Health research needs the public's voice as much as it needs their money

8th March 2007
By Simon Denegri

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It is perhaps understandable that policy discussion of the role played by the ‘Third Sector’ focuses on its contribution in terms of providing health and social care. After all, the latest ‘mapping exercise’ by the Department of Health shows that some 35,000 organisations deliver services of one kind or another and that the market is expected to expand further over the next five years.

But there is another, often overlooked way, in which the sector adds massively to the economy but, more importantly, meets the needs of patients and the wider public: its role in advancing medical and health research.

Last year, member charities of the Association of Medical Research Charities (AMRC) spent over £700 million on research in the UK aimed at tackling diseases such as heart disease, cancer and diabetes, as well as rarer conditions like cystic fibrosis and motor neurone disease. That contribution — approximately one third of all public expenditure in the UK — is without parallel elsewhere in the world. Indeed, in terms of science and research policy it represents a unique national asset which others — including the US and Canada — look at with some envy. As they do our buoyant economy of public giving.

In 2005/6 medical research charities attracted 19 per cent of all charitable donations, up from 13 per cent the previous year and more than any other ‘cause.’ The proportion of donors giving to those charities rose from 34 per cent to 40 per cent.

And the charities they support are an invaluable and increasingly important route by which policy-makers and the research community can engage with the public — in terms of information and education, patient representation and campaigners. Indeed, charities have played a critical role in bringing the patient voice to bear positively on issues such as stem cell research, ‘hybrid embryos,’ and the use of animals in research. But if patients, the public and their representative organisations are to continue playing this role then there must be a quid pro quo move to involve them more meaningfully in the broader debate about research priorities and science strategy in the UK — not just where it suits the scientific establishment.

In AMRC’s view, Sir David Cooksey’s report on health research funding and in particular the establishment of the new Office for Strategic Coordination of Health Research (OSCHR) represents an important opportunity to move this issue forward.

The new body needs to demonstrate early signs of its intention to build a dialogue with charities as a step towards achieving its strategic priority of establishing a stronger partnership with the sector. In fact, it is difficult to see how it might set about its first ‘given’ task of mapping unmet need without some form of engagement with charities and patient groups.

And if there is perhaps one concern hovering over Cooksey for smaller charities it is that in the push for what might arguably be termed ‘greater impact through scale’, the research needs of rarer conditions and rarer diseases will be overlooked.

It is the eternal conundrum of priority setting and a difficult one to resolve. But it again points to the need for OSCHR to be open and transparent in its dealings across the board if it is to instil confidence among all its partners in the research community.

On the same theme, Cooksey made helpfully assertive noises about the need for greater engagement by the Commission for Health Improvement (CHI) and NICE in the research agenda that emerges from OSCHR.

That ‘fully engaged’ scenario, to coin Wanless, could be helpful in making more explicit the ‘research mission’ of the NHS but also in setting public expectations at the right level on the rationing decisions that need to be made against a background of finite resources. Without this we will continue to see public controversy over issues such as the use of patient data and decisions on which treatments are to be made available.

Another important signal of the government’s support for the sector’s role in health research will be its decision on the future growth of the Charity Research Support Fund (CRSF) in the current Comprehensive Spending Review.

The CRSF was established under the government’s ‘Science and Innovation Framework’ in 2004 and provides an additional element of QR funding to universities to cover the costs of research which the government has accepted charities should not be paying themselves.

Currently, 70 per cent of charity funding goes to support research in UK universities and CRSF is an important mechanism underpinning this partnership.

However, even in this, its first year of operation, it is clear the fund is coming under increasing pressure and that the government needs to revise its projections about the value of the fund going forward.

A settlement that allows for anticipated increases in funding from both AMRC and other charities, including major overseas charity funders, as well as increasing research costs — some 20 per cent over the last three years — is essential if the charity ‘£’ is not to become devalued in the eyes of universities.

Policy-makers have some clear opportunities in the months ahead to demonstrate the increasing value of the patient voice as well as their money in furthering health research in the UK.

Simon Denegri, Chief Executive, Association of Medical Research Charities.

Filed Under: NHS, Cooksey, Gene, Health Research
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