Understanding who is and isn’t involved and engaged in health research: Feasibility of capturing and analysing demographic data related to patient and public involvement and engagement within a clinical translational research environment

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. Methods: We developed a questionnaire to assess the demographics of people taking part in PPIE activities run by Vocal. Vocal is a non-profit organisation which supports PPIE in health research across the region of Greater Manchester in England. We implemented the questionnaire across Vocal activities between December 2018 and March 2022. We analysed our findings and compared them against local population demographic data, and available national data related to public contributors to health research. Results: Our 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 we are involving a greater diversity of people in health research, as compared to available national data. Specifically, we involve more people of Asian, African and Caribbean heritage, and include a wider range of ages in our PPIE activities. 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.