Patients or actors? The move away from using patients to educate

There is a tension between two different models of training. One prioritises the need to standardise, so that all learners see the same range and pattern of illnesses. The other emphasises the need to see real patients who react in an unstandardised way.

Using actual patients within an examination setting leads to the possibility that assessment may be unreliable, because different students will see different patients with a variety of symptoms, presentations and willingness to engage. One study compared standardised and real patients in terms of reliability as a test of clinical competence in a final-year qualifying undergraduate clinical examination (Reference Wass, Jones and Van der VleutenWass et al, 2001). The history-taking was observed uninterrupted, and the students were asked questions during a structured presentation. The conclusion was that the use of ‘long cases’ was neither more nor less reliable than using the objective standardised clinical examination (OSCE). Standardised simulated patients are now being used with increasing frequency to increase the reliability of examinations. In Part I of the examination to become a Member of the Royal College of Psychiatrists (MRCPsych), for example, the long case was replaced in 2002 by the OSCE. Similarly, at University College London (where we both teach medical students), 2003 was the last year in which patients participated in the final examinations; from this year onwards the examinations will use OSCEs. However, the decision that this is the only way to assess has not been made. The MRCPsych Part II examination will continue to use real patients for candidates to assess in the clinical section, and similarly students at UCL will continue to present long cases as part of their clinical assessment before the final examinations.

As we could not find any report about the opinion of patients participating in such examinations, we asked some of the patients taking part in the psychiatric long and short case assessments at UCL about their experiences (Box 1). These people felt that students needed to talk to real patients to develop their communication skills and understanding, as people’s illnesses might not conform exactly to the textbook description. Most of the patients enjoyed the experience of being involved in the examinations, and one said that she found it therapeutic. There was concern that it might be upsetting to be interviewed if you were acutely unwell; however, another patient specified (without it being part of the interview) that he had found it a positive experience to talk to students while he was unwell.

It could be argued that the way to achieve homogeneity of training is to use actors who will present the same symptoms and responses to every candidate, or to use real patients only when teaching very large groups. The proponents of learning through seeing real patients in everyday clinical situations argue that this method has high validity, because students are trained in and tested on a skill they require for real life.

The role of patients as teachers in medical education

Interviews with patients suggest that they would like more active involvement, particularly in improving students’ communication skills (Reference Evans and SeabrookEvans & Seabrook, 1994). Reference Spencer, Blackmore and HeardSpencer et al(2000) describe a framework for increasing patient involvement in specific educational situations: for example, users could act as questioners, asking the student about their condition, and the student could spend time researching these areas before reporting back to the patient. A systematic review of publications from 1970 to 2001 discussing the role of patients as active teachers identified only 23 articles (Reference Wykurz and KellyWykurz & Kelly, 2002). Only one of these articles was related to mental health, and this was also the only one co-authored by a caregiver or patient (Reference Butterworth and LivingstonButterworth & Livingston, 1999). Within the reported studies, teaching roles varied widely (Box 2). Some of the projects were designed to teach postgraduates, but most targeted undergraduates. A wide variety of topics were involved (Box 3). The patients were often given training for their role. All except one group found that teaching was a positive experience for both the teachers and the taught. Patients described themselves as experts in their own condition (Stacey & Spencer, 1999). They also found that they themselves had benefited (Box 4), through learning more about themselves, and through personal satisfaction, empowerment and increased confidence (Reference Butterworth and LivingstonButterworth & Livingston, 1999; Stacey & Spencer, 1999).

Another project, at Southampton University, involved medical students who together with nursing, social work, occupational therapy and physiotherapy students had joint monthly workshops with people caring for a terminally ill relative, or people who had been recently bereaved (Reference TurnerTurner, 2000). The carers’ role in these groups was to express their views of the value or otherwise of the services received, and what it was like to be a carer. Evaluations by both carers and students were positive. Carers highlighted the need for group reflection on each session after it had ended and requested more specific information about the sessions beforehand.

Teaching medical students

Patients’ attitudes to involvement in traditional teaching when students have clerked and observed psychiatric patients have been reported as very positive (Reference Evans and SeabrookEvans & Seabrook, 1994; Reference Coleman and MurrayColeman & Murray, 2002). Reference Walters, Buszewicz and RussellWalters et al(2003) conducted a questionnaire and in-depth interview study with patients, medical students and general practitioner tutors involved in a teaching programme. The general practitioner recruited patients who were currently well, and asked them to agree to a student interviewing them (usually in their own home), specifically for the patient to teach the student about psychiatric illness and the process of recovery. All groups interviewed suggested that there were direct benefits to the patients taking part, such as empowerment and raised self-esteem. A few patients found the interviews distressing, and research is needed to identify characteristics that would allow patients who might be distressed to be distinguished from those who would benefit.

