Findings from the Patient Involvement Project - The King's Fund

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Summary of Findings from the Patient Involvement Project - The King's Fund

CHANGING RELATIONSHIPS Findings of the Patient Involvement Project Research PAPER Date Editors OCT 2002 ROSEMARY GILLESPIE DOMINIQUE FLORIN STEVE GILLAM ? ➠ ➠ Changing Relationships: Findings from the Patient Involvement Project ROSEMARY GILLESPIE, DOMINIQUE FLORIN AND STEVE GILLAM The King’s Fund is an independent charitable foundation working for better health, especially in London. We carry out research, policy analysis and development activities, working on our own, in partnerships, and through grants. We are a major resource to people working in health, offering leadership and education courses; seminars and workshops; publications; information and library services; a specialist bookshop; and conference and meeting facilities. Published by King’s Fund 11–13 Cavendish Square London W1G 0AN © King’s Fund 2002 Charity registration number: 207401 First published 2002 All rights reserved, including the right of reproduction in whole or in part in any form. ISBN 1 85717 468 2 A CIP catalogue record for this book is available from the British Library Available from: King’s Fund Bookshop 11–13 Cavendish Square London W1G 0AN Tel: 020 7307 2591 Fax: 020 7307 2801 Edited by Fiona Weston Cover design by Minuche Mazumdar Farrar Typeset by Peter Powell Origination and Print Limited Printed and bound in Great Britain Contents Executive summary v Introduction 1 Part one: policy analysis 2 Social change 2 Policy framework for wider patient choice 3 Organisational change 5 Professional developments 6 Conclusion 8 Part two: the study 10 Methods 10 Findings 11 Conclusion 24 Recommendations 26 References 28 Acknowledgements 31 In the past few years, rapid and significant changes have taken place in the social, political and policy environment in which health professionals and patients interact. This paper reports on the Patient Involvement Project, a King’s Fund study that assessed changing relationships between health professionals and patients/ clients in a changing health environment. Part one of the report constitutes a policy analysis that sets out the context for changing relationships. Part two reports on an empirical study designed to contribute towards a fuller understanding of changing relationships and patient involvement in health care. Part one: policy analysis Social changes, organisational changes and changes within professional groups have started to challenge traditional relationships in health care, in particular the power of medical professionals. Throughout the 1980s and 1990s, governments set out policies designed to facilitate an increasingly consumerist approach to health services. This process gained momentum in 1997 when the Labour Government came to power with a commitment to provide a more open, accountable and patient-centred service. Several high profile inquiries in the past few years have also provided a catalyst for changing the relationship between patients and clinicians. This has led to higher expectations for the provision of information and the sharing of power and decision-making in individual clinical encounters, and has put the spotlight on face-to-face relationships in health care services. So far, developments have focused mainly on macro-level public participation, and although the quality of face-to-face relationships is difficult to measure, progress towards empowerment, the sharing of power, increased patient choice and patient-centred care appears less well advanced. The extent to which the service will become truly more democratic, and to which the Government will relinquish central control, remains to be seen. There also remain unresolved moral questions about equity of access and how far choice might reasonably be devolved to service users in an environment of finite resources. Further work is needed to establish what goes on in individual, face-to-face clinical encounters, and the extent to which stakeholders are taking forward an agenda of patient-centred care and the sharing of power in clinical encounters. In addition, the extent to which attitudes and culture are changing within the service in accordance with public expectations needs to be considered. Part two of the report sets out the findings from an empirical study designed to contribute to this. Executive summary Part two: the study The empirical part of the project assessed changing relationships and the meaning of patient-centred care. Forty-five semi-structured interviews were carried out with stakeholders drawn from a range of key areas. These included: • the Department of Health and health policy agencies, including the Commission for Health Improvement, the Modernisation Agency and the National Institute for Clinical Excellence • medical and nursing schools • regulatory bodies • patient/user groups • consumer organisations • senior officers from the Royal Colleges and professional organisations. The key questions addressed The key issues addressed in the study emerged from a small series of pilot interviews that helped to shape the main research and highlighted areas of particular concern to the stakeholders involved. The key questions included: • What is meant by patient-centred care? • How well is patient-centred care understood by