An expert patient-led approach to learning and teaching: the case of physiotherapy

Abstract

With patient expertise being afforded greater legitimacy in healthcare provision, there is a strengthening case for involving patients more creatively in the education of healthcare professionals. This paper reports on the results of a small-scale educational research project designed to explore how third-year physiotherapy students experienced a teaching session on the subject of strokes, led by two expert patients, and what they learnt from it. Applying a qualitative methodology, six students were interviewed in depth about the experience. Four key pedagogic themes emerged from the analysis of the interview transcripts. The first related to the differences between the expert patients in terms of their backgrounds and their reactions to experiencing a stroke and of their respective contributions to the session. A second concerned the anxieties students felt in participating in a session of this kind, since there were various departures from the norm, and what they should take from it in terms of their learning. A third theme was uncertainty regarding the relationship between the presenters and students. The fourth theme was the impact on student learning given that it had not been a conventional session. Notwithstanding any misgivings the session helped to validate the contribution that those who have direct experience of a clinical condition can make to the education of healthcare professionals, particularly in the affective domain. In planning sessions of this kind it is recommended that presenters are chosen with a view to challenging stereotypes and that they are encouraged to tell their stories in an open and flexible manner, albeit within a framework of intended learning outcomes. Students need to approach the session with an open mind and, above all, tutors need to be prepared to take risks.

Introduction

With the increasing emphasis on patient-centredness in healthcare, a key concern for educationists is how best to incorporate this principle into student learning. While patients have traditionally played a part in the education of health professionals, they have tended to be passive and peripheral. However, the situation is changing and the case for involving them more creatively is increasingly being recognized. This is reflected in the burgeoning literature on ‘patients as teachers’, particularly in the context of medical education (Stacy & Spencer1999; Wykurz1999; Wykurz & Kelly2002; Jackson et al.2003).

The case is strengthened by the emerging concept of the ‘expert patient’ or the ‘involved patient’ (Shaw & Baker2004). Many “health professionals who undertake long-term follow up and care of people with … chronic diseases” often make the observation that “my patient understands their [sic] disease better than I do”. The expertise and experience of patients is seen as being an “untapped resource · which has largely been ignored in the past” (DoH2001, p. 5). Attitudes are changing and there is a growing appreciation that the patient is as much an expert as the professional, particularly with regard to the management of their condition on a day-to-day basis.

Table

Practice points

When employing expert patients to lead sessions in educational settings:

• choose them with a view to challenging stereotypes;

• make them aware of the intended learning outcomes while fostering spontaneity and ‘storytelling’;

• encourage the students to approach the session with an open mind;

• give priority to the affective domain; and

• be prepared to take risks.

In considering the implications of such developments for the education of health professionals various questions arise. For example, to what extent should the insights of expert patients be seen as a learning resource? Should expert patients act as tutors? If so, what are the most appropriate and effective means of enabling them to participate in the educational process? Questions of this kind serve as a backcloth to the innovation and related research reported in this paper.

The innovation concerns what can best be described as an ‘expert patient-led approach’ to learning and teaching in physiotherapy. It reflects the view that expert patients are well placed to contribute to the education of healthcare professionals and inject unique insights into the learning encounter.

The purpose of the paper is to:

• outline the main features of the innovation and the reasons for its introduction in 2000;

• explain and justify the qualitative methodology used to research how students experienced the innovation;

• report the findings; and

• make some recommendations based on these findings.

In pursuing these objectives, the authors have pooled their expertise in physiotherapy education and in pedagogy more generally.

The innovation

During their third year, physiotherapy undergraduates in the School of Health Professions and Rehabilitation Sciences at the University of Southampton can opt for a specialist unit, Physiotherapy Approaches to Neurology. One of the sessions is devoted to the clinical condition ‘stroke’ and it is to this that expert patients make a valuable contribution.

‘Life change’ serves as the theoretical framework for the session. Students are introduced to a ‘life threads’ model (Ellis-Hill1997), which provides them with insights into the way in which a stroke impacts upon individuals by damaging and/or breaking these threads. They also have an opportunity to consider how healthcare professionals support individuals in seeking to ‘re-thread’ their lives. The theory is based on the premise that we create a sense of ourselves and our lives by the stories we tell about ourselves (Sarbin1986). During the session two people who have experienced a stroke ‘tell their stories’. Of the two presenters one has a teaching background and he takes the lead. In recounting their experiences, the affective dimension is very much to the fore. This helps students confront emotional issues arising from their engagement with such patients and they are encouraged to participate throughout the session. As the innovation has evolved the learning outcomes have become more open ended and wide ranging. At the end of the session students identify three/four areas where they will reconsider their practice and share one of these with the group as a whole.

