVID-19 pandemic, so that research can better address health inequalities and be relevant for all sectors of society. Yet, there are currently no routine systems or requirements to collect or analyse the demographics of people who get involved in health research in the UK. The aim of this study was to develop to capture and analyse the characteristics of who does and doesn’t take part in patient and public involvement and engagement (PPIE) activities. Methods As part of its strategic focus on diversity and inclusion, Vocal developed a questionnaire to assess the demographics of people taking part in its PPIE activities. Vocal is a non-profit organisation which supports PPIE in health research across the region of Greater Manchester in England. The questionnaire was implemented across Vocal activities between December 2018 and March 2022. In that time. Vocal was working with approximately 935 public contributors. 329 responses were received: a return rate of 29.3%. Analysis of findings and comparison against local population demographic data, and available national data related to public contributors to health research, was performed. Results Results show that it is feasible to assess the demographics of people who take part in PPIE activities, through a questionnaire system. Further, our emerging data indicate that Vocal are involving people from a wider range of ages and with a greater diversity of ethnic backgrounds in health research, as compared to available national data. Specifically, Vocal involves more people of Asian, African and Caribbean heritage, and includes a wider range of ages in its PPIE activities. More women than men are involved in Vocal’s work. Conclusion Our ‘learn by doing’ approach to assessing who does and doesn’t take part in Vocal’s PPIE activities has informed our practice and continues influence our strategic priorities for PPIE. Our system and learning reported here may be applicable and transferable to other similar settings in which PPIE is carried out. We attribute the greater diversity of our public contributors to our strategic priority and activities to promote more inclusive research since 2018.

Operationalizing the Consolidated Framework for Implementation Research to build and support the lived experience workforce in direct health service provision

“…We recommend future researchers consider recruiting widely across various university and community networks and budgeting appropriately for planning and executing co‐creation sessions including compensation for people's time and efforts. We also point researchers to recent work on capturing and analyzing demographic data to ensure diversity of participation and transferability of findings 60 . In light of these limitations, further research is required to corroborate the usefulness of this framework and the use of this framework in the context of people with LEX working in other roles such as administration, management, policy, research, and education.…”

“…We also point researchers to recent work on capturing and analyzing demographic data to ensure diversity of participation and transferability of findings. 60 In light of these limitations, further research is required to corroborate the usefulness of this framework and the use of this framework in the context of people with LEX working in other roles such as administration, management, policy, research, and education.…”

‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research

“…This includes those who had to discontinue their education due to financial hardships, individuals with limited availability due to caregiving responsibilities or multiple jobs, and those with disabilities or health conditions that hinder their ability to attend in-person meetings. Collecting more demographic data on individuals involved in health research, as suggested by some scholars (Keane et al, 2023), may not sufficiently address these significant challenges. Instead, these issues underscore the urgent need to grapple with essential ethical questions.…”