key stakeholders? • Is there commitment among stakeholders to forge a patient-centred agenda in health care? • What is currently being done in these groups to forward this agenda? • What are the barriers to the provision of patient-centred care? Findings Analysis of the data involved looking for patterns and categories in respondents’ accounts. A range of key themes emerged: Considerable disparity in understanding of patient-centred care There is a wide gulf between the published literature on shared decision-making and patient-centred care, and respondents’ understanding of these. Although respondents often described the need for partnership and placing patients ‘at the centre’, different groups described patient-centred care in different ways: • Biomedical approach Health professionals generally adopted a biomedical approach to patients’ treatment decisions • Social model Members of user groups more often adopted a social model, drawing on their whole life experience of illness, disease and disability. Tendency to re-brand existing activities as patient-centred care Given the lack of clarity surrounding the meaning of patient-centred care, and therefore how to achieve and evaluate it, it is not surprising that different groups within the service tended to focus on their own area and redefine this as patient- centred care. This was particularly apparent in three areas: vi CHANGING RELATIONSHIPS • Communication skills Conflating the teaching of communication skills with patient-centred care in the professional education of health professionals • Quality assurance Reconfiguring quality assurance as patient-centred care • Public participation Collapsing patient-centred care into public participation. Barriers to change The barriers to providing a patient-centred service highlighted by respondents were: • Attitudinal change Although there was evidence of attitudinal change among some respondents, there was also evidence of intransigence and the persistence of medical paternalism. • Resources and inflexible structures Although there was evidence of some innovation, respondents emphasised that the changes needed to promote a patient-centred service would not be possible without access to adequate funding and staffing levels, and in a climate of low morale. • Social divisions and social exclusion Respondents highlighted the difficulties in delivering a patient-centred approach amid social divisions, social exclusion and among different cultural groups. Conclusion A lack of direction from the Government and service leaders, and a lack of clarity in the use of the term among stakeholders, has given rise to confusion about the meaning of the term ‘patient-centred care’. A fuller understanding and better co-ordination across different functions of the service is needed in order to facilitate a coherent approach. Policy initiatives to democratise the service and to make it more patient-centred have focused predominantly on public participation and lay involvement at the macro level. They have focused less on changing the culture, attitudes and behaviour of professionals – approaches that are necessary to affect face-to-face encounters between individual health professionals and patients. Although there was evidence of intransigence among some respondents, there was also evidence of enthusiasm, self-reflection, and innovation among others. It remains to be seen whether barriers can be overcome, and whether recent increases in resources will be enough to generate the wider transformation of the service needed to affect individual clinical encounters. The continuing grip on services exerted by central Government casts doubt on the extent to which power and control can really be shifted to patients. Crucially, the extent to which these changes will affect the culture, attitudes and behaviour of those working in the service, and transform power relations in face-to-face relationships between professionals and patients, also remains to be seen. Recommendations • Patient-centred care has a wide spectrum of meaning. Greater clarity and leadership is needed from all stakeholders including ministers, policy-makers, EXECUTIVE SUMMARY vii senior managers and health professionals in relation to the widely used yet poorly understood concept of patient-centred care. Patients, users and carers also need to be central in defining and evaluating patient-centred care. • In order to help health professionals design, plan and deliver patient-centred care, there is a need for wider research that draws on and explains face-to-face relationships between professionals and patients. • The Government and taxpayers need to understand that adequate resources will be needed to transform face-to-face encounters as patient-centred services will almost certainly be more costly in terms of time, manpower and wider resources. • Patient-centred care, shared decision-making and patient information all need to be recognised as separate from the macro-issues of public participation. Greater clarity is needed on how these might affect each other. For example, a more democratised service might lead to greater choice for individual patients, but public participation is distinct from patient-centred care. • Patient-centred care means different things to different professional groups within the service. Each of these is an important component. There is a need for better co-ordination