This project is in line with the views of a patient activist who wrote to the BMJ to say that patients with mental illnesses are ideally suited to be teachers, as psychiatric diagnoses are based on what patients experience, as opposed to laboratory and radiological investigations (Reference NilNil, 2002). The writer suggested that as students meet only very unwell patients in hospital settings with, in particular, acute psychoses, they develop a pessimistic and unrealistic view of mental illness. If students met patients who had recovered, they would understand the disease better and this might encourage them to become psychiatrists. The present system of seeing extremely ill patients may be discouraging and lead to therapeutic nihilism.

In another project, which explored patients’ views of their involvement in teaching, psychiatric patients employed in a protected workshop were interviewed twice by two medical students (Reference Greenberg and CohenGreenberg & Cohen, 2003). The second interview sometimes took place at the patient’s home, and a carer was invited to attend where appropriate. The students presented their findings at a case conference, attended by the patient and (if the patient consented) the carer. After the presentation, both the patient and the student were asked what they thought of the interview and specifically how they felt about the patient being present at the case conference. Most comments from both patients and students were positive. Negative comments by students centred on the presence of the patient at the conference, which they felt was embarrassing or confusing for the patient. Some patients agreed with this, although many found the experience interesting and commented that it was not upsetting. Negative comments by the patients about the interviews most commonly reflected a cultural gap. The study took place in Israel, and there were, for example, male patients who felt uncomfortable being interviewed by women. In addition, many of the students were not dressed as modestly as ultra-orthodox tradition dictates. The authors suggested that more careful preparatory discussions with patients before the interviews could avoid such problems. We think that perhaps the students also needed more preparation.

A group of carers of people with dementia have participated in the formal lecture programme for undergraduate medical students at the Royal Free and University College Medical School since 1995 (Reference Butterworth and LivingstonButterworth & Livingston, 1999). After a lecture on dementia, one of the carers acts as a facilitator and questions three other carers about aspects of the caring role, and the successes and failures of services. The facilitator’s personal knowledge of the other carers makes it easier to ask personal and intimate questions than would be the case with an unfamiliar interviewer. The facilitator then asks the students if they have an experience in their own family of caring for someone with dementia, and the answer is often in the affirmative. The students rated the session highly on measures of clarity, interest and relevance. The authors, one of whom is a carer who has participated in the programme, comment that the carers were initially tentative when asked to participate, and felt unsure about whether they had anything useful to say. As well as being beneficial for the students, the sessions might have enabled carers to feel for the first time that their personal caring experiences have a general meaning and value; realising that they have something to contribute to training might in itself be therapeutic.

Training psychiatrists

Reference Faulkner and ThomasFaulkner & Thomas (2002) suggest that:

There are now many examples of high-quality user-led research (Reference Faulkner and ThomasFaulkner & Thomas, 2002; Reference Rose, Fleischmann and WykesRose et al, 2003). Two members of the Service Users Research Enterprise recently presented results of their descriptive systematic review of patients’ perceptions of electroconvulsive therapy (ECT) at the Royal College of Psychiatrists’ annual conference in 2003. This research had previously been published in the BMJ and influenced the National Institute for Clinical Excellence policy on ECT (Reference Rose, Fleischmann and WykesRose et al, 2003). This group of users has thus influenced guidelines and policy. The dissemination of user-led research findings through journal publications and presentations is an important way in which users can influence the training and continuing professional development of psychiatrists.

User groups are also becoming involved in the education of psychiatry trainees. Reference IkkosIkkos (2003) described a basic clinical interview skills workshop for new trainees, consisting of weekly sessions for 6 months, to which users have been contributing since 1999. The users lead sessions in which trainees are invited to consider what expectations patients might have of them, how patients might feel as they approach a psychiatric interview, and how the trainees’ feelings might affect their own conduct in the interview. The users also make active contributions to other sessions through observations and comments in discussions and role-play, although they do not take roles themselves.

Trainees were asked to complete a feedback questionnaire. Perceived benefits were felt to be increased empathy, as well as an appreciation that patients are able to play an active part in decision-making, and that they have active memories of their treatment during a psychotic episode. A number of students indicated that they would have liked the users to be involved in the role-play exercises, and Ikkos reports that the user group are currently piloting this. Some trainees, however, appeared to find the user participation threatening and insensitive to their own emotional needs, and to feel that the users involved emphasised their own agenda and forgot that the sessions were a training programme. Users involved gave persistently positive feedback about the sessions. Overall, the initiative was felt to be beneficial, particularly in helping the training scheme to meet the Royal College of Psychiatrists’ (2004) psychotherapy training guidelines relating to interview skills. Ikkos comments that the findings complement those of an earlier report that patients can successfully contribute to psychiatric training through lecturing on an MRCPsych course (Reference Crawford and DaviesCrawford & Davies, 1998).