There are four main reasons for involving expert patients. First, it is relatively rare for undergraduate physiotherapists to have the opportunity of interacting with those in receipt of the services they provide outside clinical settings. Usually encounters occur during placement where certain roles and responsibilities are prescribed by the ‘socio-institutional’ situation in which it takes place. Thus, student learning is constrained and traditional modes of engagement with patients are very much to the fore. By taking them out of a clinical setting more open exchanges can occur.

Second, the innovation allows for any adverse comments to be related to the profession as a whole, rather than to individual physiotherapists. Thus, it is seen as complementing placement experiences, enabling students and patients to explore broader evaluative issues and collective concerns.

Third, the innovation was prompted by a desire to enhance students’ appreciation of the psychosocial aspects of healthcare. It has been suggested that physiotherapists tend to focus on the body/condition of the person, as opposed to the person who is living with the condition, and that this can lead to narrow views on treatment and options for rehabilitation (Ellis-Hill & Horn2000 p. 117). As Rsenik Mellion & Tovin observe: “Clinicians who value and appreciate patient individuality are able to garner more information from and about patients through attentive listening, trust building, and observation” (2002).

Last, the innovation is designed to incorporate the notions of concrete experience (feeling) and reflective observation (watching) from Kolb's learning styles model (1985) into the student learning experience. These complement active experimentation (doing), which is a key element of clinical placement.

Traditionally, the unit questionnaire has been the main method for evaluation. This has elicited some very positive comments, which highlight the perceived value of the innovation in enabling the students to explore the ‘human’ aspects of their professional role (see Table 1).

Table 1.  Evaluative feedback on the innovation

Fantastic opportunity to talk to patients who you’re not involved with and ask their opinions of treatment. Good to meet someone … who had no physical disability and no obvious problems. Great to hear how it affects their life and how much they knew about what was going on immediately after the stroke

V. good session—brilliant to hear patients’ perspective as easy to forget how they feel, but its key to being a good physio

Don’t usually get the opportunity to talk to patients—giving insight into what they are feeling

Real eye-opener, came away with lots of ideas on communicating with patients

Helps you remember that a patient is a person not just a stroke

Good use of ‘unravelling rope’

However, it is a relatively blunt instrument, which does not adequately capture the informal comments received by the unit leader. As part of her commitment to reflective practice, she felt that it would be negligent not to investigate further.

Methodology

In keeping with the exploratory nature of the research and a desire to gain an in-depth appreciation of the student perspective, a qualitative methodology was adopted (Holliday2002; Denzin & Lincoln2003).

The research questions were:

What do third-year physiotherapy students (i) experience and (ii) learn from an ‘expert patient as teacher’ session?

The objectives were to investigate the reported experiences of the students; to identify what students learnt from the session; and to highlight positive and negative aspects that could be used to inform the design of future sessions of this kind.

Semi-structured interviews were conducted with six of the 24 students who attended the session in 2004 and were willing to talk about their experiences. It had been expected that around 10 students would agree to participate and so it should be recognized that the participants were probably those who felt most positively about the session. Nonetheless, the issues that were highlighted by the respondents were so insightful and rich in detail that the researchers felt these should be shared. It was also felt that six interviewees would provide sufficient variability in terms of background factors that might influence their perceptions of the session, in particular age, gender, previous clinical experience of stroke/disability (e.g. from working as a healthcare assistant), the setting of their neurology placement and family or personal experience of stroke.

Full account was taken of ethical considerations. All students were fully briefed on the study and the nature of their involvement. An information sheet was given to them two weeks prior to the session. Those agreeing to be interviewed were asked to complete a response form and return it to the lead interviewer. All interviewees were required to sign a consent form. Clearance for undertaking the research was secured from the internal ethics committee of the school.

Interviews were carried out in private during university working hours and lasted for up to an hour. Every interview was audiotaped after having obtained the interviewee's permission. They were held during the three weeks following the session, while it was still relatively fresh in the interviewee's mind.

Interviews included questions covering students’ expectations, students’ experience during the session and their thoughts and feelings about the session; and what had been learnt. However, the emphasis was very much on generating a relatively free-flowing discussion and allowing the students to determine priorities as far as possible. The interviews were transcribed verbatim, with both the interviewers’ and interviewees’ comments being included. Each transcript was read line by line by research team members separately and items of interest were highlighted. Notated transcripts were then compared and contrasted to determine common themes and also to identify any differences amongst the respondents. As the transcripts were analysed by more than one of the researchers, alternative interpretations were identified and included in the analysis. Unit tutors, however, did not have access to the transcripts in order to maintain anonymity and confidentiality.