across the service in order to encompass the full spectrum of patient-centred care. • Challenges for the future include the need to change practice, attitudes, structures and philosophy in order to promote a modern approach to health care delivery in which power and decision-making are shared and face-to-face relationships are more equal. Health professionals need to be equipped with new skills in order to meet these challenges. • Professional bodies need to take a proactive position in transforming face-to- face relationships with patients. For example, their role in self-regulation and maintaining standards needs to include promoting patient-centred care and monitoring face-to-face clinical encounters with patients. • Increased access to information for patients is a key aspect of patient-centred care. The Internet has already transformed communication and access to information for many. New technologies are already opening up opportunities for new and different relationships between health professionals and patients, and the scope for this is set to increase. Opportunities for quick and easy access to information for professionals and patients alike need to be grasped, as well as opportunities for innovative ways of delivering services through, for example, teleconferencing. • There is a need to change the culture, attitudes and behaviour of those providing the service. In addition, changes are needed in the way that consumers use services that extend beyond the role of health services. Other agencies – such as education services, local authority library services, social security and immigration services – all need to work together to enable citizens to make appropriate choices in their health care. In addition, in an increasingly litigious society, individuals need to develop the knowledge and skills to enable them to share the burden of responsibility for treatment choices. viii CHANGING RELATIONSHIPS The exchange and provision of information is at the core of an open and honest relationship between healthcare professionals and patients. ( In the past few years, rapid and significant changes have taken place in the social, political and policy environment in which health professionals and patients interact. The recommendations following the inquiry into children’s cardiac services at the Bristol Royal Infirmary include wider involvement and access to information by patients and their families, and increased partnership, honesty, transparency and openness with patients, carers and the public. There is a growing momentum for change in the way that health professionals, particularly those in the medical profession, engage with patients and the public. During the late 1990s and early 2000s, the Government outlined various policies that were designed to facilitate increased public and patient involvement in the NHS, and to make it more responsive, inclusive and accountable to the needs of those who use it (Department of Health 1999, 2000, 2001). Similarly, many health professionals have been instrumental in the promotion of increased patient involvement in decision-making, which is seen as pivotal to improving the quality of care (Elwyn et al., 1999a; O’Connor and Edwards, 2001). These social and policy changes have, in turn, affected relationships between groups of health professionals, on the one hand, and between providers and consumers of health care, on the other. The public and patients are becoming increasingly involved in partnerships at the level of policy, planning and delivery of services. The term ‘patient-centred’ care has come to be used widely by those in government, policy analysis and service delivery. Yet what does the term ‘patient- centred’ mean? In what ways might relationships with health professionals and services change, and how might we evaluate these changes as an approach to patient care and service delivery? This paper reports on a King’s Fund project that focused on changing relationships between health professionals and patients/clients in a changing health environment. Part one provides an analysis of the social, policy, professional and organisational context for wider patient choice, shared decision-making and patient-centred care. Part two presents the findings of an empirical study that considers the extent to which key stakeholders are taking a patient-centred agenda in health care forward. Finally, the report provides recommendations that it is hoped will contribute to the promotion of an increasingly patient-centred approach to patient care in the health service. Introduction Medical sociologists have used the terms ‘deprofessionalisation’ and ‘proletarianisation’ to describe the effects on medicine of wider social trends that have affected occupations which enjoyed privileged status on the basis of their technical expertise in late twentieth century societies (Haug and Lavin, 1983; McKinlay and Arches, 1985; McKinlay and Stoeckle, 1988; Weiss and Fitzpatrick, 1997; Barnett et al., 1998). However, whereas proletarianisation places most emphasis on the changing working conditions of doctors in terms of salaried practice and management control, deprofessionalisation stresses the changing relationships between doctors and patients (Elston, 1991). Although this literature focuses predominantly on health care in the USA, to some extent both these processes can also be seen to be occurring