The HRA turned 10 on 1 December 2021. We’ve marked this by taking stock of how far we’ve come and looking to the future.
HRA is a community. That community is made up of around 265 staff – who are fab of course but who are less than 20% of the wider community. The wider community are the Research Ethics Committee and Confidentiality Advisory Group members, the Public Involvement Network, technical assurance advisers and many others who work with us on a range of issues.
The thing about communities is that we don’t need to know everyone, we don’t even need to know what everyone does. What matters is that we are a group of people brought together for a common purpose.
The vast majority of the HRA community are volunteers, and even those that aren’t contribute far more than the financial reward would demand. So it was important to all of us to celebrate and thank the community for their work over the last ten years.
We were thrilled to welcome three impressive speakers, demonstrating our power to bring together researchers, clinicians delivering healthcare and patients and the public – Prof. Sir Chris Whitty, England’s Chief Medical Officer, Lynn Laidlaw, patient and public contributor and patient researcher and Prof. Sir Leszek Borysiewicz, Chair of Cancer Research UK and an eminent researcher whose work on a human papillomavirus (HPV) vaccine led to routine immunisation for girls against cervical cancer.
They reflected on the progress we’ve made, and what the future might bring. Three key takeaways:
1. We are making a difference and we should be proud of that/If we didn’t have the HRA today, we’d have to invent it right now
No blushes were spared as our speakers showed us that the HRA has come a long way over the past ten years to become an invaluable part of the research system.
Sir Leszek reminded us what life was like ten years ago, when the challenges of setting up a study could lead to researchers giving up because it took so long. He commended the HRA for developing a responsive and responsible approach, reflecting that if we didn’t have the HRA today, we’d have to invent it right now.
And Sir Chris really brought into focus the difference that our work is making to the health and social care that people receive. Over the past ten years, every year has seen significant improvements in outcomes for many different conditions, and all of the research that underpins this transformative progress depends on the HRA.
In the last two years as we have faced the COVID19-pandemic, the UK has led the world in many areas of research. This feat would not have been achievable without the HRA acting extraordinarily fast to approve research while maintaining really high scientific and ethical standards. And without this contribution to the global research effort, we would be far behind where we are now in terms of the prevention of COVID, shaping the way forward, reducing the impact on society and the treatment of patients in hospital and primary care.
2. Success is built on relationships, conversation and collaboration
Lynn spelled out why research signifies hope to patients, that effective research needs to be practical and its findings disseminated, mobilised and used to improve people’s lives. To do this well, we need good public involvement, and that is built on relationships, conversation and collaboration.
She reminded us that public involvement is not a nice to have, but is how patients can give back and help improve research – no one will care about research more than people with conditions. And they would not get involved unless they thought it would help – researchers’ time is too important to waste.
We also heard that our work is successful because we are innovative, collaborative, and listen and respond to the changing needs of the research community and patients. Sir Leszek highlighted our engagement with the cancer community on more complex trial models. He valued that we were prepared to take part in the debate and discussion to move this agenda - one that really matters for cancer patients with limited time and options - forward.
3. We could be limited by a lack of imagination but HRA has shown itself to always think big!
And our speakers helped us to think big.
Lynn talked about the potential of authentic co-production in research and services, drawing on her own experiences. This is a neutral, value-driven way of working which shares power between researchers and the communities and people that their work can impact. As the pandemic has exacerbated existing health inequalities, these approaches are vital and, in Lynn’s words, ‘we must all get out there, meet people and talk about research’.
Sir Leszek gave us a flavour of just some of the emerging issues from cancer research that we will need to grapple with in future including:
- Running long-term studies to inform prevention – he predicted that newborn children will have their whole genome sequenced within 15 years or so, but studies will need to run into their 70s to help us better identify markers for cancers. Being identified with a marker for cancer will have social implications as well as medical that must be considered.
- Blood tests may help us make an early diagnosis of cancer, but without better skills to identify where that cancer is located, what does that mean for a patient?
- And while we now have a wealth of approaches that together help us address conditions such as cancer – surgery, radiotherapy, chemotherapy - we need to find new ways of designing studies to identify the best way to sequence these treatments to get the best outcomes for patients. There simply are not enough cancer patients in the world to do conventional phase 3 studies to get the answers that we need.
Lots of big questions, and from our community's discussions, I think that together we’re ready for the challenge.
Summing up
Our incredible speakers gave us such interesting, insightful and inspiring presentations and left us with the with the feeling that we are part of something special. And so our final words are to say to all the HRA community – thank you for everything you have done for us, for each other, and for health and social care research in the UK. Not just over the last two years where your work has literally changed the outcome of the pandemic, but over the last ten years where your work has changed the entire UK research sector. It is a privilege to be part of this community and inspiring to think what we will do next together.