Evidence-based patient choice: Integrating science and experience?

Lucie Rychetnik, University of Sydney

Adrian Edwards & Glyn Elwyn (eds.) Evidence-Based Patient Choice: Inevitable or Impossible? Oxford University Press, 2001 (352pp). ISBN 0-19263-194-2 (paperback) RRP $90.00.

In 1992, a group of Canadian-based academic-clinicians coined the term ‘evidence-based medicine’ (EBM) to describe a radical new approach to clinical practice (EBMWG 1992). This catchy phrase was purposefully chosen to jolt and challenge the medical establishment. The message of EBM was that decisions about clinical practice had been too often based on hypotheses derived from laboratory science and clinical opinion, rather than evidence. Evidence, in this context, referred to empirical data from sound clinical research that has demonstrated the actual benefits and harms of medical interventions—as used in practice. The proponents of EBM suggested that clinical decisions would be more reliably informed by the findings of systematic reviews of clinical research than by the often divergent predictions of intervention effectiveness from individual clinicians. A new era in medicine was born.

The EBM challenge has led to a decade of debate, and some controversy, about what is (and should be) the basis of health care decision making. Debates in medical journals and among clinical colleagues have addressed a variety of philosophical and practical questions. For example: hasn’t medicine always been based on evidence—if not, why not? What if there is conflict between the evidence and local clinical experience? Do the findings of clinical trials really apply to individual patients?

For some traditionalists, both the message and the messengers of EBM were unacceptable (Fowler 1995, Morgan 1997). Yet, despite the early controversies that surrounded EBM, the evidence-based movement has led to real changes in the way many medical practitioners and, increasingly, other health professionals use research as evidence. For a start, we are more likely to consider what the evidence tells us, and what it doesn’t tell us. We are also more likely to adopt a critical approach to assessing the quality of that evidence. Also, summaries of evidence are more readily available to decision makers. This is thanks to the internet, and to the work of organisations such as the Cochrane Collaboration, which conducts and disseminates systematic reviews.

The principles of evidence-based medicine are concisely and clearly summarised in Muir Gray’s chapter in this book. However, the main contribution of the book is its exploration of the merging of EBM with another health care phenomenon—that of ‘patient-centred’ decision making. The result of this union has been labelled ‘evidence-based patient choice’ (EBPC). This describes an approach to health care that aims to incorporate the science and rigour of EBM with the values of the consumer movement, which emphasise patients’ rights and patients’ autonomy.

The editors, Edwards and Elwyn, introduce EBPC in the first chapter. They propose that EBM, like traditional medicine, was based on a biomedical view of health care. This view focused on the clinician who managed the patient’s disease. EBM was about improving the clinician’s use of evidence to determine the most appropriate treatment for that disease. Evidence-based patient choice has a different emphasis and is thus presented as a new development and extension of EBM. EBPC brings the patient to the fore (rather than the clinician) and the patient’s experience of the disease, that is, the effect of the disease on the patient’s life and how he or she functions in society. The distinguishing factor of EBPC is that it is about clinicians assisting patients to understand what is known about the benefits and harms of treatment options, and enabling patients to make the decision about how to proceed.

Evidence-based patient choice brings the patient's experience to the fore, rather than the clinician's expertise.

This book is a collection of eighteen chapters examining EBPC from different perspectives: the underpinning theory, principles and concepts, what EBPC means in practice, and future directions for EBPC. The contributors include clinicians, researchers, consumer representatives, and policy makers from the UK, Canada, the US, Europe, and Australia. Many of them have been involved in the evidence-based movement since its inception and have published widely on the topic. Several contributors are familiar to followers of EBM for leading the call for a more patient-centred approach.

EBPC is not yet widely understood or established in health care policy or practice. This book explores many of the practical and ethical issues and debates raised by the consumer-oriented approach that have not been addressed adequately to date by existing texts:

  • modes of presenting evidence to patients, and how intervention benefits, harms and risks should be communicated

  • professional skills and competencies that are required to facilitate EBPC

  • how patients weigh and interpret evidence to make decisions about their health care, and how their preferences may differ to the recommendations made by clinicians

  • ethical questions on whether/when health care professionals or policy makers’ interpretations of the evidence should override individual choices of patients

  • how constraints on patient choice should be dealt with by the health system, and how these constraints should be presented to the public.

Not all doctors are comfortable about handing over the responsibility for treatment decisions to their patients.

To many of us working in health research and practice, the shift to EBPC sounds appealing in principle. It brings with it, however, new considerations and challenges. For example, when EBM was first introduced, many clinicians were uncomfortable about the way it highlighted the uncertainty of clinical practice. Explicit uncertainty about medical intervention may also be a concern to patients. Some patients welcome the idea of a treating doctor being honest about their uncertainty of the likely effects of treatment options. Others however, prefer their doctor to exude utmost confidence in their clinical practice, especially if it helps the patient to maintain positive thinking about their prognosis.