in health care in the UK. Social change Significant social change in recent years has had a major impact on the way that the public views health professionals, particularly the medical profession. This process of deprofessionalisation is linked to wider social transformations, as a result of which, some writers argue, medical knowledge is becoming increasingly demystified and the power of the medical profession diminished (Hardy, 1999). An increasingly critical media, an improvement in general levels of education, and the increased availability of information technology, particularly the Internet, have made information about health issues, illness and disease readily available to a growing number of individuals and have contributed to challenges to medical power. Although not all Internet sites provide high quality information, and wider knowledge is often necessary to enable individuals to interpret material objectively, specialist knowledge that was previously accessible only to specific, hegemonic professional groups through academic databases and professional journals has become more widely available. Evidence of the impact of this on individual clinician–patient relationships is currently sparse, but, as Hardy (1999) suggests, the potential for the Internet to transform these relationships may be significant. Challenges to medical dominance by self-help groups and patient organisations can be traced back as far as the 1960s, and have come to be a catalyst for change in the relationship between providers of care and service users, promoting self- help, independence and taking control of health and illness. For example, in the 1990s, increasingly empowered and articulate young, male homosexuals challenged their prejudiced status and articulated their demands for the treatment of HIV and AIDS (Squire et al., 1991; Johnson et al., 1993). Other challenges to medical paternalism have come from a feminist critique challenging medical control over female sexuality, fertility, reproduction and mental health (Ehrenreich and English, 1976; Savage, 1986; Miles, 1988; Ussher, 1991; Oakley, 1993). Part one: policy analysis Similarly, the rise in the number of patients seeking complementary therapies has helped to generate a climate of demand for more patient-focused services (Gordon, 1995; Trevelyan, 1998). In addition, patients have become more litigious, with a consequent increase in medical negligence claims: the number of claims rose by 72 per cent between 1990 and 1998, and 10,000 new claims were received during the year 1999–2000 (National Audit Office, 2001). Finally, several high profile inquiries have highlighted the failure of some within the medical profession to live up to the standards expected by the general public. These include the inquiry into children’s cardiac surgical services at the Bristol Royal Infirmary between 1984 and 1995, and into the removal, retention and disposal of patient organs at Liverpool’s Alder Hey Hospital in 1999. The extent of public disquiet and long-term damage to individual relationships between clinicians and patients that these have caused is difficult to measure. Nevertheless, the recent lack of public confidence over the MMR (measles, mumps and rubella) vaccine shows that such failures in the partnership between professionals and patients can have repercussions in the arena of public policy. The effect of this has been for policy-makers to place patient and public involvement high on the political agenda, and has led the way for a more open, honest and informed approach to the consumption of health care services. Policy framework for wider patient choice Traditionally, the provision of health care was based on medical paternalism, under which doctors were the key decision-makers and patients were passive recipients with few opportunities to participate in decisions about policy or treatment, or the planning of services (North, 1997). Through their privileged position in the professional and organisational hierarchy, doctors have had the power to influence the organisational culture, professional practice and ethos in the NHS since its inception in 1948. The profession’s close and influential association with policy-making resulted in doctors being able to influence resource allocation and define as ‘professional issues’ areas that they alone were qualified to manage (Klein, 1989). Nursing, midwifery and other allied semi-professions (Etzioni, 1969) remained subordinate and weak against medical dominance and paternalism. However, in the 1980s, a political climate of strong Conservatism, demands for greater accountability and control emerged. The Thatcher and Major governments of the 1980s and early 1990s articulated commitment towards a more consumerist service through policies such as the quasi-consumerism of the internal market, wider scrutiny of the medical profession through medical audit, and the Patient’s Charter, designed to make services more responsive to patients’ needs and for the first time set out patients’ rights. Similarly, Local Voices (Department of Health, 1992) required health authorities to take account of the views of local people in the planning of services. However, although these reforms were radical and wide-ranging for their time, they were mostly concerned with improving efficiency and value for money. Tensions remained between what was still a predominantly ‘top