As outlined in the 'include' pillar of our strategy, we want to ensure health and social care research is done with and for everyone.
Why it matters
We asked the public about research and 68% of UK adults said that they would take part in research if asked.
This is positive but it also means 32% are less likely or not sure whether they would take part and a quarter of UK adults are not confident or not sure that they would be treated well if they took part.
We also found that some groups of people are less confident - 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%).
So, we have work to do to ensure all groups have trust and confidence in research and feel able to participate.
This is important because increasing participation in research is crucial to addressing health inequalities effectively.
What is the HRA’s role in this?
We were established to protect participants and potential participants in health or social care research and to promote their interests.
One of the ways that we do this is by facilitating and supporting Research Ethics Committees, which review research involving people, their tissue or data to ensure it is ethical for them to take part before it can go ahead.
By doing this in a way that people can see and trust, we are part of earning people’s trust in research – so that they can be confident to take part and use its findings.
So we do have a role to play in moving the dial on making more people confident to take part in research.
But to be able to do that, they need to be able to trust that we are acting to promote their interests, including understanding what that looks like in practice.
Which is where inclusion comes in. It is part of doing research with and for everyone.
Four ways we are bringing wider attitudes, views and experiences into the ethical review process
1. Asking people what research issues matter to them to inform the best practice that RECs look for
We do surveys of public attitudes to find out how we can earn and build trust in research. Our latest survey showed that transparency, diversity and public involvement in research are important to build the public’s trust and confidence in research.
We are also building our networks with community groups and health and social care charities to better understand what research issues matter to people who may have lower levels of trust in research.
2. Bringing more diverse perspectives onto RECs
UK RECs are never going to perfectly reflect the diversity of UK society and that is not their job. REC members are not representatives of communities and we are not looking to represent every community on every REC – but together they bring a mix of perspectives to inform the RECs decision-making.
We can ensure that RECs are as diverse as possible. That might involve spreading the word via recruitment campaigns or identifying ways that make it possible for more people to say yes, such as changing when we hold meetings.
But while there is a lot that we can do to make joining a REC more accessible, we know that not everyone will want or be able to be a REC member, which is why we are both working to increase the diversity and inclusion of our REC members and develop ways for them to be informed by more diverse insights and perspectives.
3. Helping REC members to understand and consider whether different perspectives have informed the design of research
The HRA is providing guidance to help RECs to ask researchers questions about whether appropriate perspectives have informed the design of the research. This includes:
- our recent Quality Standards and Design and Review Principles
- our Inclusion and Diversity plan to help researchers improve the diversity of participants in the research
This will help change research culture and practice, making public involvement and consideration of who is able to take part in your research part of research practice. But RECs cannot do this alone, which is why the HRA also works with partners in the system to raise the importance of these issues throughout the research journey, such as our Shared Commitment to Public Involvement.
4. Opening-up RECs so people can see for themselves
If people have heard of them at all, RECs can seem pretty mysterious.
We are realistic. If we are going to do our job well, the HRA and RECs don’t need to be a household name, but they do need to be easy to find and understand when people need them.
We are improving information online so that people can easily find us and understand what we do and why it matters.
We are telling more accessible stories about what we do and the issues that our RECs consider.
We also want to open-up our RECs, so that people who are interested can see a REC operating in practice.
We are doing this carefully so that it does not disrupt the operation of RECs and the important work that they do. And we are learning from what people tell us.
This is just the start
This work can start moving the dial – helping to improve research culture and practice so that everyone can be confident to choose to take part in research if they would like to but the HRA cannot do this alone. We are working in partnership across the system and we are changing the way that we work. If we are going to move the dial so more people can trust research, they also need to be able to trust us.
We have recently established a Community Committee to bring different perspectives into our decision making. Made up of REC and CAG members and members of the public, we are bringing together people at the frontline of reviewing, being involved in, taking part in and potentially benefitting from research to share their views and help us to do better.
We are also focused on ensuring that we are a diverse and inclusive place to work.
Including runs through everything that we do.
Get in touch
If you have any questions about our Research Ethics Committees (REC), please email communications@hra.nhs.uk
Becky Purvis, Director of Policy and Partnerships at the HRA