Published May 2002

Research Into Practice

Building on strength

The Arthritis Research Campaign (arc) is committed to curing arthritis. For more than sixty five years it has pursued this goal by inviting scientific proposals from the academic community and by first promoting, and then bolstering the specialty of rheumatology.

Over the years, there have been signal successes. Rheumatic fever (once a major child-killer) has been eradicated. Joint replacements, unknown until the '60s, have come to be seen as one of the major medical advances of the twentieth century. Improvements in pain control have benefited millions. New anti-TNF drugs are already set to transform the lives of those worst affected by rheumatoid arthritis. arc has created and provides core-funding for two dedicated and internationally renowned institutes.

It has itself funded eight Professorships of Rheumatology, as well as stimulating the appointment of over 50 other related Chairs. It funds 17 lecturers or senior lecturers concentrating on rheumatic diseases, 58 arc fellowships (recruiting the next generation of leaders), 23 academic centres supported by long-term programme or infrastructure grants and, at any one time, upwards of 390 research grants of one type or another.

arc endowments to universities stand at over £15 million, and annual grant expenditure now routinely amounts to nearly £20 million per year.

Greatly aided by the efforts and support of arc, the medical specialty of rheumatology has become firmly established. There are now 420 consultant rheumatologists working in 242 rheumatology departments.

arc is the nation's fourth largest medical research charity. In the past decade alone it has invested over £180 million in research into arthritis. This is five times greater than the amount of charitable funding available for diabetes, ten times greater than that for MS or asthma, and fifteen times the amount of charitable funding available for stroke.

Punching our weight?

Armed with the self-confidence this extraordinary record of achievement brings, arc recently undertook a wide-ranging review of its activities and their impact. Trustees of the charity, its staff, research workers, volunteer fundraisers, related organisations, donors and supporters and people who have arthritis were all consulted, with the aim of establishing how best to build on the successes of the first 65 years and, crucially, identifying any areas of shortcoming.

From these consultations, a number of issues emerged. Fewer than one in ten members of the public could identify arc as a charity dealing with arthritis.

arc is losing market share - its proportion of charitable funding for medical charities is declining.

There is a view that arc could have a greater impact on the lives of people who suffer with arthritis.

Supporters tend to see arc as 'a remote scientific body that does not do enough to help people with common diseases'.

Whilst the research that arc funds is of the highest scientific standard, the beneficial outcome for patients seems disproportionately low in relation to the size of investment.

In short there seems to be a gap between the aspirations of people affected by arthritis and the ability of science and academia to meet those aspirations.

There is a sense that, for academics, the results of arc funding have been tangible (Chairs, lectureships etc.), but for people with arthritis the results have been academic (abstract, impractical etc.).

This is reflected in the comparison between the world renown enjoyed by arc amongst the scientific community and the lamentably low awareness of its work amongst the public at large.

Essentially, the issue is one of balance. Research can fall into one of two categories - the pursuit of new knowledge, or the development of existing knowledge. Hitherto, arc has given primacy to the first of those categories, but has this been at the expense of the second, development and dissemination?

arc now plans to establish mechanisms to bridge this gap, and to stimulate and manage the exploitation of research and educational advances so that they translate into outcomes of practical benefit to people with arthritis. It will achieve this by putting in place a completely new system for evaluation and assessment of all the work it funds.

Output or outcome?

Historically, like most other medical research funders, arc's programme of research has been dictated by the topics and quality of application received. It has developed systems of adjudication which are extremely rigorous, but which, of necessity, reach funding decisions only on the basis of perceived potential. Whether or not that potential has been realised has traditionally been measured by whether the work achieved publication in peer-reviewed learned journals. This is known as research output.

Measurement of the volume of research output is an established method of evaluating the success of individuals and units, and is clearly effective in the context of assessing whether the sum of human knowledge has been advanced. As such it is highly appropriate in an academic setting.

But how effective is this system in translating greater knowledge into improved outcomes for people with arthritis? This remains reliant on individual scientists scrutinising the journals and their own interest, enthusiasms and curiosity being stimulated. There is no central impetus for progress, so the methodology which serves academia so well is flawed in the context of arc and its goals.

