The Health Research Authority is making it easy to do research that people can trust. To do that well, we are constantly asking ourselves how we can earn people’s trust in research and what we can do to keep it.
How we do research is always changing, with new technology and approaches enabling us to do things in new ways. So, how do we make sure that we maintain trust in research in changing times?
As part of our 10th anniversary celebrations, we teamed up with the Nuffield Council on Bioethics to run a workshop exploring how new ways of doing research are challenging public trust. The Nuffield Council is an independent body that explores and advises on ethical issues in science and health so that decisions in these areas benefit people and society – so they were the perfect partner with whom to host this important discussion.
Members of HRA’s Public Involvement Network helped us to plan how to make the session accessible and meaningful for everyone taking part. With their support, we created an inclusive space for fascinating conversations about trust, power and change.
In this blog, meeting chairs Juliet Tizzard from the Health Research Authority and Sue Tansey from Nuffield Council on Bioethics share their reflections on the discussion.
Bioethics is all about bringing people from different backgrounds together to talk about ethical issues in healthcare and research. So, when thinking about what ethical issues might crop up in health and social care research over the next decade, it was important to us to bring a diverse group of people together. Through the Nuffield Council on Bioethics’ connections, we were able to include leading international research ethicists and through the Health Research Authority’s networks, we drew together people who have experience of shaping research studies and taking part in in them, as well as the people who carry out research and review it.
It’s all about trust
Our conversation centred around trust and exploring that from the perspective of the person taking part, rather than through a more theoretical lens.
We talked a lot about what makes research trustworthy. That includes focussing on research questions that are important to patients; making research accessible and visible and easy to understand; and designing it with people with relevant lived experience to make sure that it is acceptable to them. It means communicating not only the results of studies, but also conveying updated information to participants throughout studies. It also means making sure that research is translated into practice, valuing the contribution that people taking part in research make every day.
It became clear that the checks and balances already in place to ensure that research happens in a way that people can trust are very reassuring – once people know about them. This chimes with the findings of the HRA’s recent public dialogue, which found that people want to know that research ethics committees exist and are reassured when they know this kind of oversight exists. We need to do more to create this public visibility about who checks that research is ethical and how they carry out those checks. We also heard that it could be helpful to provide more information to the potential participants on the clinical research process in general rather than just in relation to specific studies. Transparency is key.
Does ethics review need to change?
We talked about the scope of research ethics review. Currently, the review takes place before a research project can begin and at a later stage only if that project is changed. Some felt that it might be beneficial to have a more continuous process of ethics review and input. Additionally, the issues that are important to earn people’s trust in research are not limited to those traditionally seen within the scope of a research ethics committee. Instead, they include decisions over why one research project was selected over another, particularly where there may be scarce resources to support research and ensuring that the findings are used to improve care. We considered whether ethics committees’ remit should include prioritising which research gets done.
To earn people’s trust, we heard that we need to consider all these issues in the round as ethical issues, rather than them being in the separate domains of funding bodies, research institutions or regulators. That will take better collaboration between the different research bodies.
Giving up power
We heard from people with lived experience of research about the importance not just of good practice in research but of sharing power. When researchers share power with patients and the public, rather than just consult them, that builds trust. Research should be a partnership between researchers and patients, with co-production and real shared learning, rather than something that is ‘done’ to someone else, even with the best intentions at heart. Misinformation needs to be addressed by for example communicating through trusted sources.
Ensuring that research is ethical is less about ‘protecting’ people taking part from harm and more about enabling them to shape the research and make informed decisions about how they would like to be involved – particularly as new technology opens up questions about future possibilities that we can’t answer right now. And this extends to everyone – no-one should be excluded because researchers have not done the work to understand how to include them. Research should be adapted to ensure inclusion of a diverse population.
Whilst our workshop asked about the research ethics issues in the next 10 years, our discussion often returned to the real issues of today for patients and research participants, which remain pretty constant whatever new research approaches and new technologies throw at us. That if we start with an open mind and a willingness to work in true partnership with patients, we will build the trust needed to navigate whatever is coming next.
Read more about the HRA’s new strategy, Making it easy to do research that people can trust
Juliet Tizzard, former Director of Policy and Partnerships Health Research Authority
Sue Tansey, member of the Nuffield Council on Bioethics and independent Consultant Pharmaceutical Physician.