The rise of doctor-patient working groupsBMJ 1998; 317 doi: https://doi.org/10.1136/bmj.317.7169.1374 (Published 14 November 1998) Cite this as: BMJ 1998;317:1374
- Charlotte Williamson, chairwoman
- Accepted 26 July 1998
Doctors are increasingly taking the view that high standards of treatment and care come from marrying their perspectives to those of patients.1Setting up working groups of patients and doctors to explore similarities and differences in perspectives, values, and interests is one way of bringing about that marriage. The number of patient liaison groups in the medical royal colleges2 and the number of patient participation groups in general practice3 is increasing. Patients are being appointed to clinical audit groups,4 to research groups designing study protocols,5 and to groups developing clinical guidelines.6However, two questions arise: which patients should be appointed, and how should doctors judge the validity of what those who have been appointed say?
Questions may also arise about the selection and contribution of health professionals to working groups. However, the familiar structure and ideology of the medical professionmake it easier to respond to these types of questions. It seems natural to appoint doctors to a working group who have experience relevant to the group's task, who have knowledgeof leading edge theory and practice in their field, and who can sustain good working relationships with patients and their representatives. The equivalent attributes should be sought from those representing patients: experience, expertise, and the ability to sustain good working relationships with doctors. But the ideology and structure of the patients' side is not yet well understood and this may make it hard to decide who to appoint.
Doctors are increasingly recognising that working groups on qualitative issues in health care should include patients as members
Those patients appointed as members of working groups should be patients, members of organised groups of patients, or patients who act as advocates for patients; members should be appointed on the basis of their having the appropriate knowledge for the group's task
The working group should consist of equal numbers of patients and health professionals
Members should not be in clinical relationships with one another
The validity of patients' views and professional members' views should be judged by the same kinds of criteria
Structure and ideology
The basic structure of the patients' side is simple; its three categories of patients, patient groups, and patient advocates are defined according their experience and expertise (table).(table 7) The ideology of the patients' side is not yet fully codified but it centres on the idea that healthcare practices and the assumptions made by health professionals should meet patients' interests as defined by patients. Thus, the patients' side supports the ideology of doctors acting in patients' best interests when doctors'definitions are the same as patients', but it challenges doctors if interests are in conflict.8When there are conflicts doctors' commitment to the welfare of their patients often helpsthem to bridge differences through dialogue.9Patients, patient group members, and patient advocates each contribute different elements to the dialogue; individuals can belong to more than one category (box).
Patients are people in clinical relationships with doctors or other healthcare professionals (may also be called users or consumers)
Patient groups are organised groups consisting mainly of patients or former patients (may also be called user groups or consumer groups)
Patient advocates are people with a general knowledge of the views and interests of patients and patient groups (may also be called activists or healthcare consumerists)
Patient advocates and members of patient groups are sometimes called patient representatives
Patients witness the care and treatment they receive and experience their reactions to it. 1011 Their thoughts and feelings may signal disquiet with current standards of care or raise new issues. Almost all concerns that patient groups and patient advocates choose to address have come from the experiences of individual patients. However, most patients can reflect only on their own experience; an individual patient can seldom speak for other patients or represent their views. One patient cannot represent other patients in the sense of typifying them: there is no single “patient voice.”12 But the immediacy of patients' experiences puts them in the pre-eminent position to discuss those experiences.
For example, a patient who was a member of a royal college's patient liaison group described how the unpredictability of outpatient treatments—sometimes early in the morning, sometimes late in the afternoon—had created difficulties for her. A doctor who was a member of the group alerted colleagues to the erratic scheduling and this problem was corrected for future patients (P Wilkie, personal communication).
In this case and for cases that raise similar issues, one instance is as good as 20 or 200. Only when a patient's (or group's or advocate's) views would restrict other patients' choices is generalisation dangerous; in these cases, no number of such views, however high, should be acted on.
Organised groups of patients, the units of social and political action on the patients' side, have wider experience and more specialised knowledge than individual patients. Their members collect patients' accounts of their experiences and identify problems. Local groups compare local practice with standards developed by national professional organisations and with standards developed by patients'organisations. Patient groups review research and assess clinical best practice, disseminating their findings to their members.13Because of their collective knowledge and experience they can think about and discuss patients' interests more comprehensively, though not more intensely, than most individual patients.
Patient groups may be led by patients, dominated by health professionals, dominated by commercial interests, or may work in partnership with health professionals.14As a consequence, groups vary in how far they will go in challenging professional ideology and practice; they vary in how radical they are.15Radical groups that criticise ethical or clinical practice can evoke extreme defensiveness in doctors; if these groups can work to overcome this defensive reaction improvements in standards of care can result.
For example, Radiotherapy Action Group Exposure (RAGE) made public its concerns that patients had not been warned about the possible long term side effects of radiotherapy and that when those side effects appeared their relation to radiotherapy was sometimes denied. The group asked the Royal College of Radiologists to investigate the cause of the injuries. It helped the college by identifying group members who might have experienced side effects. Once a group member's consent was obtained the college reviewed the case and visited the centres that had treated the group member. The college then published a report singling out three high dose regimens that should only be used with caution. The report also made other recommendations for good practice.16 That report and the group's commentary on it17 were sent to all college members. So from harm came good through the clarity of purpose of one patient group and the responsiveness of one professional group.
Health professionals often regard the views of patient groups as distinctly different from those of individual patients and as less real.18But some things are judged bad (or good) by most patients who experience them. 1920 Patient groups know what those judgments are.
