Understanding who is and isn’t involved and engaged in health research
We share Vocal's learning about gathering demographic data about the people who take part in our activities. Read the summary of our paper here and follow the link to read it in full.
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 our strategic focus on diversity and inclusion, we developed a questionnaire to assess the demographics of people taking part in its PPIE activities. The questionnaire was implemented across Vocal activities between December 2018 and March 2022. During this 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 Our results show that it is feasible to assess the demographics of people who take part in PPIE activities, through a questionnaire system. Our data indicates 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 transferable to other similar settings.. We attribute the greater diversity of our public contributors to our strategic priority and activities to promote more inclusive research since 2018.