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Should patients and the public be involved in planning and delivery of healthcare and services; is it worth the effort? Faced with this question, most professionals feel frustrated that they cannot meet current demands and wary of asking patients what else they want. They do not appreciate the potential advantages of responsible involvement. The question cannot properly be answered without some clarifications.
Even with these definitions you still cannot answer the question about whether user involvement or participation is worthwhile because it is too wide. We should be more explicit since the ‘effort’ involved in asking a few patients their views concurrently with their using the Health Service is dwarfed by the effort of involving people not using the service, or the local population in general. To train service users so that they understand complex health issues and can share in informed decision-making at all levels, or to gather the views of people in hard-to-reach groups such as the homeless, is difficult and time-consuming. The overall effort includes processing and responding to patients' feedback and experiences, then implementing changes and re-evaluating the subsequent quality of healthcare.
So the answer to my question ‘Patient and public involvement—is it worth the effort?’ is ‘it depends’. It depends on:
Although there is not much formal evidence that user involvement is advantageous we would expect this to be so: responsiveness to people's perceived needs, values, beliefs and preferences should mean that healthcare and services are more relevant and there is less wastage of resources. Involvement of lay people in training those in the NHS should make staff more sensitive to people's individual needs and concerns. Involvement of the public in making decisions about allocating resources should result in their greater ‘ownership’ of decisions about the limitations to the NHS. What evidence there is, though, is mainly anecdotal. Here are some examples of positive outcomes arising from involvement or consultation exercises.
Box 1 Effect of discussion and deliberation on views of focus group participants (from Ref. 3)
Sixty patients from two urban general practices in North Yorkshire each attended two focus group meetings, two weeks apart. The participants' views about setting priorities in healthcare changed substantially between the beginning of the first meeting and the end of the second, after they had been given opportunities to discuss the issues and had had time for personal reflection. About half of the participants initially wanted to give lower priority to smokers, heavy drinkers and illicit drug users receiving healthcare, but by the end of the second meeting about one-third of these no longer wanted to discriminate against such people.
First, a national public consultation: in 1997 the Human Fertilization and Embryology Authority consulted the public and specialist fertility centres about the abolition of payments to egg and sperm donors. They consequently delayed for the foreseeable future their anticipated plan to ban payments, because of the counter-arguments put by the general public and fertility centres that such a ban would mean that sperm and egg donor supplies would substantially diminish.
Second, empowerment of individual patients so that they take more responsibility for their clinical condition: a systematic review of randomized controlled trials indicates that education to facilitate self-management of asthma in adults reduces hospital admissions, unscheduled visits to the doctor and days off work4.
Third, a local example: a patient participation group in a rural practice has worked with representatives of the practice team to improve coronary heart disease care. One result was that the local parish council devised country walks of varying distances, described in leaflets available in the practice's waiting room; the practice has arranged group walks for patients.
Fourth, younger user involvement: young people were randomly sampled from ten of the eighteen general practices in South Stoke Primary Care Group. They were sent a postal questionnaire asking them about their experiences of consulting at their GPs' surgeries and how services might be improved, especially with respect to sexual health services. Half of the 32 who replied agreed to come to a focus group, which was held at a local sports centre. In the event, 12 attended and gave detailed views about how access to primary care might be altered so that services were more convenient and less offputting for young people as a whole.
Because so little genuine involvement and consultation has been undertaken in the NHS the evidence in favour of this approach is sparse. More compelling is the evidence of harm when potential users are not consulted on planning or delivery of healthcare and services:
Although user involvement is central to many of the UK Governments' national planning documents for the health services, the reality is different. Health organizations hold meetings termed ‘public consultations’ where a few members of the public attend to hear about decisions that have really already been made. Strategic working parties offer rhetoric on user involvement and public consultation but absolve themselves from the effort with such riders as ‘I for one don't know anyone’, ‘they would be bored’, ‘they wouldn't know as much as we do about the issues’, or ‘we are all patients really’. Grassroots staff are still anxious that involvement of users will mean patients asking for more services or impossible changes.
If we are to appreciate the advantages of user involvement and participation we need to look outside the Health Service to other public service organizations that have more skills and experience in the matter. A recent postal survey looked at the extent to which various organizations encouraged young people to give their views or participate in decision making. The health sector was just as likely as the other sectors (education, local authorities, youth and community and voluntary) to encourage young people to give their views, but was much less likely to involve them in decision-making (Chambers R, Linnell S, unpublished). When looking at primary care in particular, eleven of the respondents from the twenty-eight general practices encouraged young people to give their views about the way services were run or provided; whereas all twentysix youth clubs and projects and all but one high school did so. Only six general practices involved young people in decision-making, compared with three-quarters or more of the youth clubs and high schools and two-thirds of voluntary groups. Similarly, general practices were significantly less likely to have made changes to policies or procedures as a direct result of young people's views or contributions.
So, is involvement of patients and the public worth the effort? In theory the answer is yes, and there are good examples from practice; but we still await the evidence.