Findings

Brief details of the six interviewees are provided in Table 2.

Table 2.  Interviewees

No.	Age	Gender	Previous experience of working with stroke patients^a	Setting of neurology placement	Personal experience of stroke^b
1	20	Female	No	Outpatients	Yes
2	20	Female	No	Acute	No
3	20	Female	No	Rehabilitation unit	No
4	24	Female	Yes	Private rehabilitation unit	No
5	21	Female	No	Rehabilitation	No
6	33	Male	No	Acute	Yes

Notes: ^aPrior to joining course. ^bWith regard to family members or friends.

Although most interviewees were female, this accurately reflects the gender mix amongst physiotherapy students. However, females may have been happier to talk about their experiences, including the affective aspects, than males. Thus, this needs to be taken into account when reflecting on the findings.

Presenters

Prior to the session the students had not been provided with a great deal of information about the presenters, John and Ellen (pseudonyms), to avoid formation of preconceptions beyond their own understanding of stroke patients. Thus, what particularly impressed a number of the interviewees was the marked contrast between the two presenters. Although both had experienced strokes there were some very evident differences, such as age, gender and background, which were seen in a positive light by one of the interviewees:

I think it's quite good probably having the younger guy [John] as well as an older woman [Ellen] because they’re at different stages in life. (Interviewee 1/line 234)

Interestingly, John was initially mistaken for a carer or an external speaker:

I don’t think any of us thought he was a patient … I don’t know if he was a carer, well I think for me personally and I think for others as well, we sort of assumed he was just an external speaker maybe. (4/107)

This was because he was relatively young when he had his stroke and the indicators of his condition were not immediately apparent. As one interviewee observed:

We couldn’t see any physical limitations. (2/706)

Whereas:

[Ellen was noticed] more than him because she … was in a chair … so it was kind of that more typical stroke patient image. (2/68)

Variations in their approach were also much in evidence, with John having been a teacher being particularly noticeable:

He stood quite formally and taught us … he was really confident and he’d … obviously done it so many times before. (4/145)

While with Ellen:

… it was more relaxed … in a way, it wasn’t so much like a presentation … it was … more a conversation … rather than a structured … thing. (3/153)

A number of more subtle contrasts were, perhaps, of greater importance from a learning point of view. One of these related to their coping strategies. For John it had appeared to be more traumatic:

… he can’t see the funny side of things any more. (4/445)

While:

I think [Ellen] … was more accepting … she goes to a stroke group and I think she's made … a few friends from that … and, like, she can laugh. (4/475)

Another difference concerned the messages that each presenter wanted to get across:

it was a different perception I think of what they wanted us to know so … [John] knew that he wanted to tell us that we should treat our patients this way and communicate really well whereas … [Ellen] wanted us to know that she’d had friends in hospital and that was a good thing and it made her, like, it cheered her up at times when she had friends to talk to in hospital. (5/507)

That said, there were some similarities with both commenting about their time in hospital and what happened subsequently.

It was a very confusing stage for them … some doctors were saying one thing and a nurse was saying another and … you have the physio coming in as well and it's all lots of different faces, lots of different people. (5/143)

The long-term implications also came across:

… it brought home how much of a life-altering thing a stroke is and it's not just something that goes away when you go home after hospital. (2/679)

Both were keen to highlight the problems and issues for patients at the boundary between hospital and home.

Because the session was relatively free flowing with John and Ellen interacting with each other, some interviewees wondered what kind of briefing and/or preparation had taken place beforehand:

… the other thing you couldn’t work out was how much guidance they were given on what to say or whether it was just ‘talk about your experiences’. (1/70)

Underlying this preoccupation was the tendency for the students to be a little disconcerted and unsettled by the format of the session.

Students

Since the session was somewhat unusual:

I got a little bit confused about what … [the interviewees’] focus was and … what the … aims of the session were. (5/29)

However, another interpreted this in a positive way:

I didn’t really know what to expect … I just went in with an open mind. (6/330)

A related issue was that some interviewees expressed concern about how they should record the session for future reference. There were no handouts and note-taking was not seen as appropriate. Thus, some did not think they would remember very much. Indeed, a constant refrain of one interviewee was that she ‘could not remember anything’ (1/41). Paradoxically, however, it was very clear from the richness of the material in her interview transcript that she was able to recall far more than she realized.

As indicated earlier, at the end of the session the tutor suggested that the students record a few key points. However, one interviewee observed:

[although the tutor advised] … “write down a few things that you’ve got out of the session”, which was useful, but I think if they had a handout of just the main points that they covered … I think that would have been useful. (5/392)

Arguably, however, a handout might have defeated the object of the session by undermining the variety of ways in which students could engage with what they heard.

