Patients and Clinical Practice Guidelines Development
Authors: Rodger J. Winn
Journal: Journal of the National Comprehensive Cancer Network (2004)

The standard definition of clinical practice guidelines explicitly states their aim as "to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances". 1 Over the past several years, the goal of allowing patients direct involvement in managing their health care has been pushed to the forefront, with the emphasis on shared decision-making 2 and patient-centered care. 3The old paternalistic model of unassailable physician-directed recommendations is no longer a tenable approach. 4Patients are expected to understand the reasons for and consequences of the procedures they undergo and the care they receive to be able to decide between alternatives when available.Therefore, clinical practice guidelines, especially versions specifically designed for patient understanding, serve a valuable function in providing the information required for this informed decision-making. 5he implications of using guidelines recommendations as a vehicle for shared decision-making between caregiver and patient are both subtle and profound.If the guideline recommendations reflect only the judgments of a set of expert professionals, do they reflect the sum of the factors that should be considered in advancing those recommendations?Although the goal of any experts developing guidelines is to use the best available evidence in deriving recommendations, physicians recognize that the results of even high-powered clinical trials must be subjected to expert evaluation to ensure proper interpretation and that the results are congruent with other values and practical considerations. 6In the Ottawa Practice Guidelines Development Cycle, evidence-based recommendations derived by a panel of experts are sent to a broad range of practitioners for comments about acceptability, with resultant changes in the final guidelines. 7This ensures that the guidelines have received input from the broadest range of professional perspectives.Another inclusiveness dimension of guideline development must be addressed, however.Halpern 8 pointed out that guidelines devised solely by professionals reflect their views as to what is appropriate.In essence, clinicians use their assessment of what outcomes are important for guiding recommendations.However, as mentioned before, we now recognize that using physician values as the driving force in the patient-physician relationship is not optimal for achieving patient-centered care. 9Similarly, nursing professionals must also respect patient autonomy. 10hus, another important and necessary guidelines attribute is clinical flexibility, and a key manifestation of this is the physician-patient team's ability to consider patient preferences while using the recommendations. 11Viewed from the patient's perspective, however, the implications of being asked to decide on guideline recommendations that are completely professionally derived may be troublesome: they are being presented with a restricted list of options, a list the professionals deem appropriate. 8Are they really being given the full panoply of options for their condition?Are there alternatives that they might choose if they knew about them?An interesting example of this is the study by Slevin et al. 12 evaluating the willingness of patients to undergo intensive chemotherapy compared with the 521