The appointment of increasing numbers of lay people to health service bodies raises the question of what they are expected to contribute. A basic expectation, presumably, is that they will have experiences, ideas, values and norms different from those of healthcare professionals and health service managers.
In this respect, they can bring a wide range of perspectives to health service bodies.
1But they are often also expected to represent the perceptions and interests of patients and prospective patients.
That is a more specialised role than that of general lay person and as such it requires training. But such training is, as yet, scarce and usually limited to the concerns of the patient group that sponsors it.
2Some individuals appointed to health service bodies to speak for the interests of patients have trained themselves through experience and study of various sorts. Eclectic self-training characterises the early stages of any new social movement, and patient representation or healthcare consumerism is still a new movement.
But it is now possible to begin to identify what basic knowledge and skills are necessary to carry out the new roles. That identification must be done by members of the movement themselves. Training devised by other people will always be biased towards the assumptions and values of the trainers.
As a young movement, however, patient representation is still fragmented. So far it lacks the means to hold wide debates comprehensively across and between patient groups and people appointed to represent patients' interests. But some general points about training for patient representation can be made while we wait for the wider debate.
Much emphasis is usually put on the views of samples of patients. That is right. And if the patient representative is a patient, or former patient, they are expected to be in close touch with other similar patients. That, too, is right. But effective representation often calls for wider knowledge and a more theoretical approach. No health professional or manager representing the interests of their peers would confine their knowledge to one sub-group. Patient representation, too, has to broaden out, while enhancing its capacity to tap into very specific patient views and interests.
At least three areas of knowledge seem fundamental to the role of patient representation.
They are: first, close and sympathetic familiarity with a wide variety of patient groups' values and interests; second, understanding of the principles of patient representation or healthcare consumerism; and third, familiarity with the values and perceptions of healthcare professionals and managers.
Patient groups form their views from what patients tell them. Even patient support groups that regard themselves as non-political usually want to improve patients' experiences of healthcare.
3Single-issue campaign groups are more explicit about changing policies and practices.
Classic examples of healthcare improvements campaigned for by patient groups include unrestricted visiting of children in hospital by their parents, and allowing fathers to support mothers in childbirth.
Patient groups' criticisms of practices that were once taken for granted, but are no longer acceptable to patients, play a vital part in keeping healthcare in line with changing public knowledge and sensibilities.
Lay people who speak for patients' interests should keep in touch with many different groups.
They should read their journals and newsletters, look out for their views as reported in the media, go to their conferences, talk to their members.
Healthcare professionals and managers often criticise patient groups for being biased (that is, for having biases different from their own). But it is precisely those patient-side biases, experiences and definitions of high-quality treatment and care that those who speak for patients must understand.
Patient groups' views are not a substitute for patients' judgements of their experiences as elicited through surveys and other research. Good research will uncover new topics and issues - but research to rediscover repeatedly what is already known is a ploy to delay acting on well-established views.
Lay members of health service bodies in the past have been reluctant to read professional journals on health. Lay people's inhibitions about trespassing onto professional ground is always to the advantage of more powerful groups. Lay people connected with a service or institution who cannot discuss its work with sense and understanding limit severely their ability to make any independent scrutiny or contribution. Lay people who speak for patients' interests should scan the professional and managerial journals regularly.
People speaking for patients' interests have to be able to tell when professionals' or managers' interests are likely to conflict with the interests of patients.
4That is the single most important skill required of them. They must keep in touch with the professional and managerial sides of healthcare and understand what they are about.
Lay people must have some understanding of clinical and non-clinical matters if they are to add another perspective to them. How widely is stateof-the-art clinical practice for a particular disease or condition accessible to patients? What are the issues that professionals think controversial? What is, or probably would be, a patient-side perspective?
What are the issues that professionals find nonproblematic but that patients think controversial - or would if they knew about them? What are the trends in professional standards? Are they the same as the trends patients would like to see? Reading professional journals will not turn lay people into health professionals or managers. But wide reading will help them ask relevant questions and take part in informed debate.
Many new ideas and new standards that support patients' interests as patients define them are first discussed in professional journals. Professional policies and practices should be acceptable to both professionals and patients. Using professionals' own evidence and argument in support of such ideas and standards is often more effective in getting other professionals to accept them than using evidence and argument from patients and patient groups.
A number of principles from medical ethics, the rights movement and commercial consumerism underlie the positions of patient representation.
As these principles are generally accepted in western culture, they are not in theory controversial.Where they mainly break down is in their translation into action and detailed implementation.
Thus professionals usually offer information to patients - but often less fully and frankly than many patients want and expect. Managers may agree on sectorisation of mental health services, restricting GPs' and hence patients' choice of consultant psychiatrist. Patient groups think the current complaints procedures are unsatisfactory. Patient representation on many health service bodies is still tokenistic. And so on.
So lay people speaking for patients' interests need to be able to relate policies and practices to principles. Calling up the principles is also useful when lay people have to speak for patients' interests when there is little empirical evidence and no relevant patient group to consult. The principles give cohesion to the work of patient representatives.
The task for lay people representing patients' interests is complex. It requires lay people to draw on several different kinds of knowledge, which is sometimes difficult or expensive to find. It also requires skill and judgement in raising new issues and in putting forward argument and evidence to managers and health professionals who may be unaccustomed to working with lay people as equals.
But the current climate favours such work.
It is now up to patient groups and lay people appointed as patient representatives to devise and commission the training that will help patient representatives do the job for which they are appointed.
1 Hogg C, Williamson C. Whose Interests do Lay People Represent? Towards an understanding of the role of lay people as members of committees.Health Expectations 3 (forthcoming), March 2001.
2 Bradburn J, Fletcher G, Kennelly C.Voices in Action, Training and Support for Lay Representatives in the Health Service. London: College of Health, 1999.
3 Wood B. Patient Power? The politics of patients' associations in Britain and America. Buckingham: Open University Press, 2000.
4 Williamson C.Whose Standards? Consumer and professional standards in health care. Buckingham: Open University Press, 1992.
5 Annual Report.London: National Consumer Council, 1994.
6 Good Medical Practice. London: General Medical Council, 1995.