What the public really, really wants

LONDON — Traditionally, the medical and scientific community in the UK kept a healthy distance between itself and the general public. Accountability was largely a foreign concept and the opinions and views of patients were mostly discounted. But in recent times there has been a small revolution in the way ordinary people are encouraged to express themselves on everything from the quality of National Health Service (NHS) care to the temperature and flavour of hospital food.New UK Government health institutions — such as the National Institute for Clinical Excellence and the Commission for Health Improvement — routinely consult with patient group representatives in a bid to ensure their policies and procedures reflect the concerns and wishes of the general public.And the boards of health authorities and primary care trusts - bodies charged with the day-to-day running of the health service - all have patient representatives to counter the balance of power that traditionally lay with managers and clinicians. But while patients now have more say then ever before in how the NHS is run, how important is it that they have the same influence over medical and scientific research?The issue has been brought to light by a Market & Opinion Research International (MORI) poll commissioned by the charity Action Research, designed to illustrate whether the principal beneficiaries of medical research agree with the direction and strategy it is taking.Face-to-face interviews were conducted with just over 2,000 adults aged over 15. They asked them to pick one of four areas — conditions affecting pregnancy and birth, childhood diseases, conditions affecting primarily adults or conditions linked to ageing — which they would most like to see the greatest medical advances in the next 50 years.Thirty seven per cent identified childhood diseases as the key area for research, 30% ageing, 20% adults and 7% pregnancy and birth.But the results came as something of a surprise to Action Research, which — in a press release announcing the results — expressed it's surprise that such a small proportion of interviewees thought pregnancy and childbirth was a high priority for research.This is an area that the charity feels is deserving of substantial research funding. Yet, as the poll revealed, the public doesn't agree.John Grounds, director of campaigns and communications at Action Research, said: "It comes as a real surprise that only 7% of the public wanted to see the greatest advances made into conditions relating to pregnancy and birth. "Research has proved that it is imperative to give children the best possible start in life to help avoid mental and health problems in later years. Advances resulting in methods preventing premature birth should play a major part in medical research in the 21st century. "As a charity whose work benefits all age groups, we are not suggesting that areas outside of pregnancy and birth conditions are not worthy of support. However, we believed the figure would be a lot higher."The charity estimates that premature birth alone costs the NHS £200 million a year and that many very premature babies are at higher risk of language and learning difficulties and behavioural problems. The question that the poll raises is whether funding allocations for research should really be dictated by public opinion or scientific validity — or both? "We conducted the poll because it's our 50th anniversary next year and we felt it was an appropriate time to get the public's views on what they feel should be funded and to see if they matched what's actually happening," said Grounds. "We were very surprised and it's clearly an issue that needs looking at. But we're not using the results to change our remit. The problem is the general public does not understand the relative importance of research in the area of pregnancy and childbirth. The majority of our research tends to be in that area or in childhood diseases. "The poll shows the level of communication between those who fund medical research and those who receive the benefits of it is not as good at is should be."According to Grounds, Action Research does not have among its trustees any members seconded specifically to represent the public. He said it is an issue the charity's trustees may decide to look at when they discuss the 'level of public understanding' on medical research.The disparity between research and public opinion is something that has been recognised by the Medical Research Council (MRC), which in April 2000 established it's own Consumer Liaison Group.The group is designed to advise the MRC on ways to promote consumer involvement in its activities and help it respond to people's interests and concerns about research. The 12 members of the group — including a retired engineer, a British Telecom management consultant and a clinical psychologist — decide what issues it looks at and how.They meet four or five times a year and have already been involved in steering the council's Population and Health Diversity Study. The group is also expected to contribute heavily to policies on sensitive consumer-related issues such as tissue banks, DNA collections and patient records and confidentiality.And one of its key tasks could be to come up with ways to get the message across to the general public on the findings of MRC clinical studies.Yet the biggest question arising from the Action Research MORI poll could be whether it really matters at all that the public's views on research are at odds with reality?It does matter, says John Grounds, for one very simple reason. "The end user does have a role to play — after all, we do invite them to take part in clinical trials on the drugs we are researching."

What the public really, really wants

The healthcare priorities expressed by the British public differ significantly from those of the biomedical community.

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