INTERVIEW: Celebrating 30 years of AMRC with Arthritis Research UK By Leonora Neale, Communications Officer, AMRC Published: 22 June 2017 To celebrate AMRC's 30th anniversary we spoke to Liam O'Toole, CEO at Arthritis Research UK (one of our founding members) about the benefits of AMRC membership, the changes that have occurred across the sector in the last 30 years and what is in store for the next 30 years. How has AMRC membership benefited Arthritis Research UK over the last 30 years? Millions of people in the UK live with the pain of arthritis, and our membership with the Association of Medical Research Charities (AMRC) has enabled us to better amplify our voice on behalf of the medical research sector. AMRC understand the importance of investing in exceptional science to find breakthrough treatments, and supports our work in keeping charity medical research at the forefront of the government’s agenda. A recent example of this is our joint co-funding of a report called The Impact of Collaboration: The Value of UK Medical Research to EU Science and Health. Their support goes beyond providing a unified voice for the sector. AMRC helps to provide a sector-wide analysis of the political and policy landscape, and provides training and collaboration opportunities for our research managers. By encouraging collaboration and helping to amplify our messages across the sector, our membership to AMRC has consistently helped us in making a positive difference in the lives of people with arthritis. What is Arthritis Research UK’s biggest achievement(s) over the last 30 years? At Arthritis Research UK, we aim to invest in treatments and services that improve the quality of life for people who live with pain caused by arthritis every day. The introduction of biologics, from research funded by Arthritis Research UK, in the early 2000s revolutionised the treatment of inflammatory arthritis and has had an ongoing and lasting impact on UK medical research landscape. The first of these biologic therapies targets a molecule called tumour necrosis factor, or TNF, which occurs naturally in the body and plays a key role in inflammation. Professors Sir Mark Feldmann and Sir Ravinder Maini, with their teams from the Kennedy Institute of Rheumatology, first uncovered the TNF molecule that causes inflammation and joint damage. We were key funders of this research, and it is one of our key achievements to date. Subsequent studies have shown that anti-TNF drugs, when used in combination with drugs like methotrexate, significantly improve disease symptoms and reduce joint damage. Anti-TNF treatment has had a massive impact on people with arthritis; they are recommended by the National Institute for Health and Care Excellence (NICE) for people with moderate to severe arthritis. The recently concluded SYCAMORE trial, which used biologic therapy to treat uveitis (and the potential blindness that can follow) in Juvenile Idiopathic Arthritis is a great example of the growing legacy of the TNF story, and how other biologic treatments can and are being used to effectively treat conditions. Emerging from our research into anti-TNF is the need to develop focused, ‘bespoke’ treatments to individual patients. This is called ‘precision’ medicine, and is perhaps one of the biggest challenges faced by modern medicine. The scale and nature of this challenge is exemplified in the number of studies into precision treatments, including MATURA, led by groups at Queen Mary University, and the University of Manchester. How has the medical research charity sector changed over the last 30 years? Charities are increasingly involving patients and the public in the development of research agendas. The impact of this crucial insight into how we shape, prioritise and deliver research simply can’t be underestimated. Arthritis Research UK is one of the leading medical research charities in incorporating public and patient involvement into the research funding decision-making process. As part of our strategic vision, we have innovated new ways of involving patients, fully integrating their input into all our research through close collaboration with a group we call our patient insight partners. These partners are a group of people from across the UK who have a wide range of experiences of living with MSK conditions. We collaborate with this group as part of setting research priorities, supporting researchers to undertake effective public and patient involvement, reviewing research proposals and monitoring and evaluating the outcomes of our research. Another change in the medical research sector is the repositioning we have gone through in the context of a dynamic and rapidly changing research and healthcare landscape in the UK. We are doing more and more to exert new positive influence across the sector, including funding transformative research in partnership with other funders: governments, industry and other charities. We are also working more with diverse collaborators including pharmaceutical companies, the NHS and local authorities. What do you think the next 30 years has in store for the sector? This is a hugely exciting time for medical research charities and the growing potential impact we can have, individually and collectively, on the lives of people with arthritis. There are several reasons to be optimistic about the future; from radical new innovations in research and technology, to using patient insight and developing innovative new approaches to funding research that meets key challenges. I have selected five examples of where we are making a difference through the power of research: New technology: Increasingly developing new technology to deliver better results for people with arthritis and this often moves us beyond the boundaries of our traditional research. We know, for example, that people with arthritis are constantly finding misleading information and inconsistent advice, that makes it difficult and stressful for them to find reliable information relating to their condition. Therefore, we are working with IBM to develop an artificial intelligence system that will be able to provide bespoke online assistance to people coming to us for help. Transforming health and health service research: We have identified this as a priority area, as part of our 2020 strategic mission to improve the quality of life for people with arthritis. Pain is a substantial barrier to independent living. Pain serves to underscore how serious MSK issues are and why we should use our insights to focus on solutions through an improved healthcare system. Our growing insight tells us that pain colours every aspect of the lives of people with arthritis and we’ve been tackling this by bringing together experts on pain, be that from organisations that deal with MSK conditions or from organisations that work in neuroscience. An exciting output of this work is a new plan, including a pain roadmap that we will use to identify how the most urgent areas of need can be best managed to crack an issue like pain. Partnerships and Influence: I think that increasingly charities will deliver more in the way of excellent research and deliver new services and products that make a tangible difference in people’s lives. We already have plenty of examples to draw on, such as established connections with government funding agencies like Medical Research Council, or emerging partnerships, such as that with the new mental health charity MQ. We have also been working with the Design Council; we know that people with arthritis want immediate solutions to everyday living, and this partnership will help us to deliver new and innovative products. Regenerative medicine including stem cells: This is an area of research we are taking very seriously, including through a major re-investment in our Centre of Excellence in Tissue Engineering. As part of our support we’ve recently co-funded research that has identified stem cells that could be used to help repair damage to knee joints affected by conditions like arthritis. Although it is still early days, the long term promise for this area remains high. Discovery medicine: Working towards developing a cure and more effective treatments: Looking at immune pathways was pivotal in the discovery of anti-TNF and biological treatments, but the job is not yet done. Work is still needed to understand exactly how current treatments work, why they have varied effectiveness in patients and stratifying who gets what treatment and when. This also extends to identifying, understanding and targeting pathways which have yet to be explored. Our work in genetics examines how these factors play a part in developing arthritis, and how small changes in genetic code can influence the disease process. We still have a long way to go, but medical charities will have a clear and important role in helping to support the vital research underpinning this fundamental area, which is so vital in helping to improve the lives of people with arthritis. These broad areas provide an immense opportunity to the medical research sector to use innovations in science and technology to truly transform people’s lives for the better. We at Arthritis Research UK are excited to be part of this journey to make a real difference for people with arthritis.