Preparing for patient-centred practice: developing the patient voice in health professional learning
Medical Education Unit, School of Medicine, Faculty of Medicine and Health, University of Leeds
Centre for the Development of Healthcare Policy and Practice, School of Healthcare, Faculty of Medicine and Health, University of Leeds
Paper presented at Professional Lifelong Learning: beyond reflective practice, a one-day conference held at Trinity and All Saints College, Leeds, 3 July 2006
The move from a paternalistic system that emphasised the autonomy and expertise of the professional to a more flexible and empowering patient-centered model of practice is central to understanding the current transformation of health care. The new healthcare paradigm raises many questions about the value of traditional approaches to professional learning that are in tune with the theme of the conference. Being a reflective practitioner is no longer enough to support new roles and relationships between professionals and the communities they serve.
The paper will explore how we might refine and supplement reflective models with theoretical approaches to highlight the value of participatory processes that put the patient at the center of learning and practice. In particular we will apply the concept of the ‘deliberative practitioner’, based in planning theory and addressing the social and political processes that shape participation (Forester, 1999), to explore how health professionals may acquire skills to engage with patients as equals. We will also use the concept of the Resourceful Patient (Gray, 2002) as a model that captures the new healthcare paradigm. This new paradigm requires a shift in perception for practitioners about their own role and that of the patient. Traditional medical and nursing practice relies largely on a deficit model of the vulnerable patient who looks to the professional for support, leadership and decisions. Deficit models can lead to resistance to listening and engaging with the patient’s view, as the responsibility feels overwhelming. The paper will highlight how alternative models taken from community development approaches (Kretzmann and McKnight, 1993) emphasise the capacities and expertise of patients who have their own internal and community resources and who can support professionals to be more aware of, and comfortable with, the value of sharing responsibility and power.
The authors will draw on their knowledge and experience of bringing patient voices into health professional education. Providing opportunities for health professionals to engage in learning with individuals who bring a patient perspective can be a powerful way of supporting professionals to be more patient-centred in their practice and move beyond the limitations of reflective practice. Becoming involved in professional education can also have a significant impact on individuals who bring a patient voice to support learning. Bringing patient voices into professional education facilitates mutual learning and the ‘success’ of this approach should not only be measured in terms of changes to professional practice but also embrace health in its widest sense.
….. The real problem has been to achieve care systems that promote rather than impede sustained growth of these relationships, which develop naturally in consultations between equals.’
‘As a group, caring professionals have a long way to go before their relationships with patients always reach the quality they would like to receive when they themselves need care. Viewed not as consumers but as fellow-workers in production of health, patients also have much to learn. When these two groups bring their skills together, both learn from each other to become more tolerant, thoughtful, effective, better informed, and therefore more open to doubt
(Julian Tudor Hart, 2006)
‘If patients and health professionals talk to each other, we can improve our relationship and we as patients really become partners in our own health care programme.’
(Leeds University Patient as Teachers team member, 2006)
The move from a paternalistic system that emphasised the autonomy and expertise of the professional towards a more flexible and empowering model of practice is central to understanding the current transformations of health care. This new paradigm incorporates many elements, including notions of citizenship, choice and co-production (Coulter 2002, Cottam and Leadbeater 2004) which emphasise the quality of the relationship between professionals and active and empowered patients. What we are witnessing are radical shifts in the distribution of power. More recent models of practice recognise and value the experience, skills and knowledge of patients and how these can help professionals develop their practice. This raises questions about traditional approaches to professional learning that are in tune with the theme of the conference: ‘Professional lifelong learning: beyond reflective practice’.
Our paper will explore and describe our experiences and understanding of the implications of this shifting terrain for professional lifelong learning. In particular, we will focus on the changing nature of the relationships between professionals and patients. We will look at theories and models of learning that help us to understand more about how professionals and patients can be encouraged to enter into active and equal relationships. The authors of the paper write as collaborators in building and evaluating ethical, effective ways of bringing patient voices(1) into professional learning. This experience will inform the content of the paper. One of us, a former mental health nurse who studied professional power, now leads research and development programmes in policy and practice development. The other was a community development worker who moved from using drama in communities to developing communication in medicine.
