Power to the patient

Published on 01 April 2011
Source: Arthritis Today
Carol Rhodes and Professor Pauline Ong

Three years ago Arthritis Research UK decided to invite patients and front-line clinicians to help make decisions about what research we should fund. Our primary care centre at Keele also uses arthritis patients in developing its research programme. Jane Tadman reports on the rise of patient power in influencing research.

At the very first meeting of Arthritis Research UK’s USER panel, set up to provide a voice for patients and non-researchers to have a greater say on the kind of research the charity funds, it was clear that the scientific community had yet to embrace the concept fully.

The grant application forms sent in to the charity by researchers were meant to have been written specifically for a lay audience – so no jargon, no technical language but clear, plain, straightforward English.


Grant applications were waffly and poorly constructed

However, many of the applications pored over by the members of USER at that meeting – a retired engineer, a safety manager, a GP, an orthopaedic surgeon and an NHS rheumatologist; none of them actively engaged in research – were impenetrable. As well as containing deeply scientific language, the forms the researchers submitted were often poorly constructed, waffly and too concerned with showing off.

Shoot forward three years, and things are looking up. After a shaky start Arthritis Research UK’s USER panel now plays an important role in making sure our research is relevant and patient-focused. Nine lay members and seven clinicians form the current panel, with regular recruitment adding new blood.

The process has been tightened up. Now USER looks at all project and programme grant applications in which the researcher has to provide a properly structured lay case for support, which compels them to answer very specific questions:

• What does the researcher want to find out?

• Why is this important?

• How will answering the question benefit people with arthritis and musculoskeletal disease?

“The language researchers use has to be accessible to people without a scientific background, and steering a path between the superficial or banal and a level of complexity that is beyond the USER panel is difficult,” acknowledges Dr Lisa Croucher, Arthritis Research UK research manager, who is responsible for USER’s activities and continuous development.

“However, there’s been a steady improvement in the quality of lay summaries,” says Dr Robert Marshall, one of USER’s rheumatologist members. “In the early days some of the submissions were frankly dreadful, reminding me of what my ‘A’ level chemistry teacher told me many years ago – there is no point being a brilliant scientist if you can’t communicate effectively! There is still a range in quality, but we’ve all been impressed by how the scientific community has risen to the occasion.”

If the researchers themselves are finding it easier to explain their research aims in user-friendly language, members of the USER panel have also grown in confidence. Members have to be comfortable with scientific ideas, confident enough to express their views in a group setting, and not have a personal agenda of any kind, despite having arthritis themselves. Says lay member David Chandler of his fellow USERs: “It was soon obvious to me that this was not a group that was going to be fooled by woolly applications or scientific jargon; they have real frontline insights into the conditions, whether as a patient or healthcare professional.”

Dr Robert MarshallEventually the USER panel’s aim will be to help to move the research agenda along a path set by both the charity’s goals and the aspirations, and needs of the individuals who support the charity and hope to benefit from its research. However, it’s probably still a little early to be able to accurately measure whether USER is helping to influence funding practice just yet.

Involving patients in research has been going on a lot longer at the Arthritis Research UK Primary Care Centre at Keele University. The centre started using patients’ expertise back in 2000, and has had a fully-functioning user research group for several years.

Members range from someone with a PhD to a manual worker who left school at 14, and Pauline Ong, professor of health services research at the centre admits it was very much a learning exercise in the early days, with familiar tales of scientific language baffling an unconfident lay public.


“What we say is taken on board; it’s not tokenism”

The user research group has now developed to the point where they now not only comment on research proposals, but are also involved in creating ideas for research projects. Two members of the group came up with the research question that formed the basis of a successful osteoarthritis programme grant for example – direct evidence of the value of patient involvement in research.

One recent development was the creation of a new post of a patient and public involvement coordinator. Carol Rhodes, a former accountant who has fibromyalgia, has produced a glossary of technical terms to help the user group members to understand scientific language, and she has been expanding the group further from a small group of eight people to a “virtual” group of 27, whose expertise can be called upon as and when required.

“Our users are now involved in more than 16 projects, in a more formalised way, at different stages of the research,” says Carol. “They are not just dipping their toe into the research projects: they are part of the project. We have a voice, and influence, and what we say is taken on board; it’s not tokenism.”

Professor Alan SilmanResearchers and patients at Keele have worked together to produce a guidebook for patients to use when they visit their GP with osteoarthritis. Based on their own experience of often getting short shrift from GPs, the guidebook is very tangible and practical, and also useful for professionals. It is being used in a forthcoming trial so is not yet available for wider use, but watch this space.

The Keele user group is now moving beyond simply influencing what research is funded to looking at the practicalities of making it happen in everyday clinical practice. Adds Pauline Ong: “Our lay members are getting more interested in outcomes; they want to know what the benefits of research will be to patients, and how best practice can be implemented.”

Which is something that patients, researchers – and Arthritis Research UK itself – certainly all have in common.

How do we fund our research?

Our funds are allocated to researchers on the basis of a rigorous peer review system, in effect, a competition judged by independent panels of senior academics from the UK and abroad, all experts in their particular field. Although not perfect, it’s regarded as the best way of ensuring the funding of research of the very highest quality.

Arthritis Research UK feels strongly that our supporters and stakeholders, who stand to benefit from our research, should have a greater say in how our resources are spent.

The USER panel, established in 2008, is advisory and feeds into the relevant scientific awarding committees. While scientific excellence always forms the bottom line for decision-making, USER now provides a very clear and strong steer, advising on the relevance of the research to the charity’s goals and the importance of patient benefit.

Read our full Representation in Research Funding report (PDF 1.67 MB) about the first two years of USER’s development.

The Arthritis Research UK USER panel is not currently looking for new members, but holds regular recruitment rounds.

Arthritis Research UK’s Epidemiology Unit research user group in Manchester is looking for new members. Contact Alison Littlewood at alison.littlewood-2@manchester.ac.uk