Allies or enemies? Evidence-based medicine and consumer choice

• How do consumers respond to the medical profession's determination of "best practice"?

• Are there tensions between the movements for evidence-based medicine and for greater consumer choice?

Although not immediately addressed by this study, other important questions include:

• Should "best practice" be determined only by professionals' judgements?

• Could the use of evidence in fact enhance consumers' ability to make healthcare choices that suit them best?

Fitzgerald and Phillipov suggest that patients may be more averse to risks of interventions, particularly preventive ones, than are doctors. Consequently, the course of action recommended by the profession may not be seen as the best option by patients, and, Fitzgerald and Phillipov argue, disclosing risks may run counter to the goal of implementing best-practice recommendations.¹

This should come as no surprise. The values and concerns of patients and doctors are often quite different. Studies comparing the concerns of patients with what their practitioners believe are most important to patients show at least discrepancies, and often great gulfs, between doctors and patients.^2-6 This must at times translate into different value judgements about healthcare treatments, and a different attitude to individual risks, benefits, and the trade-offs between them.

Part of the problem in translating evidence-based recommendations into action is that the evidence often does not reflect the major concerns of the person who has to make a choice. Trials on the effects of healthcare often measure mortality and other easily measured outcomes, and often overlook key issues of concern to patients, such as quality of life and long term effects. Researchers exploring people's experiences of healthcare, or charting long term progress, are more likely to be using methods other than trials. These will be given less weight by the individuals determining "best practice" according to the hierarchies of evidence that count the randomised controlled trial as the "gold standard".⁷ Some guideline developers, such as the National Health and Medical Research Council in Australia⁷ or the Agency for Health Care Policy and Research in the United States,⁸ consider evidence from literature on consumers' experiences, and include consumer representatives in guideline development groups. However, that is not the way that researchers, medical colleges, and other organisations involved in guideline development traditionally function.

To assess consumer attitudes to three such professionally derived "best practice" recommendations, Fitzgerald and Phillipov presented risk-benefit scenarios to various groups of people.¹ Each group was presented with scenarios related to hormone replacement therapy (HRT), thrombolysis after myocardial infarction, and coronary artery bypass surgery. The drugs and procedure were not named. However, bypass surgery would have been recognisable to many, and thus they would be able to call on frames of reference other than simply the information presented by the researchers. This is important, as only some of the risks and benefits of these interventions were discussed. For example, HRT was presented solely as a therapy to prevent heart disease, with no mention of its principal effects and purpose.

The three scenarios were presented together, perhaps leading survey participants to compare them directly as options for preventing heart attacks. One scenario was a long term daily drug where there was no real disease, one a single injection for dissolving clots after a heart attack, and the third scenario was presented as one-off surgery to correct a diagnosed problem.

The study was hypothetical: imagine you are someone of a specific age, sex, and medical history that may be unfamiliar territory, and an intervention you do not really have to face. The individuals surveyed were by no means a representative sample of the population, nor were they necessarily candidates for these interventions (for example, a third of those being asked if they would take HRT were men). This seriously undermines the ability to extrapolate the results to people's real lives. People's willingness to accept the risk of an intervention can be very different if they are living with the risks and effects of the disease itself.⁶

The authors considered the effect of risk-framing techniques on people's potential reactions, and so presented absolute risk information rather than the more dramatic relative risk equivalent. This is critical, as, for example, it has been shown that these different ways of framing risks even affect doctors' willingness to prescribe HRT.⁹ However, there are many other ways to bias framing, and some are exemplified in Fitzgerald and Phillipov's study. Consider this somewhat emotive statement about coronary artery bypass surgery: "Unfortunately as well as having to endure major surgery, there is a 1 in 20 chance that the surgery will cause death or a stroke."¹ This highlights another of the main issues at the heart of this debate. If evidence is to be an ally rather than an enemy to consumers, then it needs to be used to help inform people's decisions, rather than dictate what should be done or manipulate people down certain tracks. If this is to be achieved, healthcare practitioners need to become far more skilled at communicating meaningfully and objectively about the relative benefits and risks of treatments.

Although many aspects of their study undermine the weight that can be given to its results, Fitzgerald and Phillipov raise some critical issues. At its best, evidence-based medicine will expose many of the value differences between doctors and the individuals and communities they serve. This is to be welcomed. So too is the challenge to improve health professionals' communication skills. The answer to these challenges is not, as the authors appear to suggest, to question whether information should be provided. It is to question who gets to decide "best practice" for the whole community, how evidence is best used, and whose values are driving the evidence-based medicine agenda.

Hilda Bastian
Chairperson, Consumers' Health Forum of Australia
Convenor, Consumer Network of the Cochrane Collaboration
Blackwood, SA
hilda.bastianATflinders.edu.au

1. Fitzgerald SP, Phillipov G. Patients' attitudes to commonly promoted medical interventions. Med J Aust 1999; 172: 9-12.
2. Catalan J, Brener N, Andrews H, et al. Whose health is it? Views about decision-making and information-seeking from people with HIV infection and their professional carers. AIDS Care 1994; 6: 349-356.
3. Freda MC, Anderson HF, Damus K, Merkatz IR. What pregnant women want to know: a comparison of client and provider perceptions. J Obstet Gynecol Neonatal Nurs 1993; 22: 237-244.
4. Jachuk S, Brierley H, Willcox P. The effect of hypotensive drugs on quality of life. J R Coll Gen Pract 1982; 32: 103-105.
5. Orth-Gomer K, Britton M, Rehnqvist N. Quality of care in an outpatient department: the patients' view. Soc Sci Med 1979; 13A: 347-351.
6. Slevin ML, Stubbs L, Plant HJ, et al. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. BMJ 1990; 300: 1458-1460.
7. National Health and Medical Research Council. A guide to the development, implementation and evaluation of clinical practice guidelines. Canberra: Commonwealth of Australia, 1999.
8. Agency for Health Care Policy and Research. Using clinical practice guidelines to evaluate quality of care, vol 1: Issues. US Department of Health and Human Services and Public Health Service, 1995.
9. Nikolajevic-Sarunac J, Henry DA, O'Connell DL, Robertson J. Effects of information framing on the intentions of family physicians to prescribe long term hormone therapy: results of a randomised controlled trial. J Gen Intern Med. In press.

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