The HRA is here to make it easier to do research that people can trust. And if we’re going to make sure that people really can trust the research that we approve, we need to know what issues matter to people. People who are involved in research of course, but also people who have not yet been involved, or may never have thought about whether they would like to be. People who will never have heard of the HRA, and may never hear of us. That’s why we do surveys of public attitudes – to hear from everybody and get a broader view.
Our last survey of this type was back in 2017. As a result of the Covid pandemic the profile of health and social care research has changed significantly since then, so this year we commissioned a polling company called YouGov to conduct a survey to better understand what earns people’s trust in research. Because it is hard to ask about trust as an abstract concept, we explored what might impact whether people would feel comfortable taking part in research, or them using its findings.
One of the most important findings is that some groups are less confident to take part in research than others. This is important because different groups of people can be affected differently by the same conditions, and there is variation in how effective treatments are for them. We can only understand these differences and improve care for everyone if everyone is confident and able to take part in research.
While we asked slightly different questions and cut our data in different ways so the findings are not directly comparable, it looks like this may not have changed much since our last survey.
In this survey, for each of the questions we asked, we looked at variations in attitudes across more specific groups of people. We also used slightly different language.
The survey found that 30% of Black people were worried they would not be treated well if they took part in a health or social care research study. This is significantly higher number than White people (18%) and Asian people (20%).
This shows us we have much more to do to so that everyone feels confident to take part in research.
Using this understanding to do better
Our findings give us a better understanding of how the issues that matter vary for different groups of people.
For example, public involvement in research largely increases people’s confidence to take part – but this is not true across the board. 12% of ethnic minority adults are actually less confident about participation if they know members of the public are involved in deciding funding priorities (this compares to 8% White adults).
This tells us that if we want to really include, there is no quick win. We need to understand this diversity and how we can do things differently so that everyone can feel confident to take part in research.
What we're doing now
We recently set up our new Community Committee Our Community Committee - Health Research Authority (hra.nhs.uk). Together we’re going to make better decisions by bringing different perspectives, and supporting us to find ways to reach out and listen to many more.
We co-created with researchers and patients nine hallmarks of people-centred clinical research, which put ‘making it possible for people to take part’ as one of three guiding principles. We want these to change practice so more people will feel confident to take part in research. We launched these hallmarks last month.
We’re currently building relationships with community groups who we’re not already engaged with to learn how the work we do, and how we talk about it, is received, heard, and understood. We're using this to inform how we work.
These are all fairly recent projects which form part of our strategy, launched last year, to make it easy to do research that people can trust. Whilst building that trust and changing attitudes takes time, we’re committing to reporting on the steps were taking the progress we’re making so the next survey shows change. Please do hold us to account.
Director of Policy and Partnerships