Providing opportunities of engagement in learning with patients is a powerful way of supporting professionals to be more patient-centred in their practice. Becoming involved in professional education also has a significant impact for the people who bring patient and community experience to support this learning. Enlisting patient voices has facilitated a model of openness to mutual learning and active engagement, required to develop and sustain the kind of relationships between professionals and patients that will support 21st century healthcare.
Learning in context: towards co-production
In this section, we outline how some of the roles and relationships in healthcare have evolved, in order to illustrate the complex nature of the challenge for professional learning.
The ‘sick’ patient and the consultation
In the early decades of the NHS, the understanding of the relationship between health professionals and patients was based on a straightforwardly paternalistic model. Patients were cast in a passive role, the grateful, uncomplaining recipients of the benign and benevolent ‘gift’ of state-funded health care, in a system characterised by the almost unbridled power of the professions (Klein 2001, Salter 2004). The subordinate role of the patient was captured at the time by Talcott Parsons’ conceptualisation of the sick role. Doctors are seen as rightly controlling access to the label ‘sick’. The role of the patient is purely passive, to try to get well and comply with the medical regime, prescribed and accepted without question or debate (Parsons 1951).
In this formulation, the consultation between patient and doctors (particularly GPs as gatekeepers to other services) assumed a very privileged place in the health care system. It became the focal point for the development of a new area of research and medical education involving many disciplines, analysing and aiming to improve the doctor/patient encounter (Balint 1957, Stoekle 1987). This has included juxtaposing ‘doctor-centred’ and ‘patient-centred’ styles of consulting and widening the tasks of the consultation to include ‘bio-psycho-social’ matters. Broadening the ‘medical gaze’ to include wider aspects of patients’ lives in a doctor-directed framework, however, seems to have had variable impact on preparing doctors to be more patient-centred (Campion et al 2002). Further approaches to changing consultations have encompassed the need to share understanding and decisions (Tuckett et al 1985, Elwyn et al 1999) and this has also proved very challenging (Pollock 2005). While there have been successful moves to incorporate these approaches in medical education (Morris 1999, Morris et al 1998), doctors in practice still feel unprepared for these additions to their clinical method (Morris et al 2001). They feel burdened by what they perceive as extra responsibilities. A helpful model is one that argues for the notion of ‘joint enquiry’ (Steinberg 2005) where patient and professional engage in the consultation as equals. This sharing of authority allows the fuller contribution of the patient and an appropriate sharing of the burden of care.
New models of active and equal consultations between patients and professionals challenge education providers to re-think traditional learning approaches. The provision of opportunities for health professionals to experience a joint enquiry approach in a safe learning environment may help to build the confidence required to develop new approaches in clinical practice. Bringing patient voices to professional learning supports this movement away from traditional models (Vancouver conference reports 2005, Morris 2005, O’Neill et al 2006), as we will describe in this paper. The role of the patient in learning has been developing over many years (Wykurz and Kelly 2002). However, many traditional approaches to learning that have involved patients have mirrored the same kind of relationships found in practice. Where patients were brought into the classroom, or involved in bedside teaching, this was often as raw material, an audio visual aid, rather than as a skilled and knowledgeable contributor, that is, a co-teacher.
The changing role of the patient
A further challenge for professional learning is the changing pattern of morbidity. The predominant disease pattern in England, and most other developed countries, is one of complex and continuing illness, rather than acute disease. In Britain alone, 17.5 million people live with a long-term condition. Professional and popular cultures tend to prioritise acute care that provides opportunities to portray professionals in heroic roles. Chronic problems require continuity and emphasise the importance of active relationships and working with the expertise and knowledge of patients.
In the UK, the Experts Patient Programme has become mainstream policy in the NHS (Department of Health 2001). This educational programme for patients, delivered by volunteers who themselves have a long-term condition, is based on evidence about the positive impact of peer-support and education in supporting self-management. However, the evidence about professional reactions to the idea of the expert patient is that they are not always supportive. Professional resistance to the idea of patient expertise is widespread in the literature and is seen as a significant barrier to patient-centred practice. Many professional views are based on untested assumptions that, not only will patients make bad decisions about treatment or care routines, but also that, in some way, the flood-gates of relentless demand will open. A poll in 2003 found that 76% of pharmacists, 63% of doctors and 48% of nurses thought better-informed patients would take up more of their time, be more demanding and be harder to deal with (Tudor Hart 2006). In reality, the evidence shows that more informed patients may reduce, rather than increase, demand (Pollock 2005, Coulter 2006.)
