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For more information, go to www.arthritisresearchuk.org

People power

Published on 01 October 2008
Source: Arthritis Today

A panel of people reviewing documents

How do charities like the Arthritis Research UK decide what to fund, and what part – if any - does the so-called man in the street play in the decision-making process? Jane Tadman reports on a new initiative to involve non-scientific members of the public in the awarding of research grants.

Around the room a panel of people of various ages and backgrounds are engaged in a lively discussion over a grant application that has singularly failed to find favour with any of them.

Unlike all the rest of Arthritis Research UK’s committees, they are neither cutting edge scientists nor leading academic rheumatologists but their number includes two patients; a retired engineer and a safety manager, a GP with a special interest in musculoskeletal conditions, an orthopaedic surgeon and an NHS rheumatologist, none of whom are actively involved in research.

No-nonsense safety manager for a marine towage and salvage company Mark Ranson doesn’t mince his words over a grant application summary on rheumatoid arthritis, declaring: “This is absolute cobblers, harebrained. You solve pain and you solve everything else; you don’t fanny about with people’s egos.” This sort of comment would not go down very well at the more formal research sub-committees but Martin has had rheumatoid arthritis for years and knows what he is talking about.

Louise Warburton, the GP, agrees to an extent. “I thought it was rubbish, although it may be more relevant to people who have just been diagnosed.”

"A bit pink and fluffy"

Rheumatologist Robert Marshall administers the coup de grace: “It’s a bit pink and fluffy, rather woolly.” The group move on to the next grant, a piece of basic science investigating cartilage destruction in osteoarthritis, which despite its use of fairly dense, technical language and a string of rather confusing analogies, scores more highly among the panel.

Orthopaedic surgeon Tony Kochhar thinks that although the research may not come to anything, it’s something that Arthritis Research UK should invest in and represents good value for money. And despite patient Trevor Botterill’s rather cynical comment: “You get the impression of people sitting in darkened rooms in universities writing up questions for their students to do for a couple of years irrespective of what’s happening elsewhere,” the application elicits generally positive comments.

These grant applications were just two of 20 that the panel, called the USER group, had been convened to discuss in their first-ever meeting.

Alan SilmanThe USER group is the brainchild of Arthritis Research UK’s medical director Professor Alan Silman who wants to see a lot more stake-holder involvement in the grant-making process.

Prior to USER, researchers applying for grants to Arthritis Research UK filled in page after page of detailed, technical description about their project or programme, with a very short paragraph called a “lay summary” added in almost as an afterthought.

Often bland and uninformative, the lay summary could be anything from: “we are investigating a new molecule that might be important in the pathology of rheumatoid arthritis and could lead to new treatments for this devastating disorder,” to jargon used which assumes a detailed knowledge of the field, for example, “cell signaling”, “downstream events” and “cellular differentiation.”

Now all applicants have to make more of an effort to translate their research into plain English that can be understood by well-informed members of the public, filling a side of A4 with a much greater focus on stating how the aims and objectives of their proposed project will benefit patients either directly or potentially in the longer term by opening up new avenues of research.

Arthritis sufferers talking about the condition

Lay members not intimidated by professionals

It is these lay summaries which now go to the USER group, which, five times a year, will give its opinion, to be taken into consideration by the research funding committees, which then have the power to decide whether the grant is successful or not. Rather than looking at the nuts and bolts of methodologies of how a particular piece of research is to be performed, USER has a higher purpose – to think abut whether it is relevant, cost-effective and of benefit both to the aims of Arthritis Research UK and the end user, in other words, the patient.

At the first meeting of USER it was clear that not all the applicants for research funding had read or understood the brief – several of their summaries remained impenetrable and had been sent back for the applicants to have another attempt. Even at that stage, several members of the USER group members commented on the lack of structure of the lay summary, the fact that they were too waffly and too concerned with showing off. It also appeared that some applicants had put in a generic application that they had probably sent off to several funding bodies – with the odd reference to arthritis to make it appear relevant to Arthritis Research UK. However there were some shining examples of researchers who had successfully communicated very complex technical proposals into a format which was comprehensible to the group allowing it to make an informed judgement.

Professor Silman, who chaired the first USER group meeting, made it clear to the members that just because they may not be happy with the way the lay summary was written, it should not follow that the research the applicant was planning was not worthwhile, and the group should do everything they could to help the applicants.

As the meeting went on, several factors emerged. For one thing, the lay members were far from intimidated by the professionals’ views around the table. And contrary to what may have been expected, the clinical, more patient-orientated grants did not necessarily get scored higher because they were easier to understand than the more basic science summaries. Both the orthopaedic surgeon and the rheumatologist were most enthusiastic about those grant applications which promised the most obvious patient benefit. Everyone brought with them their own personal prejudices and areas of expertise, but no-one was interested in “research for research’s sake.” Sometimes, background information about a particular grant or institution was needed before the panel could make a properly informed decision, and resulted in them changing their previously made-up minds. At the same time the panel felt they didn’t want to know too much about the applicant or their track record because “a good idea is a good idea wherever it’s from.” And occasionally they were enthusiastic about a grant application because the title sounded like a good idea – for example, predicting patients who would do best from receiving anti-TNF therapy early – irrespective of the quality of the research the applicant was planning to carry out.

Huge enthusiasm

By the end of the meeting the panel had decided that the lay summary should be no more than 750 words long and slightly better structured for ease of explanation, but overall they were all hugely enthusiastic about the process and their input into it.

“It was better than I expected,” said Trevor Botterill. “I was nervous of being unable to understand the technical jargon but with a little bit of help and discussion you can understand what’s going on to make a reasonably balanced judgement.”

So what happens now? Members of the USER group will continue to convene (with their three other colleagues who were unable to make the first meeting) increasing their workload from 20 grants to 50, with their feedback passed on to the research funding committees.

Whether or how the USER group’s opinions make a difference to the final decisions taken remains to be evaluated. The system will be audited after a year to see if the USER group’s views are taken into account by the research committees who hold the purse strings. This is a very novel approach to obtaining a different view of the value of research proposals and if successful may be followed by other major research funders both in the UK and overseas. Watch this space!

For more information, go to www.arthritisresearchuk.org/arthritis-information or call 0300 790 0400 to order the complete printed booklet.
Arthritis Research UK fund research into the cause, treatment and cure of arthritis. You can support Arthritis Research UK by volunteering, donating or visiting our shops.