It is also the case that not all doctors will feel comfortable about handing over the responsibility for treatment decisions to their patients, particularly if a patient chooses options that conflict with the doctor’s clinical recommendation. Patients who feel sick and frightened may actually prefer the doctor to take charge and make these decisions for them—without going into the details of what is said in the evidence. I think a significant challenge for EBPC is for health professionals and patients to work through this maze of differing values and preferences, and to clarify their expectations of each other. EBM has led health professionals to revisit what is deemed to be ethical practice (Leeder & Rychetnik 2001). It seems that EBPC has the potential to raise many more questions about the ethics of health care. This is probably a good thing, especially if EBPC successfully draws health consumers (and society as a whole) into debates about what we all want from the health system.

In my view, one of the key distinctions between EBM and EBPC is demonstrated by Trisha Greenhalgh’s contribution to this book on ‘narrative and patient choice’ in the section titled ‘EBPC in practice’. This chapter is about the clinical importance of the patient’s story—that is, the patient’s description of their illness, and their interpretation of that experience. Greenhalgh illustrates how EBPC aims to use the patient’s story and values to provide a context for interpreting the evidence, and thus determining the most appropriate clinical care.

Many commentators perceived that stories, narratives, and other qualitative data were undervalued in the practice of EBM, which relies primarily on quantitative data. It is an omission for which EBM has been strongly criticised (Carr-Hill 1995, Little 1998). In contrast, EBPC appears to embrace and celebrate the interpretive paradigm of research and practice. I think this embrace may go some way to allay the fears of those who felt that EBM championed the science of medicine at the expense of the art of clinical practice—an art that is much more reliant on intuition, qualitative interpretations, and communication.

The future of EBPC will depend on the initiatives of consumer organisations and policy makers.

Consumers find evidence useful when it is presented in a form that is personalised and can guide them through a structured decision process. Annette O’Connor and Adrian Edwards’ contribution provides an excellent and detailed overview of the role of ‘decision aids’ in promoting EBPC. In my view, decision aids are potentially one of the most concrete and practical manifestations of EBPC. As O’Connor and Edwards describe them, decision aids ‘build on the conceptual frameworks of shared decision making and seek to implement effective risk communication and values clarification’ (p. 239). In their overview, O’Connor and Edwards draw on their own substantial experience in developing decisions aids, as well as empirical research evaluating the use of decision aids in practice. They conclude that although the implementation of decision aids in routine practice is currently limited, there is great potential for the benefits that have been demonstrated in research settings to become available to patients in a wide range of decision contexts.

It is probably worth noting however, that the future of EBPC will depend as much on initiatives taken by consumer organisations and policy makers, as on the work of health researchers and practitioners. Two local developments have the potential to move Australians a step closer towards the goal of EBPC. Firstly, the Australian Consumers Association has begun publishing evidence-based reports on health products and health treatments in their Choice magazine. They are written for the general public using lay terms, but are based on evidence from the Cochrane library of systematic reviews. Recent reports presented the evidence on the effectiveness of ‘alternative’ cold remedies, and over-the-counter cough medicines. The second development, announced in July 2002, is that the Federal Minister for Health and Ageing has requested the National Institute of Clinical Studies (NICS) to negotiate a national subscription to the Cochrane library. This would provide the public with free on-line access to evidence reviews via the NICS website.

The future of EBPC and many of the barriers, problems, threats, and potential solutions are addressed concisely by Margaret Holmes-Rovner, Hilary Llewellyn-Thomas, and Glyn Elwyn in chapter sixteen, and Angela Coulter in chapter eighteen. They acknowledge that there is still a long way to go, and that those who hope to move EBPC into mainstream practice may face a challenge that is as great, if not greater, than the one faced by the first proponents of EBM. The range of clearly articulated perspectives in this book is a valuable contribution to their efforts.


Carr-Hill, R. 1995, ‘Welcome? To the brave new world of evidence-based medicine’, Social Science and Medicine, vol. 41, no. 11, pp. 1467–1468.

The Cochrane Collaboration [Online], Available: http://www.cochrane.org/ [2002, August].

EBMWG (Evidence-based medicine working group) 1992, ‘Evidence-based medicine: a new approach to teaching the practice of medicine’, Journal of the American Medical Association, vol. 268, no. 17, pp. 2420–2425.

Fowler, P .B .S. 1995, ‘Evidence-based medicine’, The Lancet, vol. 346, no. 8978, p. 838.

Leeder, S .R. & Rychetnik, L. 2001, ‘Ethics and evidence-based medicine’, Medical Journal of Australia, vol. 175, no. 3, pp. 161–164.

Little, M. 1998, ‘Assignments of meaning in epidemiology’, Social Science and Medicine, vol. 47, no. 9, pp. 1135–1145.

Morgan, W. K. C. 1997, ‘On evidence, embellishment and efficacy’, Journal of Evaluation in Clinical Practice, vol. 3, no. 2, pp. 117–122.

National Institute of Clinical Studies. [Online], Avaliable: http://www.nicsl.com.au/ [2002, August].

Dr Lucie Rychetnik is Senior Associate with The Health Projects Group in the School of Public Health at the University of Sydney.