down’ approach to policy-making and an expressed commitment towards a more consumer-oriented service. Little was done to address underfunding, or to provide consumers with a real choice of services or access to them (Health Care UK, 1990). PART ONE: POLICY ANALYSIS 3 In comparison with many other developed countries, the British health service has traditionally been a relatively ‘low choice’ system (Florin and Coulter, 2001). Patients register with one general practitioner (GP), who then acts as ‘gatekeeper’ to specialist services, rather than being able to enjoy open access to specialist services. Similarly, secondary health care is provided on the basis of local contractual arrangements whereby patients do not generally choose either the specialist or the hospital at which they receive their treatment. The idea that patients and the public should be more fully involved in the service and that it should be more responsive to patients has gained support and has increasingly come to dominate political and policy discourse on health care. In addition, since the election of the Labour Government in 1997, terms such as ‘public involvement’ and ‘patient-centred care’ are increasingly common in political speeches and policy processes. The precise meaning and extent of these terms, however, has not been made clear. Prior to the general election, the Labour Party had articulated in its manifesto a commitment to a wider scrutiny of the service and increased public involvement. Since coming to power in 1997, a range of initiatives has been rolled out. The New NHS (Department of Health, 1997) and The NHS Plan (Department of Health, 2000) set out plans for increased access to information and greater transparency over performance and quality of local services through the National Performance Assessment Framework (NPAF) and the Commission for Health Improvement (CHI). Similarly, the yearly National Patients’ Survey was set up to evaluate patients’ experiences of the NHS. In 1998, clinical governance was introduced to provide a systematic approach to the delivery of high quality care with ‘patient-centred care at the heart of every NHS organisation’ ( A new system for complaints is currently being established that will work closely with the new Patient Advice Liaison Services. Since 2002, trusts have been required to produce patient prospectuses that include information on services, performance, and their response to issues raised locally by patients. Central to the Government’s agenda to facilitate wider public involvement has been its expressed commitment to increased patient choice. This was one aim of developments such as NHS Direct and Walk-in Centres. However, although these services have generally been well evaluated by those who use them, and can provide access to services for patients not registered with a GP, evidence also suggests that these services may not reach those in greatest need (Appleby and Coote, 2002). Further measures to promote patient-centred services and increased choice have included The Expert Patient (Department of Health, 2001), which established a range of self-managed programmes designed to draw on patients’ own skills and knowledge in the management of chronic illness. The proposed establishment of the Commission for Patient and Public Involvement in Health, a new public body charged with the task of empowering individuals and communities, is designed to ensure the NHS listens and responds to patient needs. Since 1997 there has been an escalation of rhetoric and the introduction of policies designed to increase public involvement and extend patient choice. However, in reality they do little to challenge the dominance of the medical model or offer alternatives to existing provision. In addition, tensions exist between the 4 CHANGING RELATIONSHIPS development of new structures for public participation and existing organisations. For example, the proposed abolition of the independent and often highly critical Community Health Councils and their replacement with potentially less independent groups located within the health service itself, such as Patient Advice Liaison Services, has caused widespread debate and disagreement. Although the Government has emphasised that levels of public participation and patient choice will be significantly increased, so far it has relinquished little control. Organisational change Organisational change has been a feature of the NHS since its inception in 1948, but the focus has been primarily on changing organisations and structures rather than on face-to-face relationships. Since the late 1980s, however, the pace of change has increased in ways that place huge pressures on health professionals, requiring them to play a greater part in management and in running health organisations, while also carrying out their professional roles. The advent of new primary care organisations – Primary Care Groups (PCGs) and Primary Care Trusts (PCTs) – the reconfiguration of trusts, and the development of partnerships between health care providers and social care services, all offer new opportunities to professionals and patients alike for increased partnership and democratisation. The additional responsibilities associated with these new structures provide new challenges as well as potential distractions from the business of improving the way that individual practitioners engage with patients. Changes