Greater patient focus is the future for arc
Reproduced from Issue 138 of Arthritis Today
With a medical director now in post, and the first non-scientific chairman in the charity’s history, the Arthritis Research Campaign has just produced an exciting five-year strategic plan. New chairman of trustees Charles Maisey outlines his vision for arc’s future.
After ten years of involvement with the Arthritis Research Campaign - first as a member of the finance committee, then a trustee, deputy chairman and since last summer chairman of the trustees - Charles Maisey is ideally placed to offer an assessment of the charity’s achievements – and of its potential for expansion.
A former City investment manager who took over the arc reins from Professor Roger Sturrock, Mr Maisey is the first person to take on the charity’s top non-executive post without a scientific or medical background, something which he believes is significant.
“The fact that we now have a medical director makes it possible to have a non-medical chairman for the first time, and this signals a shift in focus more towards what patients would like to see,” he explains. “We need more work on things that will have a tangible patient benefit.”
He is keen to acknowledge arc’s past achievements such as establishing arthritis and rheumatology as an important area for research and treatment, and for building up an infrastructure of scientists and researchers, funded by loyal supporters. And, of course, for pioneering anti-TNF therapy for rheumatoid arthritis, probably the most significant development in arthritis research in the past half century.
“We have reached the position of being the fourth largest medical research charity in the country, but you cannot sit back on past achievement, and we have got to move forward,” he says.
"Step change"
Mr Maisey talks of arc being in a transitional phase, and in a period of “step change.” The pace of research will accelerate so that expenditure will double within the next seven years. The chairman believes that the combination of his appointment and that of Alan Silman as the charity’s first-ever medical director will lead to a more rapid translation of research into practical outcomes and treatment for the benefit of patients.
Certainly arc’s new research strategy for the next five years makes this intention quite plain. For the first time it will identify and prioritise research targets – rather than solely leaving it to researchers to pursue a particular research avenue. Although arc will continue to foster basic research, it aims to emphasise translational research as its major focus by 2012 and by that same year half or all its research will be directed, rather than reactive (as is currently the case).
In terms of the provision of education and information for patients, health professionals and medics (arc’s second major remit after research has always been education) arc recognises that the effective dissemination of information and research outcomes is vital. After all, there is little point in proving that a certain treatment or therapy is effective if this is not filtered down to clinics and GP practices at the sharp end.
“The vision is that arc becomes the authoritative voice in the area of musculoskeletal health and is the portal, or gateway, of choice for the provision of high quality information for everyone: patients, health professionals, supporters and scientists alike,” says the chairman.
UK's natural and leading authority
Accordingly, expenditure on educational activities, including self-help packages for people with arthritis to help them manage their symptoms, and more internet-based training packages for medics, will increase from five to ten per cent of total expenditure within five years. And over the next couple of years, at least two major reports, which have already been commissioned, will be produced on such popular topics as complementary therapies and arthritis, and obesity and arthritis.
Such activities will also help to raise the profile of arc and put arthritis and musculoskeletal conditions higher up the health agenda, as the charity cements its position as the UK’s natural and leading authority on all matters relating to arthritis.
As part of the shift in emphasis towards a more proactive research agenda, Mr Maisey points to Alan Silman’s plans to set up at least five specialist centres which will concentrate on specific research areas, for example, primary care. There are massive changes afoot in the way arthritis patients are treated by their local GP, and a research centre which aims to establish best practice and widely disseminate research outcomes will be vital as the NHS shifts more and more responsibility from hospital-based care towards primary care.
New networks of researchers
There are also plans to develop networks of clinical researchers covering the six major areas of musculoskeletal conditions, which will initiate new clinical trials, and collaborate more with the NHS and pharmaceutical companies.
As part of the plan to prioritise research, both prevalence of disease and severity will be taken into account by grant-making committees, and diseases affecting the joints will attract at least 60 per cent of funds.
Following on from the charity’s first-ever horizon-scanning meeting on osteoarthritis a year ago attended by leading experts in the field, a major new £2.2m genome screen, looking for genetic risk factors that predispose some people to develop osteoarthritis, has been approved and is about to start. This could have huge potential significance for both genetic testing and new treatments in the future. (See the forthcoming edition 139 of Arthritis Today for the full story).
With further plans to raise an extra £5m from new fundraising initiatives each year by 2012, and a new business department to support the growth in the charity, Charles Maisey admits that arc trustees are setting ambitious targets. But he believes that they are both attainable and necessary.
“These targets demonstrate a strong desire to take arc from being a successful medical research charity and turn it into a powerful big-hitter that has an ever-greater impact on the lives of people with arthritis,” he added.
