Charity that begins at home ends in the lab

Universities get 20 per cent of their income from charitable organisations, writes Diana Garnham

It is estimated that more than 1,000 charitable organisations support some medical research in the United Kingdom. Of these, very few are both registered with the Charity Commission and have medical research as one of their principal activities. Yet member charities of the Association of Medical Research Charities are comprised only from this latter group. The AMRC is an umbrella body of 92 such organisations whose combined expenditure on UK medical research was Pounds 340 million in 1995/96, representing more than 80 per cent of the sector.

These charities have distinct profiles. They may focus on a single disease or a group of diseases, a range of related disorders or support medical research more generally. Most are small, spending less than Pounds 500,000 per annum. Only six spend more than Pounds 5 million per annum.

The largest charity, the Wellcome Trust, supports a wide range of biomedical sciences and alone accounts for more than a third of the AMRC charities, funding. Most charities raise their funds through donations from the general public, but 13 are endowed or will charities funded as a result of private or corporate philanthropy.

In addition to being registered with the Charity Commission and having medical research as a principal activity, it is a criterion for membership of AMRC that charities use peer review in the allocation of grants and awards for research.

The association believes that this is one of the most important steps it has taken towards greater effectiveness and accountability. The use of peer review has also been significant in achieving proper recognition from and the confidence of government, universities and the donor public for charity-funded medical research.

In the ten years since the AMRC was formally established it has regularly collected a variety of data from its member organisations and is now able to provide a broad picture of the charity sector's activities in UK medical research. In 1984/85 AMRC members spent Pounds 85 million on UK medical research. Today's figure of Pounds 340 million is in part due to the greater wealth of the Wellcome Trust but charities in all areas of medical research have grown.

Nevertheless, there has been a change in the balance of funding between those charities supported by public donation and the endowed charities: in 1984/85 the proportions were 76 per cent from fund-raising charities and 24 per cent from will and endowed charities: the balance is now 54 per cent and 46 per cent.

In the past ten years new charities have been established in genetics and neurosciences, reflecting, perhaps, the scientific opportunity in those fields. Although there are many cancer and leukaemia charities, their proportion of the overall funding has now dropped to 34 per cent.

Most charity funding for medical research supports work in universities - 74 per cent of all funding from AMRC charities is spent in this way (up from 58.5 per cent in 1990/91). Between 1992 and 1996, 107 different higher education institutions received funding from AMRC charities. The top quintile got 79 per cent of the funding with the top three institutions accounting for 31 per cent. The bottom quintile had less than 1 per cent.

The proportion of funding that supports work conducted in charities' independent units has remained steady at 16 per cent. In comparison, only 3 per cent supports research through the National Health Service, although much of the clinical work undertaken by university researchers will be in conjunction with NHS teaching hospitals. The increase in funding to universities reflects the broad base of university research relevant to medicine and their ability to attract resources from charities in almost every field.

However, there has been a significant change in the type of funding provided. The proportion of funding in project grants has dropped from 47 per cent in 1990/91 to a current level of 32 per cent, with the number of grants falling from 1,843 to 1,294. There has been steady growth in longer term funding streams with chairs and centre funding now accounting for 22 per cent and buildings and major equipment 14 per cent. For the first time in 1994/95 the AMRC has identified significant overseas funding at 1 per cent of the total. The balance in types of funding to individual institutions also shows wide variation: even in the top quintile some will receive almost 70 per cent of their charity funding in longer term support while others will receive only 30 per cent in this way.

For the time being, AMRC charities believe that the universities provide a good environment for medical research but such support from the sector should not be taken for granted and needs to be nurtured by government and universities if the relationship is to be maintained. It is not the principal purpose or role of medical research charities to support universities but rather to identify and fund research which fulfils their own objects, usually to cure, prevent or alleviate a particular condition.

One of the main concerns of the charity sector is that its support for medical research should be additional to that provided by government and not a substitute for it. Funding streams for university and NHS research must therefore be sufficiently transparent and accountable to enable charity trustees to be confident that the resources they provide are of additional benefit.

Although charities fund research in a variety of ways - supporting people, projects, programmes of work, buildings, equipment - they do so only for public benefit and when the particular research initiative or project becomes a shared objective and a partnership. In so doing they provide support for the wider medical science base through training, an increase in the total UK intellectual property and to improvements in health care. Charities now account for over 20 per cent of universities' overall income. Charities have responded generously both to the research opportunities and to the higher education institutions' need for longer term support, new buildings and major equipment. It is important now that the Dearing committee should consider how this relationship may best be maintained and further encouraged.

Diana Garnham is director of the Association of Medical Research Charities.