to the contractual arrangements and working practices of health professionals, particularly the new GP contract, might impact on professional hierarchies, and in particular medical power, by removing practitioners’ autonomy over the way they provide services and share roles with other health workers. In addition, clinical governance increasingly determines and restricts what individual practitioners are able to do by placing responsibility for quality on individuals and teams providing care, making them externally accountable for the care they provide. Clearer lines of responsibility and accountability for the quality of care provided should be welcomed. Yet locating these responsibilities in provider organisations, rather than, as in the past, for example, in the Royal Colleges, provides a challenge to professional power, and is seen by some as undermining the privileges of professional status or ‘traits’ of self-regulation and autonomy traditionally enjoyed by professional groups (Greenwood, 1957). Similarly, recent Department of Health initiatives to improve performance include a ‘star rating’ system of measuring, rewarding and punishing those parts of the NHS perceived to be doing well or badly. However, these may be a blunt instrument for measuring quality and can serve to undermine professional morale. In recent years, professional organisations, partly in response to public criticism and pressure and a more democratic ethos, have embraced wider public involvement and greater transparency in their affairs. Increased consultation with patients and the involvement of consumer groups in the affairs of professional bodies have resulted in the growth of public involvement through, for example, patient liaison groups within Royal Colleges and the British Medical Association (BMA). In addition, modernisation and wider transparency in regulatory bodies PART ONE: POLICY ANALYSIS 5 such as the Nursing and Midwifery Council (formerly the United Kingdom Central Council for Nursing and Midwifery) and the General Medical Council (GMC) have included a greater role for lay members and lay participation. Other examples include the constitution of the Commission for Health Improvement (CHI), which requires at least eight of its 14 commissioners to be lay members. Further changes in the organisational culture of the service have recently helped to transform doctors’ relationships with other health care practitioners. Traditionally located at the apex of the medical occupational hierarchy, doctors have seen their roles transformed by changes or ‘re-engineering’ of the roles of other health care workers. Examples include the extension of the role of the nurse into traditional areas of medical practice such as nurse prescribing and patient consultation, the latter in NHS Direct and nurse-led walk-in centres. Although on the one hand these types of service provision may be seen to provide wider patient choice of the style of consultation, they are seen by some professionals as undermining the traditional doctor–patient relationship and being disruptive to continuity of care (Jones, 2002). Barnett et al. (1998) highlight that the waning of professional autonomy may result from medicine being more regulated than ever before, through, for example, clinical governance and performance indicators. Treatment protocols, national service frameworks and evidence-based decision-making all seek to reduce variations in performance and promote good practice, but they can also impede patient choice. They also restrict professional autonomy and risk a lack of engagement by health professionals with the Government’s modernisation agenda. Professional developments Meanings of public involvement and patient-centred care are often conflated by government and policy-makers. An approach that placed patients and their experience at the centre of the consultation process dates back to the work of Michael Balint (1957), and is not therefore new. Throughout the 1970s and 1980s, understandings of the lay–professional interface drew on analysis of the way in which professionals and patients related to each other and the roles each adopted in the clinical encounter. Byrne and Long (1976), in a study of behaviour between doctors and patients, identified a range of clinical practice styles that polarised into those that were doctor-centred and those that were patient-centred. Doctor-centred clinical practice styles were defined as tightly controlled, using closed questioning techniques, and with patients’ problems being defined in biomedical terms. Patient-centred styles, on the other hand, were seen as much less authoritarian and paternalistic, giving greater attention to patients’ own accounts and to the holistic and psychosocial aspects of patients’ problems. Stewart and Roter (1989) also highlighted a range of clinical practice styles, as determined by the amount of control exerted by both patients and professionals. Clearly, different styles of encounter between health professionals have been shown to be suited to different patients, groups or specific health needs. However, while health professionals may claim to be practising patient-centred care, little is really known about what really goes on between health professionals and patients in individual face-to-face encounters, and further research is needed in this underdeveloped area. 6 CHANGING RELATIONSHIPS