In addition, cost-containment pressures mean that governments and health service leaders are trying to renegotiate professional and patient roles (World Health Organisation 2005). These moves threaten professional status and values. In this context, the need to maintain professional identities can limit professionals’ capacity to share understanding and power with patients (Flynn and Britten 2006). Learning opportunities for professionals with Expert Patients can help professionals discover and appreciate how patients can contribute to improved health outcomes, while the professional’s effectiveness is also increased (Morris and Trafford 2004). At the same time, patients who get involved in professional learning develop new insights into the world of the health professional. As Hart argues (2006), for patients to develop their full potential as co-producers of health ‘trusting relationships have to be rebuilt on a new basis, not on faith or deference, but on evidence’.
Living with complexity
People are looking for different kinds of relationships with health professionals. In general, there is still a high regard for health professionals and most patients are very appreciative of care they receive. The evidence is also that many people want more involvement in decision- making, more information and more opportunity to express preferences and influence decisions about their care (Picker 2005), whilst illness can make people more vulnerable and dependent. Lupton argues ‘the privileged representation of the patient as a reflexive, autonomous consumer simply fails to recognise the often unconscious, unarticulated dependence that patients may have on doctors’ (Lupton 1997 in Picker 2006). Salter (2004) argues that, despite the many social factors that may be leading to a re-ordering of the doctor-patient relationship, including the decline in deference and the advent of the knowledge society, there are more continuities than changes. Instead of relying on simple dichotomies, paternalism versus empowerment, autonomous versus shared decision-making, he emphasises the complexity and constantly shifting nature of the relationship between professionals and patients. Above all, he argues that more account should be taken of the emotional domain of both sides of the relationship. As one consumer advocate points out: ‘the reality for most patients is not that we want to be in control of decision-making. Maybe we just don’t want to feel like everything is out of our control’.
It can be argued that a similar need to be in control of the disorder of illness and disease is what can keep professionals stuck in paternalistic mode. The challenges of GP consultations are as much about what is not within a purely medical remit – the everyday miseries and illness-causing factors of people’s lives, particularly in deprived areas. For example, people living near the car works at Longbridge, in the West Midlands, UK, already live shorter lives than people in richer, leafier, nearby boroughs and are likely to live even less long now that the works has been closed down (BBC Radio 4 2006). Medical training has not prepared today’s GPs to get to grips appropriately with these potentially overwhelming factors, as Cecil Helman describes in his latest anthropological work about his experiences as a West Midlands GP (Helman 2006). Because a broader ‘psycho-social’ model for exploring patients’ problems may yet be learned and applied in an essentially doctor-directed framework, GPs approaching such aspects of patients’ problems often balk at the task (Morris et al 2001). Some doctors and nurses seem to feel that they should know more than their patients, even about what to do about the daily realities of their (the patients’) lives. This is the ‘Pandora’s Box’ that not listening to patients helps contain: pain is uncomfortable to hear, but pain that you feel unable to help, when you think perhaps you should, may be impossible to hear.
Steinberg (2005) argues for a different style of conversation between professionals and patients, alongside the traditional clinical consultation. In this, professionals and patients ‘undertake joint learning and teaching as equals’. Launer (2002) describes this as curious questioning to explore the wider world of the patient, in which the professional has no special expertise. Such an approach to sharing authority can help professionals listen.
The ‘resourceful’ patient and the consultation
For this to work, the patient has to be conceived differently. Muir Gray (2002) describes the ‘resourceful patient’ as competent and responsible. In this scheme, the priority is to ensure resources are made available to help patients develop their capacities for self-care and independence, rather than investing further in educating professionals. Muir Gray’s emphasis on how the patient’s role needs to change shifts assumptions that only the clinician is competent and must bear all responsibility for decision-making and the organisation of care.
One criticism levelled at this idea is that it is appropriate for only some, less vulnerable, patients. An influential set of ideas for our work has been the community development ‘asset-building’ approach, particularly as applied in the Westside of Chicago and elsewhere (Arntson 1989, Morris 1992, Kretzman and McKnight 2003, Westside Health Authority 2006). In this, people are seen as having resources in themselves, with capacities, even gifts, and the challenge for change and development is to identify, build and share these. In this way, deficits and problems, whether expressed in such as physical disability or gun crime rates, can be addressed through the untapped potential of individual and community resources.
