As Shared Decision Making Month drew to a close at the end of March, I found myself reflecting on forces that get in the way of all patients sharing in their fateful health decisions. One potential collision is between clinical practice guidelines, with their related performance measures, and the preferences of informed patients.
Clinical practice guidelines are tools meant to ensure that medical practice is evidence-based. Increasingly, insurers and health systems use performance measures based on guidelines to judge the quality of clinicians’ practices, sometimes even tied to financial incentives. Even though early writings by leaders of the guideline movement, such as Dr. David Eddy, emphasized the importance of including patients’ perspectives as key stakeholders in guideline development, that hasn’t happened very often. Instead, guideline panels of clinician experts try to guess what patients would want as they develop guidelines. Healthwisers know that’s a potential recipe for a collision … preference misdiagnosis on a grand scale! Moreover, observers of the process have commented that the current guideline-development process too often depends on expert opinion more than medical evidence, and it is riddled with conflicts of interest.
Let’s consider an example. Osteoporosis is a common condition among postmenopausal women (and some older men). The main clinical practice guidelines for osteoporosis diagnosis and treatment come from the National Osteoporosis Foundation (NOF), an advocacy group rather than a professional society or governmental body. The NOF’s Corporate Advisory Roundtable lists multiple groups and companies that stand to gain from particular approaches to osteoporosis diagnosis and treatment, including drug companies, companies that make bone density measuring equipment, and even “The Alliance for Potato Research and Education.” NOF’s guidelines recommend relatively aggressive thresholds for treatment of osteoporosis, including consideration of treatment of women with “osteopenia” (lower bone density short of osteoporosis), despite a lack of direct scientific evidence of benefit for these women. But a recent study from New Zealand found that most women would want to be at an even higher risk before considering long-term treatment.
To the rescue comes a report from the prestigious Institute of Medicine, “Clinical Practice Guidelines We Can Trust.” The principles for the development of trustworthy guidelines include recommendations based on a systematic review of existing evidence, representation of patients and patient advocates in the guideline-development process, and careful management of conflicts of interest. Increasing numbers of guidelines that follow these principles should reduce the potential conflict between guideline recommendations and patient preferences. More and more guidelines are advising a shared-decision-making process between clinicians and patients when there is more than one reasonable diagnosis or treatment strategy. Such guidelines include recommendations on PSA testing by the American College of Physicians and American Urological Association and on management of diabetes by the American Diabetes Association. Healthwise certainly supports these efforts to make clinical practice guidelines more patient-centric.