To overcome this problem, arc will instigate a system of rigorous retrospective evaluation on work which has already been completed, with a view to identifying opportunities for development, rather than relying on the curiosity or special interests of individual scientists.

arc will recruit a new advisory group to do this by identifying (and rating) those areas with the greatest potential to be developed for the specific benefit of people with arthritis.

Adding to the sum of human knowledge will be a beneficial by-product, but can not be a primary aim for a charity with a specific remit.

In other words arc will adjust the balance more towards research outcome than research output.

The new group (to be known as the development committee) will be made up of clinicians, clinician scientists, basic scientists and senior representatives of other vitally important disciplines such as orthopaedics, nursing, physiotherapy, podiatry etc. Importantly, it will also welcome advice and participation from people who have arthritis.

In conjunction with arc's existing scientific co-ordinating committee, it will:

  • Evaluate the success or otherwise of arc funded work
  • Identify future potential
  • Recommend initiatives to build on individual pieces of work
  • Encourage and co-ordinate collaboration in emerging areas of interest or progress
  • Establish priority areas

This marks a significant shift in strategy, away from what is known as 'response mode funding' and towards what might be described as 'dirigible funding' (where the programme of research is capable of being steered towards areas of priority).

All grant applicants in future will be required to give a specific indication of:-

  • The relevance to arthritis and associated conditions
  • Ways in which the success of the research could be measured

Education & Dissemination

arc recognises that there is little point in development without dissemination.

arc already has a remit to educate but there has been no unanimity of understanding of what constitutes 'education' for arc.

Some people have understood it to mean the education of the medical and health professionals and of people who have arthritis, while others have seen it as support of the academic infrastructure which will provide the bedrock of researchers in the future.

Academic development is an important strand of the work of arc, and its encouragement will continue. However, arc's education expenditure will be concentrated on:

  • Education of people affected by arthritis
  • Education of doctors
  • Education of allied health professionals
  • Education of medical students

Strategies will be developed for each of these areas, and greater resources will be made available.

It is important to stress that although these proposals are designed to identify priority areas for future research, arc will not, as a rule, earmark funds for particular topics; research proposals in all areas will compete for the funding available. When appropriate, high quality research in the areas arc may be promoting might be given priority in competition for funds, but research excellence and importance to the health of the people with arthritis will continue to be the primary considerations in funding decisions.

The decision making process will be as follows:

Implications of change

A strategic adjustment such as this has major implications for all parts of the organisation. In particular, it requires arc to re-examine its goals and activities in some quite specific areas of activity.

On education The new initiative will undoubtedly drive a re-assessment of arc's education policies.

On treatment It will draw attention to any shortcomings which may exist in the provision of therapies and services for people who have arthritis - and create the imperative for arc to campaign for these shortcomings to be addressed.

On funding It will require additional funding - which can only be generated if there is more public awareness and understanding of arthritis.

On leadership It will need arc to exhibit leadership and innovation in the field where before it has been content simply to provide financial support for potential leaders.

On governance It will require arc to examine its systems of governance to establish whether it has the range of skills necessary both at trustee and committee levels to fulfil its new purposes.

All of these topics have been addressed during the planning process.

Awareness and publicity

Its relative public anonymity seriously hampers arc in a number of ways. It limits our capability to get the right information to people who might need it. It makes it difficult to recruit new readers of our publications. It means that fundraisers are at a serious disadvantage compared to some more high-profile charities. It potentially undermines our efforts in campaigning and lobbying.

Facts and Figures Serious efforts must be made to remedy the situation. The first stage has been to gather robust statistics on incidence and prevalence of various forms of arthritis and their socio-economic cost, although this exercise has been hampered by a lack of available data. The aim will be for arc to become the pre-eminent source for arthritis information in the UK. This has been combined with a public information-gathering exercise to discover what people with arthritis want, and whether they can get it, leading to the publication of our 'Arthritis: The Big Picture' report, which will provide a benchmark, and which will be updated periodically.