Both these approaches argue for a redistribution of focus, resources and power from professional to patient. Professionals have found this re-alignment to be helpful (Goldsmith 1999) in terms of sharing the burden of care. We have found that what is needed in learning for this successful shift is a parallel and complementary process of personal capacity-building for professionals, which we unpick below.
Learning to work together: building new relationships
Harry Cayton suggests that a new professionalism in health care could be defined, not in terms of autonomy, but in terms of relationships. He defines professionalism as found in ‘how people behave towards each other and towards me’ and that includes having the skills to support him in engagement in care and making informed choices (Cayton 2005).
Given the changing roles in healthcare, this emphasis on mutuality, on behaviour in relation to others, is the starting point for fresh approaches to professional learning. What kind of models will most help professionals change their practice?
Models of reflective practice that emphasise the value of engaging in learning from experience and in dialogue with both the self and others through mechanisms like 360 degree feedback, are clearly relevant. We have found, like others (West 2001, Burton 2006), that refining and supplementing the reflective model helps further understanding of the processes needed to ensure learning for transformation. Like others who have involved patients in service design and research (Gillespie et al 2002), we have learned what this new voice brings to progress. We shall now focus on an example of a learning method with a patient voice as a case study, to bring in other helpful concepts.
Example: An effective model for learning with simulated patients
Learning skills with simulated patients (SPs) is now ubiquitous in clinical education. Learners practise talking with SPs, usually in small groups with feedback, sometimes including feedback from the person roleplaying the patient.
Our approach with this learning method includes a significant focus on reflection-in-action and students have the opportunity to experiment with different approaches, both in response to their own reflection on how an interaction went and also to feedback from the SP and peers and facilitators in the room. We are aware of another key conceptual framework to the success of this method: the work of the influential Brazilian educator and community developer, Paulo Freire (1985). Rather than an information-giving, ‘banking’ approach to education that treats learners as empty vessels into which professional educators deposit knowledge, Freire argues that real learning only occurs through a process of dialogue with teachers and other learners, based on mutual respect. In this way, learners and teachers are involved in an active and equal relationship in which both sides learn from each other. We see a parallel with this process and that of the different form of discussion in the professional/patient interview, mooted in the last section. In both processes, ways forward are constantly negotiated; there is no one, right answer and the final responsibility and decision rest with the learner/patient.
This understanding of the learner during the SP method means that learners need to be encouraged to venture into new territory. It is risky, interviewing in public, often about sensitive matters. Where the role-played encounter will go is unknown to all present. We find the writings of Bowlby (1969) useful for understanding why clear structures must be in place for ‘a safe space from which exploration is possible’. Learners must be enabled to identify their real strengths, then use and build on these to respond to difficulties discovered by themselves or others. SPs who bring a patient voice understand how this works; theirs is the most powerful voice in the room.
Too often though, the ‘rules of feedback’ by which such sessions are run and the comments made by others when a learner steps forward to rehearse an interview with an SP, can be applied in a rote, perfunctory fashion that does not encourage real dialogue and honest reflection. Participants in this case, often because of the lack of a feeling of safety, are hidebound by ideas of what they are supposed to say and do, rather than doing the careful ‘work of attention’ to what is actually happening in front of them (Scott Peck 1978).
This is the core challenge for the learner too when talking with the patient, of course. The patient, as in Freire’s model of learning and development, has to be part of defining the problem in order to take an active role in finding a solution. Professionals at all stages of learning need confidence to apply their own clinical expertise while facilitating the patient’s involvement. Confidence-building entails engaging with the person in the professional, showing respect to their perspective and offering, transparently, others’ perspectives.
Professional educators also have to learn how to be open to the yet unknown, in order to model this demanding task for learners (Morris et al 2001). In the SP method, this would mean not writing a ‘script’ for the SP (which risks stereotyping patients, leaving out the perspective of the person playing the role who, in turn, must be open and able to give voice to the person within a patient role), but, rather, creating or refining a role in collaboration with the SP. It would also mean, wherever possible, that the patient voice is engaged in the development of SP roles and the whole learning process. At Leeds University, people from patient and carer groups have joined clinical teachers and professional educators in devising roles for medical student clinical teaching and assessments and scenarios for interprofessional learning by mixed groups of students. Significant adjustments to the original clinician-authored briefs have arisen from these discussions, raising questions about the validity and effectiveness of learning resources developed without such a patient voice. Patients and carers have also trained as SPs and facilitators and become co-teachers.
