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J R Soc Med. 2001 August; 94(8): 375–377.
PMCID: PMC1281629

Involving patients and the public—is it worth the effort?

Ruth Chambers, DM FRCGP

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.

DEFINITIONS

  1. The definition used by the NHS R & D Standing Advisory Group on Consumer Involvement for patients and the public is a wide one. It was constructed with input from consumers and people representing consumers, health service personnel, academics, and others. Consumers are defined as ‘patients and potential patients, carers, organizations representing consumers’ interests, members of the public who are the targets of health promotion programmes and... [those individuals and groups who are]... exposed to potentially harmful circumstances, products or services'1.
  2. Next, to whom is the question being addressed? The effort expended will vary depending on whether we are considering that question from health professionals' or managers' perspectives, from an organizational viewpoint or that of the patient or citizen or public group taking part in the exercise.
  3. What does involve mean? This word is used by many in the NHS as an umbrella term for any of the following: ask for views, consult, participate, share decisions in partnership about planning and delivery of healthcare and services. It is variously applied to exercises with the local community or to engagement at an individual level that results in greater equality in decision-making in clinical management between the patients and the health professionals they are consulting. This equality of relationship is sometimes described as a state of ‘concordance’ where the patient is sufficiently well informed and respected to reach a negotiated agreement with the doctor, nurse, pharmacist or therapist. A contrasting situation is where a patient is in a relatively disempowered state, and the treating health professional expects ‘compliance’ with the prescribed regimen.
  4. And effort—what exactly is that? This will include the skills and resources necessary to undertake an involvement exercise in a meaningful way, from the staff's perspective and the patient's or general public's perspectives. The staff aspects will include:
    • Awareness of the importance of patient and public involvement; when and how it can be incorporated in their everyday work
    • Skills to organize an initiative, select the right method for the purpose, gather or supply good quality information, listen and respond to the feedback
    • A managerial overview—strategy, policies, programme planning, links with other organizations to reduce duplication and fill gaps, links across the other components of clinical governance, links with health needs, training of staff and patients/public, and the quality of the exercise.
    The resources will include the time and money spent on actually considering, planning, undertaking, analysing and disseminating, evaluating and re-evaluating, training and informing staff and patients/public. Then there are the costs of the venues, surveys and initiatives. Some examples of these expenses are citizens' juries costing up to £30 000, a health panel spanning a district which might cost around £6000 per year, or a postal survey of 250 people which could cost around £2000. There are opportunity costs too, since involvement and participation is time and energy consuming work2.
    The patients' aspects will include:
    • Spending time participating in a consultation or in any decision-making process, including time away from work or caring for dependents
    • Time to become familiar with the jargon and understanding the way the service operates, so as to participate usefully in prioritizing exercises; learning and practising these skills.
  5. Finally, is it worth it? The answer must depend on the topic, the need and the extent of the effort. If you are in an executive position, your job security probably depends on supporting or organizing user involvement and participation (for example, by implementing the NHS Plan or clinical governance, or responding to scrutiny by the Commission for Health Improvement). If you are a patient it might be worth the effort if you will reach a more informed choice in selecting alternative treatments at an individual level or have a better understanding of the issues leading to improved adherence to a prescribed regimen. If you are a doctor or nurse, the effort may be worth it, if the involvement exercise enables you as a person or a practice or department to identify patients' needs and change the service accordingly. That might result in health gains for the target patients, or less wastage of resources.

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:

  • Whether the purpose is clear
  • Whether there is a culture of listening to patients and the public and being responsive, so that the information arising from involvement will be acted upon rather than ignored
  • Whether there is an established systematic approach to gathering patients' and the public's views and incorporating the information into everyday practice and policy, rather than an occasional ad-hoc exercise
  • Whether the methods and resources needed to collect and process the information are commensurate with the importance of the issues being considered, and the potential health or other gains
  • How important it is to get a truly representative opinion or whether a small sample will be sufficient
  • Whether there is time built in for reflection: Box 1 illustrates the importance of this.

THE EVIDENCE

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:

  • New services are introduced that are unwanted or inconvenient for the target population
  • Health services that are wanted and needed by the general public are not provided at the right time or place
  • There is a lack of take-up if those for whom the services are available are unaware of the existence of the services or of the evidence that justifies their use
  • Health services are duplicated by various different healthcare providers
  • The priorities of the community and health service planners do not coincide.

RESISTANCE

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.

References

1. NHS Executive. Research: What's in it for Consumers? London: NHS Executive, 1998
2. Chambers R. Involving Patients and the Public. How to Do it Better. Oxford: Radcliffe Medical Press, 2000
3. Dolan P, Cookson R, Ferguson B. Effect of discussion and deliberation on the public's view of priority setting in healthcare: focus group study. BMJ 1999;318: 916-19 [PMC free article] [PubMed]
4. Gibson PG, Coughlan J, Wilson AJ, et al. Self-management education and regular practitioner review of adults with asthma. Cochrane Library, Issue 4 1999: 1-12

Articles from Journal of the Royal Society of Medicine are provided here courtesy of Royal Society of Medicine Press