As begin the New Year, I’ve been reflecting on the many challenges we face in the world, realising how many stem from not having the right conversations with the right people, or from not really listening to what is being said.
Towards the end of last year, we published a new survey on public opinion regarding health and social care research. Reflecting on the results, I've considered what they mean for our work in the year ahead and beyond.
The key findings that really stood out to me were:
Strong public support: Building on a 2017 poll, the survey continues to show robust public support for health and social care research. A significant 67% of UK adults believe such research enhances health and wellbeing, and 75% expect dignity and respect if they participate in a study.
The importance of public involvement: Most UK adults are more likely to participate in a study where members of the public ensure that participant information is easily understood (55%) and research findings are accessible (54%).
Transparency builds trust and trust builds confidence: People are more confident in research findings if the research process and its outcomes are made public, such as by registering the research on a public register before it starts (65%) and making the results publicly available as soon as possible afterwards (65%).
Diversity in Research: Enabling a diverse mix of people to participate is crucial for understanding how different groups are affected by conditions and any variations in treatment effectiveness. Nearly all adults (88%) believe it's important for health and social care research studies to include a diverse mix of participants, even if it means higher costs (70%) or longer durations (74%).
What this means for our future work
While the findings are largely positive, they also highlight significant areas needing improvement, especially in ensuring all demographic groups feel confident and represented in research. For instance, while 67% of UK adults feeling confident that research enhances health sounds good, it also means 33% are not confident. The survey also found that 30% of Black people were not confident they would be looked after if they participated in a health or social care research study. This is higher than White people (18% not confident). It shows that we still have much work to do to ensure all groups have trust and confidence in research and feel able to participate.
The survey results align with our three-year strategy, Making it easy to do research that people can trust. Understanding, earning, and maintaining public trust is fundamental, as it directly influences participation in research and the acceptance of its findings. We knew the issues raised in the survey were important to public trust, but the survey gives us fresh insights on what we should be focusing on.
We already have some exciting projects underway to address these issues and help increase diversity in research, which we will continue to build on throughout the year. This includes our work with the MHRA to create a diversity and inclusion plan for researchers when they design clinical trials and clinical investigations. We’ll be launching our informal consultation on the draft questions and supporting guidance this year.
Conclusion
As we navigate 2024 and the remaining 18 months of our strategy, these survey insights are invaluable. They not only affirm our current focus but also guide us in our work with patients and the public to ensure health and social care research in the UK is more inclusive, transparent, and trustworthy for all.
Chief ExecutiveMatt Westmore