25 June 2019
Dr Cat Ball, Senior Policy Manager at AMRC, talks about how medical research captures hearts and minds in the UK
I’d hedge a bet that if you stopped someone in the street right now and asked them about the government’s commitment to invest 2.4% of UK GDP in R&D by 2027, the best you’d get would be a blank stare. That would be understandable – policies on R&D investment don’t tend to be of the vote-winning, triggering-the-cross-in-the-box kind.
But, while numbers-based input targets for R&D don’t tend to resonate with the public, we know that there’s one area of research that certainly does. Medical research is close to the nation’s heart; over the last five years it has topped the list of causes that the public chose to donate to three times, slipping down to second place twice. This public support means that, collectively, members of the Association of Medical Research Charities were the largest public funder of medical research last year. They invested over £1.3 billion in UK R&D in 2018 – more than government funders the MRC or the NIHR.
Many people will go to extreme lengths to show their support for charity-funded R&D. Activities like running a marathon, cycling across the desert, or even getting private parts waxed in public (ouch!) are pretty commonplace. National shows of support for investment in charity R&D like Stand Up 2 Cancer are prime-time TV viewing and medical research funders are quite literally high street names, with Cancer Research UK or British Heart Foundation shops a ubiquitous feature in town centres. No other country has anything quite like this.
So to answer the question of what it could mean for the UK to achieve 2.4% of UK GDP invested in R&D, it’s important to get to the root of why the public care so much about medical research. What makes people go above and beyond? It’s about hope. Hope that a loved one will get better or that new, kinder treatments will be developed. Or even hope that ground-breaking cures will be found which mean that other people don’t have to suffer. This is a key piece of the picture of what achieving the 2.4% target can bring to the UK and how it can really resonate with the public.
Medical research charities are familiar with hope – it’s their driving force. It’s pushing many of AMRC’s members to adopt big, ambitious ‘moonshot’ goals. Whether it’s to accelerate progress to see three in four patients survive cancer by 2034 or to open-up the opportunity to live a life unlimited by Cystic Fibrosis, it’s all about a focus on achieving transformational outcomes for people. In an era of mission-oriented public R&D investment policies, charities are already there, driven by hope.
Charities have become adept at translating hope into practice by putting the those affected at the heart of their work. Patient- and community-centred approaches to research involve those with lived experience as ‘experts by experience’. This can take a variety of forms, including involving patients in strategy development, engaging with patients to define research needs and questions and having patients take part in the peer review process.
Shifting focus to people’s needs has meant that many charities have broadened their research strategies. Where previously they might have been centred on response-mode funding focused largely on the cause or cure of a disease, taking patient views into account has meant that many charities have moved towards a more dynamic strategic investment approach to try to make the lives of people living with a condition that bit easier. As well as a cure and more understanding about a disease, people want new ways to make their lives better and new approaches to managing symptoms.
Parkinson’s UK’s is a great example of one of AMRC’s members whose research portfolio has diversified to more closely meet the needs of their community. As well as a cure being a priority, people with Parkinson’s want new therapies that will help them manage aspects of the disease that get in the way of everyday life. To get closer to achieving this, the charity has taken a radical approach and set up a drug discovery arm - the Parkinson's Virtual Biotech. It works just like a regular biotech company, but instead of doing it for profit, the charity are doing it for people affected by Parkinson's. Their mission is to invest more than £4 million per year to fast track projects to rapidly develop and test treatments with the potential to transform life for people with Parkinson's.
Another great example is Autistica, the UK’s autism research charity. They are pioneering truly innovative ways to include autistic people in the research they fund. In response to that fact that more than 9 out of 10 autistic people have differences in sensory processing, Autistica have developed a partnership with the Alan Turing Institute to design a scalable citizen science platform which autistic people (and others) will use to input data on how they navigate different environments. Amongst many things, it is hoped that the results will provide an evidence base to adapt environments and encourage wider empathy for autistic people. Ultimately, they hope to empower the community.
So, while at first the 2.4% target might appear as a technical piece of policy that’s only likely to draw excitement from the wonks amongst us, it’s actually much more than that. Particularly where medical research is concerned, reaching 2.4% means hope for the nation. Hope that can be translated into increased patient-centred research and the ambition to achieve transformative outcomes for patients, their families and supporters.