Developing the role of patients as teachers: literature review

Data sources

We systematically searched the databases AMED, British Education Index, CINAHL, Embase, ERIC, Medline, PsycINFO, Web of Science, and also Science Citation Index and Social Science Citation Index. Search terms were used on their own and in combination, using a wildcard (indicated by “$”): “patient$,” “health service user$,” “consumer$,” “teach$,” “educat$,” “learn$,” “instructor$,” “student$,” “undergraduate$,” “postgraduate$ medical,” “:participation,” “partner$,” “active partner$,” “medical education,” “medical school.”

Selection of studies

We selected research and evaluation studies plus descriptive accounts of programmes using patients as teachers from a search covering 1970 to October 2001 (for a summary of selection criteria and the reviews included see box on bmj.com). We included articles if patients and carers were “active” teachers, facilitating learning and assessing the acquisition of knowledge, skills, and attitudes associated with medical practice. We excluded programmes that asked “patients” to take the role of a patient or express symptoms of conditions they did not have, including many that used “standardised” and “simulated” patients.6 We also rejected articles, conference abstracts, letters, and discussion papers that were not written in English. The search generated 1848 hits, of which all but 100 were rejected as they did not meet the selection criteria. Full copies of these 100 items were acquired for further scrutiny. We applied the selection criteria independently and chose 29. The original 100 items were also read by two independent assessors, whose views on disputed papers led to a final selection of 23 studies for analysis.

Stage and subject of training

Nineteen programmes were undergraduate programmes and seven involved patients as teachers in postgraduate training. One study described a programme in continuing professional education to improve family practitioners' effectiveness,7 and in another, consumer organisations nominated non-medical examiners to assess doctors' communication skills for membership of the Royal New Zealand College of General Practitioners.8

Thirteen studies focused on physical examination skills, with most concentrating on musculoskeletal examination. Patients also taught pelvic examination skills and male genitorectal examination skills. 9 10 Other topics included children's developmental disabilities, dementia, and cancer.11^–13 Three programmes were devoted to communication skills, and two involved learning from patients in community settings. 11 14

Patients' roles and training

Patients' roles included giving a presentation, facilitating seminars, demonstrating to small groups, providing personal tuition, and giving feedback on performance (see box 1). Nineteen studies involved patients as assessors. The articles did not always make explicit the duration of learners' training in a specific topic or the proportion of time that patients were involved as teachers. Most initiatives seemed to involve patients in a discrete element of a programme lasting one or more sessions.

Eighteen articles described patients' training, which varied in style, duration, and intensity. Training could entail individual or group instruction, practice with students, use of audio or video tapes, and home study. Some patients teaching musculoskeletal examination skills received up to 50 hours of training, with additional home study.15 Patients teaching physical diagnosis skills for cardiovascular and pulmonary examinations were given an instructor's manual written in lay language.16 In one programme, arthritis educators had to attain 90% in a test to become an evaluator.17

Evaluation of patients' involvement

Most articles refer to learners' views about the patients' role in their training, but not all seek the patients' perspective on their experiences. Patients who were consulted referred to their experiences as positive and enjoyable. They appreciated sharing their knowledge, using their condition to facilitate learning, and contributing to doctors' training. Some patients felt empowered by their experience. 12 18 Others referred to their increased learning and the value of their training.

Reports of learners' experiences were all positive. Some preferred the teaching they received on specific topics from trained patients to the teaching received from doctors. Many commented on gaining new insights and confidence when practising examination skills on patients who gave constructive feedback. Such training increased their respect for patients and deepened understanding of the experience of disease.

Benefits and challenges

Articles emphasised the positive contribution of patients in a teaching role, with one reporting that lay examiners from consumer organisations could reliably assess the communication skills of general practitioners.8 Authors commented on learners' increased confidence and reduced anxiety when undertaking physical examinations. Several commented on the high quality of patients' teaching, with one article referring to patients working as instructors as “true colleagues in medical care.”19 Another study concluded that using patients as teachers improved local delivery of health care, changed professional behaviour, and was cost effective.7

Some articles indicated potential difficulties patients where were involved as teachers. Patients' emotional wellbeing and physical stamina were sometimes of concern where they might experience stress when sharing potentially painful issues or undergoing repeated examinations. This required monitoring to resolve difficulties that might lead to patients leaving the programme. The sustainability of reviewed programmes required resources to train patients, maintain their skills, and ensure that the faculty was committed to working in partnership with patients in their teaching role.14

Recruitment, remuneration, and status of patients

Motivation for recruiting patients as teachers and assessment of their value seemed to vary between programmes. Several recruited selectively to ensure that patients met specific criteria based on their teaching ability. Some viewed the programmes as a cheaper alternative to traditional methods,20 others valued the consumer perspective.8 Patients were recruited by doctors, from a standardised patients' pool, or for their professional (albeit not medical) background. Some received remuneration in the form of compensation whereas others received an hourly rate. Payment was associated with the status given to the patient-teacher, which could influence the programme's success. One article was coauthored by the chairperson of a carers' organisation, which implies a close partnership.13

Value of involving patients as teachers

This review shows that meeting real patients with firsthand experience of a condition, who have knowledge and teaching skills, offers learners important educational benefits (see box 2). This was particularly evident in physical examination teaching by trained patients. Learners found the experience less intimidating and developed confidence in examination skills. Through instruction and constructive feedback, the developing rapport between learners and patients seemed to improve the acquisition of physical examination and communication skills and respect for patients. Patients' teaching of musculoskeletal examination skills for arthritis was at least as good as that of consultants.

Most authors emphasised the positive contribution of patients as teachers. Although this may reflect publication bias,21 the authors provided explicit evidence of the patients' value. The disadvantages that emerged do not seem to negate the principle of involving patients as teachers but highlight the responsibilities of programme directors who choose to involve them. To benefit from being involved as teachers, patients must be adequately trained, supported, and remunerated.

The process of choosing patients for their teaching roles was not always clear in the articles; this raises the issue of how far the patients who were selected represent “communities” associated with the programmes. Teaching ability seemed to be an important criterion in the selection of suitable patients. The basis on which this is applied may, however, preclude able people unless recruitment processes are open and transparent, particularly when participation from diverse ethnic groups is sought.

This review has been restricted by being limited to English language articles. There may be other programmes where patients see themselves as active teachers, although this may not be explicit in the course design. In an article omitted from this review, patients were recruited as subjects for students' community projects but viewed themselves as teachers.22

Our review seems to be the first published review of patients as active teachers and indicates the diverse settings in which they have been engaged. Most of these have been in secondary rather than primary care, but there does not seem to be anything intrinsic to the programmes described that would preclude adopting them in training programmes in primary care.