Identity and public recognition Our old look is old fashioned. It doesn't tell people enough about us, it isn't very memorable and it doesn't give people the chance to get involved.

Couple this with our new commitment to putting our work into practice and the time is right to bring our look up-to-date. The result is the new arc logo.

At the same time we are introducing a new advertising campaign. It uses familiar everyday objects to drive home the day-to-day realities of living with arthritis.

Increased press coverage Researchers will be brought into closer contact with arc's press office, and greater stress will be placed on the necessity for a flow of newsworthy information to ensure regular media attention.

They will be required to keep volunteers and fundraisers informed about the nature and results of their research.

Advertising Advertising and advocacy campaigns will be tested, both to try and increase public awareness and to support campaigning activities.

Parliamentary work Advocacy in Parliament and elsewhere will be conducted in association with other relevant organisations.

Monitoring progress The success of these efforts will be measured. Market research will be conducted at the beginning and end of any major strand of activity. Press coverage will be closely monitored. Income trends, the quantity of legacies pledged, and the levels of public and corporate donations will all provide indicators.

The building of awareness takes time. A three to five year programme of activities is anticipated, with the target of doubling public awareness over that period.

Fundraising implications

The environment in which charities seek to raise funds is growing increasingly competitive. In the last decade, arc has consistently lost market share compared with other medical research charities.

In raising funds, arc is the fifth biggest investor, yet gains only the twelfth biggest return of medical research charities.

In these circumstances (and taking into account low public awareness levels) heavy investment in fundraising would be rash.

arc intends, however, to increase its net income by 10% annually. It will achieve this by a combination of new initiatives and cost control. This will include:

  • Active promotion of legacy giving which provides more than 70% of arc's income
  • The development of the nature and role of volunteer branches, particularly in the area of advocacy
  • The recruitment of new supporters, which will be concentrated on the workplace, with a new portfolio of ways to become involved with arc
  • arc shops will be required to meet strict minimum profit levels, and its trading company will be reorganised to shed the considerable year round costs it now carries
  • New support. In the three to five year period of awareness-raising, arc will concentrate on attracting involvement from the many people who have arthritis with whom we currently have no contact
  • Expanding marketing activity. As publicity generates wider awareness, arc will need to invest in the expertise to translate this into income generation through participation events and corporate opportunities. This will entail the engagement of suitably qualified staff and will require the opening of a dedicated marketing office

By 2007, it is projected that arc's net income will have risen to £29 million.

Evaluation processes

To meet public expectations and to encourage improvements in performance, arc will develop evaluation and review mechanisms for all activities in order to judge their success.

This will include not only research but also all other streams of activity - namely fundraising, publicity, advocacy, education and academic development.

The purpose of the evaluation mechanisms will be to help determine future priorities, to identify the potential for further work in any area, and to recommend next steps.

Governance

The development of a new strategic plan requires consideration of whether the governance structures of arc are appropriate to deliver the aims of the plan. The strategic review also raised some concerns about a perceived lack of transparency and objectivity in committee processes and these issues need to be resolved or rebutted.

A full review of the governance structures, including the role and composition of the trustees, the scientific coordinating committee and the other sub committees will be undertaken.

Collaboration

arc's record of achievement in the area of arthritis research is second to none.

It is the pre-eminent UK organisation in the field, and the research and the researchers it has funded, have had a global impact.

arc regards collaboration as one of the keys to future development. To this end, it will forge closer links with other relevant organisations, and will promote collaborations amongst the researchers it funds. arc will develop both UK and pan-European research networks, it will support international learning through sponsorship of meetings and it will promote a series of horizon scanning meetings on suitable topics.

  • arc's mission is to improve the lives of people with arthritis
  • The pursuit of new knowledge is fundamental to that aim
  • Practical application of existing knowledge needs increased emphasis
  • Innovation can be achieved without damaging a rational and well-developed status quo
  • Priority areas for research could be identified
  • Systematic reviews of results should be geared to improved outcomes
  • Education of medical and health professions and the general public should be given a higher priority
  • Effective dissemination of results is vital
  • arc must achieve a greater public profile