In December 2021, the Health Research Authority turned ten. The milestone was an opportunity to look back at what we have achieved over the last decade, and look forward to what we can do next. This helped us to shape our new strategy. We held a joint meeting with the Academy of Medical Sciences, whose recommendation in 2011 led to us being created. It was an opportunity to bring together lots of different people who have a stake in what we do – including patients and the public, researchers, funders, other regulators and policymakers.
Becky Purvis, Interim Director of Policy and Partnerships
With the help of our two co-chairs, a public representative, Jennifer Bostock - Co-Chair of a Global Research Ethics Committee (REC) for Save the Children UK, former HRA NHS REC Vice-Chair and Ethics Lead for the National Institute for Health Research (NIHR) Research Design Service, London - and a researcher - Professor Chris Butler FMedSci, Professor of Primary Care at the University of Oxford - we went back quite literally to where it all started, discussing what we’ve done well, and what we can do better. We identified where there is more to do, and how the original vision for the HRA has evolved.
You can now read the full report of that workshop (as well as a blog by the co-chairs, sharing their initial impressions).
The whole report is packed with insights from those that took part, and I recommend grabbing a coffee and reading the whole thing, but three key takeaways for those in a rush:
We’ve achieved a lot but let’s be ambitious to do more – and here’s a to do list!
Much of the discussion highlighted that the HRA is no longer the ‘blocker’ in the system, where once it might have been. A big change from the AMS’s report in 2011 that found:
A new pathway for the regulation and governance of health research (AMS, 2011)The UK had a complex and bureaucratic regulatory environment is stifling health research…there was no evidence that these measures have enhanced the safety and well-being of either patients or the public.
The report sets out a list of priorities for the HRA for the next ten years:
- Working with others to embed research into everyday practice across an integrated health and care system.
- Embedding patient and public involvement at all stages of research from idea to impact.
- Improving equality, diversity and inclusion in research and regulation.
- Building regulatory innovations from the COVID-19 pandemic into business-as-usual practices.
- Supporting researchers to consider the ethical implications of their studies during research design and planning.
- Adapting to a more complex data environment, including new sources of data and new technologies for integrating and analysing data, and mitigating the impact of the ‘digital divide’.
- Enabling, identifying, and responding to innovative research approaches.
- Being clear that the remit of the HRA extends far beyond clinical trials for medicines.
- Improving regulation across the whole research and innovation pathway from end to end, through dialogue and collaboration with other stakeholder organisations and regulatory bodies.
- Building on engagement and coordination with international regulators.
- Communicating actively and widely to improve transparency, build trust, and increase the impact of health and social care research.
It’s all about people
Throughout the day, the focus was on the people who are at the heart of research. Whether we were discussing new approaches to trial design, or the potential of data and AI to revolutionise research, every speaker framed their remarks around the people who are at the heart of research, focusing on improving their opportunities to be engaged with, involved with and take part in research, and how research can better improve health outcomes for all of us. This really comes across in the report.
In particular, Dr Simon Stones, a medical writer and health advocate told us that ‘research was the best treatment I ever had’ and made the case for patients, their families and carers to be seen as equal partners in health research. He outlined his key characteristics of people-centred research – which you can read in box 3 on page 14.
Include AND Accelerate
The conversation at the workshop referred back to an idea in the Academy’s original 2011 report that led to the HRA being created - that regulation should safeguard patients AND facilitate research, and that the application of regulation should be both proportionate and symmetrical, rather than a one-size-fits-all model.
This was so important because back in 2011, the system was pretty asymmetrical with great research often being delayed because the systems to ensure that ‘poor’ research did not go ahead were unwieldy, slow and hard to navigate, slowing opportunities for research findings to improve care. The situation is a lot better now, but the conversation emphasised that continuing to get this balance right is key.
This is reflected in our new strategy making it easier to do research that people can trust, and its two complementary guiding principles to:
1) Include – health and social care research is done with and for everyone, and
2) Accelerate – research findings improve care faster because the UK is the easiest place in the world to do research that people can trust
And in that strategy we are clear that the HRA cannot do this alone. These are system-wide changes that we all need to work together to make happen, with all the people who took part in this workshop and many more.
This workshop was a great opportunity to bring together lots of different people who have a stake in what we do to help us reflect on our progress and look forward. It was a huge success because of the diversity of people who gave their time generously to take part. We’re looking forward to continuing to work together and making even more change to talk about when we turn 20.