Interaction between presenters and students

As there were no firmly established ground rules governing the session this slightly unnerved at least one of the interviewees, as the following remarks testify:

I certainly found it quite difficult to find a question that was appropriate to ask. (5/190)

I felt I had to listen to them because obviously they’d taken their time … to come in and talk to us so if you’re sat there writing, it … feels like a bit of a barrier between you … and them whereas you feel like you really have to concentrate and listen to them and look as if you’re listening. (5/406)

As a result the students were more passive than might be felt desirable. One interviewee put a positive gloss on this:

I think we were just so intrigued and … happy to listen to what they had to say. (4/196)

While others commented that:

… it was a very relaxed session because you felt quite safe … and they weren’t asking questions … and just enjoyed … rather than [having] to think too much yourself …. (1/167)

… it is quite informal so it's sort of quite a nice relaxed atmosphere and you don’t realise what you’re … learning really or that you’re not having to think really hard or take on any new concepts so it's quite a nice easy session to be in. (4/610)

These observations suggest that for some students the session was perhaps too ‘comfortable’. However, there was clear evidence of a very powerful affective dynamic at work:

I think it was quite emotional just listening to how they dealt with it and how they realized they’d gone from one day being fully mobile and no problems and the next day everything changes completely … you always think ‘I wonder what I would be like in that position?’. (3/643)

And I think you could probably see that on quite a few people's faces … the whole fact of the actual experience of having a stroke and … then how unfair it is. (4/308)

Thus, students were challenged with regard to how they would cope with having a stroke themselves and notions of fairness in respect of health and ill health.

Most interviewees indicated that they appreciated the opportunity of seeing the activities of aspiring professionals like themselves from the patients’ perspective.

You don’t often get the opportunity to hear about treatment … from … [the patients’] point of view and you have no idea what it is like after a stroke … and try to work out what is going on and so it was good to get a patient perspective. (1/83)

Thus, the contribution of the presenters undoubtedly made an impression.

Impact on learning

Even though, or perhaps because, it had not been a conventional session and despite the uncertainties, the impact on student learning was considerable. While this might not be technical or even examinable knowledge, it should stand them in good stead as far as their future professional practice is concerned. As one interviewee indicated:

The amount you learn from these two patients is something that you can keep with you throughout your practice. (3/609)

While another commented:

… just lots of little stories that hopefully I will remember when I’m working … stories which were beautiful. (1/222/259)

Alongside these broader considerations, there were a number of more specific aspects of learning.

The first relates to the diversity and individuality of patients and their ‘personhood’. Although it is a truism to say that we are all unique, for professionals it is a valuable learning experience to be reminded of this. Thus, the differences between the presenters helped to underscore this almost subliminal message. As one interviewee put it:

… you have to always bear in mind that all your patients are so different. (3/514)

While another was particularly stuck by Ellen's happy disposition:

I think the biggest thing I took from her was the fact that she said “… if you’re happy before then you’ll likely to be happy after the stroke” and I thought … that's quite … a strong message to take away. (6/156)

A second aspect of learning concerned the fostering of a deeper appreciation of the psychosocial aspects of physiotherapy. As interviewees observed:

[I will] try and think a bit more about them or what is going through their head as well as what is going on in their body. (1/435)

I’ll just bear in mind … how … [John] and … [Ellen] both stressed how emotional they found the whole process—even time spent talking with your patient is treatment and that—just sort of try to listen to what their emotions are. (3/375)

A final aspect was the recognition that there are limits to professional practice. This manifested itself in comments such as:

I think that it's hard because … the health professionals can’t always provide the answers. (2/375)

It is clearly important for professionals to recognize where their competence ends and that of others begins and which questions and concerns are unanswerable in a definitive sense. Dealing with these situations in ways that do not undermine the confidence of patients is clearly a considerable challenge to which a session of this kind can make a modest contribution.