For example, the Patients Association and the Good Practice Campaign, a pressure group, expressed concern publicly about the removal of patients from general practitioners' lists. In response the Royal College of General Practitioners' patient liaison group drew up detailed guidelines for general practitioners on the removal of patients from practice lists.21The conflict between most general practitioners' wishes to retain the power to remove patients from their lists and most patients' wishes not to be removed without their agreement cannot be fully resolved. Nevertheless, setting out what steps doctors should take before removing patients from their lists went some way towards meeting the interests of both general practitioners and patients.
Sometimes health professionals accept that groups of patients do articulate the views of real patients but they believe that the groups come from too small a section of the patient population.18 Not all patients or former patients wish to or are able to organise themselves into groups.14This is not an argument for disregarding existing groups but rather one for finding out about the experiences and views of patients not represented by these groups. The validity of the views of patient groups, however, does not depend on the group's ability to represent the views of all patients. In trying to ensure that patients' interests are addressed groups generally promote ideas and standards that are enabling rather than restrictive. They cater both for those whose views are like their own and for those whose views are different.
One patient group worked to convince anaesthetists in their local hospital that parents should be allowed to be with their children during their child's recovery from general anaesthesia. The anaesthetists resisted the request, partly on the supposition that parents did not want to support their children. After the practice was changed to allow parents to be with their children, responses to questionnaires showed that parents valued the invitation to be with their child (R Holt, personal communication).
Some members of working groups should come from groups of patients who have expertise in a particular area, just as some of the doctors should be specialists in the relevant field. If there are no relevant organised patient groups, patient advocates can at least contribute general principles to the topic under discussion, search the literature, and suggest what type of further consultation or research may be needed.
Just as some patients move from being individual patients to being members of patient groups so some group members move on to become advocates for other groups or categories of patients. Sometimes, the experience of working on a community health council (a statutory body that presents the interests of all patients to local health authorities) helps this transition because, while on the council, members of local patient groups encounter issues of concern to patient groups other than their own and also gain familiarity with a range of healthcare matters.
Patient advocates are generalists whose experience and knowledge are more extensive than those of any single patient group. Patient advocates shape the principles and ideology of the patients' side and keep in touch with individual patients and groups. Some of the members appointed to national working groups should be patient advocates.
Leaflets for patients written by the Royal College of General Practitioners' patient liaison group cover many contentious issues such as the possibility of patients being removed from a general practitioner's list or the possibility that practice staff may see patients'confidential records.22 Patient advocates know that most patients are unaware of some of the routine practices of doctors and that this lack of knowledge may inadvertently mislead or distress them. For example, many patients do not expect doctors to withhold information from them. Thus, one leaflet advises that “all doctors should take care to tell you about your health, even if you don't ask them to. But doctors may omit to tell patients something if they think the anxiety could be harmful to their condition—so it is best to ask, to make sure you find out everything you want to know. All doctors should reply fully and truthfully to your questions.”23Bridging the gap between patients' and doctors' expectations is the key role of patient liaison groups; the ability to bridge this gap depends on patient advocates and doctors identifying and exploring their different expectations together.
Ground rules for groups at work
Discussing professional practice or quality of care raises strong feelings among both doctors and patients. The views of patient representatives and their evidence have sometimes been labelled as unrepresentative by health professionals and accordingly disregarded. 2425 Maintaining a balance between advocating for patients' interests so exhaustively that health professionals feel alienated or so feebly that the issues at stake are left obscure is like walking a tightrope.26Steps can be taken to foster the good feeling and mutual confidence to make this walk easier. Whenever possible working groups should have about equal numbers of representatives from the patients' side and the medical side. Doctors expect to have members with different kinds of expertise and views; this expectation should be extended to the patients and patient representatives who participate in working groups. A balanced group helps its members cover issues thoroughly and gauge how much support there is for what other members say. It makes it more likely that the group can handle conflicts without polarisation into factions of patients and professionals. Equality of numbers shows equality of esteem.
Whenever possible, doctors and patients, or patient representatives, who are members of working groups should not be, nor have been, in clinical relationships with one another. Otherwise each is liable to fear the other's retaliatory exposure of real or imaginary failings. This can easily be avoided by convening national or regional groups so that sensitive issues can be explored frankly and without risking the confidentiality of either patients or doctors.
Local groups' constraints on discussing secondary care can be lessened if members agree guidelines about confidentiality and about how evidence and opinion are presented. In primary care, patient participation groups face problems since patients and doctors are by definition from the same practice. That these groups tend to concentrate on uncontentious issues and practical support for the practice27 probably reflects these inherent difficulties. The establishment of patient participation groups should probably be complemented by the use of patient liaison groups composed of doctors and patients who cover an area wider than a single practice.
Once the appropriate doctors and patients, or patient representatives, have been selected for a working group, problems around the idea of representativeness fall into perspective. When doctors discuss issues of quality they do not adduce other doctors' views as their sole argument. They draw also on the literature, evidence from research, experience, government pronouncements, contractual obligations, medical ethics, and professional aspirations. Patient groups and patient advocates draw on the corresponding sources from the patients' side; they also cite professional views and clinical research. Some patient representatives also have training in analytical28 and presentational skills.29Representativeness comes from the ability of the patients who are members of a working group to explain patients' views and interests through argument and evidence. What is expected of doctors who are members of a working group should apply to every member of the working group.
Professionalism in medicine requires the delivery of quality health care 3031 ; groups of patients and their advocates seek this also.8 This shared commitment is the common ground for working together to improve all aspects of that quality.