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The demands for care at the end of life and palliation for chronic disease are increasing in the UK with the ageing of the population and the rising expectations of the citizens. In the National Health Service (NHS) palliative care was for a long time regarded as an optional extra, but it is now widely recognized as integral to health and social care. According to the National Cancer Plan, holistic patient-centred care should apply across all conditions and in all settings [www.doh.gov.uk/cancer/cancerplan.htm]. This same plan has also highlighted evidence that black and ethnic minority communities as well as socially deprived groups have poor access to palliative care, and that some of the services are culturally unsuitable or delivered in an insensitive way. The plan promises an extra £50 million in England to end inequalities in access to specialist palliative care and to enable the NHS to make a realistic contribution to the cost hospices incur in providing agreed levels of service. This unprecedented increase in funding is intended to improve cohesion between the efforts of the voluntary sector and the NHS.
In the research sector as in hospice care, a sizeable part of the funding comes from charities. What is the strategy of the NHS through its Research and Development programme? The overall aim is to create a knowledge-based health service in which clinical, managerial and policy decisions are based on sound information about research findings. Priorities for NHS research funding will clearly be influenced by the Government's special concerns, which at present include cancer, cardiovascular disease and mental health. The funded research ranges from clinical interventions to managerial issues including social anthropology— for example, to clarify why some services work and others do not. In addition, funds go to research on population and NHS need, with an important emphasis on social exclusion.
Researchers who are in receipt of NHS research funding have to submit their project details to the National Research Register, a searchable electronic listing available through the NHS R&D website [www.doh.gov.uk/research]. In December 2000 a search with the term ‘palliative’ yielded 309 ongoing or recently finished projects including three trials funded by the Medical Research Council, two systematic reviews and two reviews by the NHS Centre for Reviews and Dissemination. A further search under ‘HIV and AIDS’ produced 270 such projects including six trials funded by the Medical Research Council and fifteen systematic reviews. These findings point to considerable research activity in both spheres.
The NHS R&D Directorate is undertaking exploratory work to review evidence needs, with particular focus on cancer and cardiovascular disease. This started with reports from topic working groups, and it is noteworthy that the cancer working group highlighted the relationship between deprivation and poor outcomes, stating that effective intervention is critically dependent on an understanding of these relationships. Further research reviews in these areas are planned in the winter of 2001 with a view to funding work that will fill gaps in our evidence base.
In November 2000 the Government responded to a House of Commons Science and Technology Committee report on cancer research1, stating that it welcomed ‘initiatives to extend research on links between ethnicity, socio-economic conditions and cancer incidence and survival’2.
Clearly, therefore, palliative care, HIV and AIDS as well as social exclusion are increasingly regarded as priority subjects for research within the NHS, and a substantial body of work is underway and due to be reported. Palliative care research may not require much further pump-priming but is still a niche area that must be nurtured and protected. In at least one respect the HIV/AIDS movement has been a pioneer—namely, in developing the role of patients and carers (‘consumers’) in the research process. This is not just a matter of involving them in priority setting; consumers have also given much help in protocol development—is it feasible, will it work?—and the choice of outcome measures. In England, we are proud of our national NHS R&D Group on Consumer Involvement which has shown how constructive and helpful these partnerships can be. Clinicians and researchers are frequently surprised to find that the outcome measures they have planned for studies are not considered the important ones by patients and their communities. Such partnerships have also worked well for improving the dissemination and publication of research.