Recommendations

In reflecting on the efficacy of an expert patient-led approach to learning and teaching, it is important to consider the outcomes for which it is most, or possibly uniquely, suited. In the words of interviewees:

… if you’ve experienced something you are the best person … to tell someone else about it … it was, you know, a great opportunity to ask about things that they obviously wanted to talk about and … you do have to pick your patients really. (2/817)

… that was really interesting, thinking, seeing it through a patient's eyes. (3/108)

Thus, at the very least, a session of this kind can be used to validate inputs from those who have direct experience of the topic under consideration and may or may not be ‘professional’ lecturers. Indeed, as one interviewee observed:

I think looking at it from … [the patients’] perspective and listening to them about their experience was a different experience to … how a lecturer perceives stroke [patients]. (5/678)

What comes through very strongly is that there are insights that only someone who has directly experienced a particular condition can provide. This is not usually technical knowledge but the tacit knowledge which helps to create a more rounded picture:

I don’t think you could have them teaching you the factual information and that but in terms of the emotional side of it … they’re the only ones who can tell you and you’re not going to get that point of view from anyone else, so it was very beneficial. (1/319)

A comment like this also reinforces the need to remember that education is not purely about the cognitive domain but also incorporates the affective and adaptable occupational skills domains (Bligh et al.1999). Thus, in preparing for a session of this kind it is important to ensure that those involved appreciate the importance of a more rounded view of the educational process. In the context of a course where the sole emphasis is on cognition it is unlikely to be as successful.

Another area of recommendation concerns the relationship between such a session and clinical placements. They should be seen as complementary, but as one interviewee observed:

… we saw patients much further down the line than we ever do on placement. (3/202)

This enables students to see how the treatment they are being trained to provide fits into the broader picture. As the reactions to John reported earlier illustrate, there is also some merit in looking for at least one patient/presenter who does not fit into the stereotype usually associated with the clinical condition being considered.

Within regard to the setting of the session, one interviewee offered some very perceptive observations:

… if you asked these patients for the same sort of feedback in a hospital environment … you wouldn’t get anywhere near the same sort of response … I would imagine they’d probably be a lot more guarded and, you know, not as forthright with their … opinions and views … firstly because they’ve now had time to reflect … on what they’ve gone through and they’re no longer in a … hospital, you know, a sort of alien environment … [the university is] not … a normal environment but … I think it's a lot more relaxed than … you would be in a healthcare environment so I think that makes a difference. (6/303)

For the presenters, although an educational setting might be a little daunting especially if they do not have a background in teaching, it may be easier to speak more frankly about their healthcare experiences than in a clinical environment. Hence, as the interviewee suggested, they are likely to be more forthcoming, thereby making a greater contribution to student learning than might otherwise be the case.

Conclusion

At the heart of the innovation reported in this paper there is a potential paradox. On the one hand, a great deal of attention had been devoted to the planning of the session and the selection and briefing of the presenters. On the other, this did not manifest itself to many of the interviewees. Nonetheless, the session did result in a considerable amount of learning, some of which was unexpected in the eyes of the students. Indeed, it was the almost serendipitous nature of the learning that makes such sessions so exciting and rewarding.

Thus, when using the services of expert patients, it is important to ensure that they are well prepared and are familiar with the outcomes of the session, but not to the extent that spontaneity is lost. It is probably best to allow them free reign in recounting their experiences and to encourage students to approach the session with an open mind. While this might result in some negativity on their part, the message from the findings would seem to be ‘keep your nerve’, since the end, in terms of effective learning, seemingly justifies the means.

Additional information

Notes on contributors

Roger Ottewill

ROGER OTTEWILL is an educational researcher, who is currently engaged on a variety of projects designed to enhance the learning experience of students and encourage reflective practice on the part of their tutors. His particular interests include business education, quality assurance and enhancement processes, video streaming, values and the ‘hidden curriculum’ in higher education and citizenship education.

Sara Demain

SARA DEMAIN is a physiotherapy lecturer and teaches neurology to second- and third-year undergraduate students. Her educational interests focus on making neurology relevant for students and it was this, combined with her clinical interests in stroke and patient partnership, which encouraged her to plan, implement and evaluate the expert patient as teacher initiative within the neurology module. Her other research interests focus on clinical decision-making in stroke and the role of exercise schemes for stroke patients.

Caroline Ellis-Hill

CAROLINE ELLIS-HILL is an occupational therapist who has an interest in the psychological and social aspects of rehabilitation and acquired chronic disability. Her main research interest is viewing rehabilitation from a narrative perspective, considering the perspectives of people and their families following the acquisition of a chronic disability and exploring the influence of relationships that are formed within healthcare practice and education.

Corinne Hutt Greenyer

CORINNE HUTT GREENYER is a lecturer in occupational therapy. The main focus of her work is the education of undergraduate occupational therapy students, particularly in areas relating to mental health. She is a member of the British Association of Occupational Therapists.

Joanna Kileff

JOANNA KILEFF is a lecturer in physiotherapy and has a Master's degree in rehabilitation science. She is involved with teaching on the undergraduate and accelerated course, and particularly with organizing the neurology modules. She is interested in the role of the patient in the teaching environment.