Employing users as teachers

The entitlement of users who have teaching and research roles in the health service to receive the same pay, benefits and status as other mental health teachers has been highlighted (Reference Happell, Pinikahana and RoperHappell et al, 2002; Reference ColdhamColdham, 2003). We know of only two user academic teaching and research posts at UK universities: the first of these is at the Institute of Psychiatry, where teaching commitments include the MSc courses in health services research, community mental Health and social work. Sessions mainly focus on user involvement in evaluation and research work (Reference RoseRose, 2003). In the second post, a mental health user consultant has been appointed as a visiting lecturer to four universities (Reference ColdhamColdham, 2003).

A centre in Australia employs a ‘consumer academic’, a user with a remit including teaching postgraduate psychiatric nursing students. The views of 25 postgraduate nursing students were solicited on the first day of a course about the involvement of users in mental health services and, in particular, about the post of consumer academic (Reference Happell, Pinikahana and RoperHappell et al, 2002). Although those interviewed were generally supportive of the involvement of users in planning their own treatment and in the planning of mental health services, the majority of respondents disagreed that users should be involved in the planning and delivery of all staff education and professional development. The authors of the study argue that, although the value of increased user participation in provision of mental health services has been clearly demonstrated, education and training are needed if mental health professionals are to adapt to the changing role of the user and this more collaborative approach. We think that this may not be a justified conclusion, as the question specified the involvement of users and carers in all education and professional development. The respondents may be enthusiastic about user involvement but feel that it is not essential to have user involvement in every learning situation.

The use of patients as active teachers also raises issues of appropriate training and standards. Universities are now required to ensure that teaching is of an appropriate standard, that there is feedback from the students, which is acted upon, as well as peer review. There seems to be no literature on what is necessary to ensure that user and carer educators have an appropriate standard of objectivity and communication skills. It could perhaps be argued that this does not matter, and that because users are relating their own experiences, objectivity is less important. We do not agree that skill in either form or content is irrelevant. Clearly, all teachers have to be able to communicate or nothing is learned. If content is inaccurate, it can be misleading; if it is extremely negative, students may be left feeling hopeless rather than with increased sensitivity or understanding. The next stage in development of this form of teaching should be consideration of training and quality control. The user perspective is becoming increasingly important in approved social worker (ASW) training. Two survivors of the mental health system have written a guide for service users taking part in ASW training (Reference Hastings and Crepaz-KeayHastings & Crepaz-Keay, 1995). It gives advice to users about how to negotiate their role, how to plan sessions, and how to cope with difficult situations such as hostility or defensiveness from ASWs who might feel threatened by the user in an educating role. It also discusses the benefits and potential disadvantages of users revealing their personal histories in the sessions.

Mental health voluntary organisations employ users as trainers. One of these is DATA, a user organisation based in north-west England, which was established in 1988. This organisation has provided trainers for groups, including student nurses and social workers, on subjects such as user and carer involvement in services, the ethics of secure mental health services, mental health promotion, users and carers and the National Service Framework for Mental Health, and reform of the Mental Health Act. The organisation also took part in planning and staff training for a project at Ashworth High Security Hospital aimed at improving patient participation and involvement (A. Hughes, personal communication, 2003). The organisation Mind runs a range of courses, which in 2003 included ‘Making sense of voices’; targeted at psychiatrists, psychologists, community mental health workers and keyworkers, this focused on the experience of hearing voices from the viewpoint of ‘voice hearers’ (Mind, 2003).

A number of mental health organisations (e.g. Mind and DATA) run courses that equip users to become more involved in services, including the training of professionals in user issues. The NHS Executive Mental Health Task Force User Group (1994) has produced a training pack for service users working as trainers, speakers and workshop facilitators.

Although the National Service Framework for Mental Health states that health and social services should ‘promote mental health for all, working with individuals and communities’ (Department of Health, 1999), doubts have been expressed about how this could currently be managed by statutory services without further resources (Reference Deahl, Douglas and TurnerDeahl et al, 2000). User organisations have a major role in health promotion, and this includes running training courses for primary care staff, and for other workers outside mental health services who are likely to come into contact with people with mental health problems. Topics covered by these courses include listening and counselling skills for non-specialists, mental health issues relevant to the workplace, and mental health awareness (for further information go to http://www.sane.org.uk/SANE_Services/Training.htm). Mind runs courses about the Mental Health Act, targeted at advocates, voluntary sector advisers and lawyers with an interest in mental health issues (http://www.mind.org.uk/Information/Conference+and+training/).