Our aim is to provide opportunities for patients and professionals to learn to engage in different kinds of encounters. In these, we start to look at not only superficial and technical matters that are often the focus of consultation and communication skills teaching, but go deeper, explore attitudes and reach new understandings. We have found that the patient voice is especially powerful for medical students and doctors in difficulty with communication (Dalton and Morris 2004, Morris P 2005). There is growing evidence for the positive contribution of the patient voice in service improvement (Fisher and Gilbert 2002), but, despite the exhortations of government, the efforts have often been token and their effect minimal (O’Neill 2002). We know that effective learning methods with SPs as co-teachers can help students demonstrate involving patients in consultations (Morris 1992). Whether this new patient voice in learning can make a real difference to clinical consultations in practice is still an open question (Armitage et al 2006); what is clear is that it makes a real difference to the patients and other community members involved.
Transformative learning for practitioners and patients
The work of John Forester (1999) with his concept of the ‘deliberative practitioner’ is helping us to understand more about the transformative potential of such approaches to learning. Deliberative practitioners value the opportunity to learn from the processes of engagement and participation. There is an emphasis on listening and not pushing for solutions too soon, before all parties have had the chance to listen to each other and tell their own stories. As educators, we can support students to learn how to listen, and to avoid what Coles (1989) describes as the ‘rush to interpretation’, by listening closely to patients’ stories. Through this, they learn not only about the facts at hand but about values too; they learn about others, as well as issues.
Launer (2002) describes conversations of discovery in post-modern, narrative consultations and applies this model to supportive conversations between professionals that act as a form of clinical supervision. The basis of this approach, like ours, is to work with the person in the professional or patient and encourage them to voice fresh explorations of problems. This also includes the patient experience within the professional, not to be confused with an independent patient perspective, unlimited by professional mores. Including patient voices in interprofessional exploration of problems or new beginnings gives a way for professionals to break out of the ‘silos that keep them isolated’ (Vancouver conference 2005). In both these approaches and that of the deliberative practitioner (used originally in planning), collaboration in creating and designing new solutions is made possible.
The transformative potential of involving patients in journeys of mutual learning and discovery is further illustrated by the development of our approach to the training of patients. This model enables and supports people to get involved. The approach was developed in collaboration with a group of service users and carers from our local community. Through reflection and sharing experiences, the group discovered that many patient training approaches did not recognise the importance of listening to and building on the stories and experiences of patients. By starting with the personal experiences of patients and only then moving on to consider how this insight and knowledge could become part of professional learning, many of the identified barriers to effective involvement are overcome. In this approach we use and model the same capacity-building theories demonstrated in the section above. So, we make a safe space and encourage people to see their own strengths and use these to address problems and find solutions.
People who have been through this experience have been able to participate fully and meaningfully in learning exercises (O’Neill et al 2005). They report personal benefits to making their contribution, in terms of their sense of worth and well-being. They feel valued and move on in their personal journeys, improve their understanding and confidence, especially when dealing with healthcare professionals and the system, give back to the system that helped them, and help ensure that the system and the people working in it improve their service. They can also, when rewarded appropriately, re-enter the world of work, improving their resources and possible health outcomes.
Steinberg (2005) talks of the need for conversations that include ‘thinking the unthinkable, saying the unsayable’ in the complex and still changing world of health care. This contrasts with ‘training that misses the point’.
When patients and professionals talk and learn together with respect, this appears to ensure the context in which fresh voices can be heard and new insights achieved. Attention and resources to patients’ part in this has wider benefits to patients and their communities.
We acknowledge with gratitude the contribution to this work of our collaborators, in particular, Andrea Armitage, Senior Teaching Fellow in Communication Skills (Patient Perspective) and Jools Symons, Project Co-ordinator for the West Yorkshire Patient Voices project, both based at the University of Leeds, who are taking forward this work; also Ernie Dalton, learning resources consultant, who co-developed the SP training method described and has commented helpfully on this paper.
1. By ‘patient voices’ we mean the active contribution into service development and health professional learning of patients, carers and the community. The term ‘patient’ is used here as shorthand also for other terms used in different settings: client, consumer, service user, survivor, the public.
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This document was added to the Education-Line database on 04 July 2006