Barton, Jennifer L.

Despite the evolving evidence in favor of shared decision making (SDM) and of decades-long calls for its adoption, SDM remains uncommon in routine care. Reflecting on this lack of progress, we sought to reimagine the future of SDM and the path to take us there. In late 2017, a multidisciplinary and international group of six researchers were challenged by a senior SDM scholar to envision the future and, based on a provocatively critical view of the present, to write letters to themselves from the year 2028. Letters were exchanged and discussed electronically. The group then met in person to discuss the letters. Since the letters painted a dystopian picture, they triggered questions about the nature of SDM, who should benefit from SDM, how to measure its contribution to care, and what new ways can be invented to design and test interventions to implement SDM in routine care. Through contrasting the purposefully generated dystopias with an ideal future for SDM, we generated reflections on a research agenda for SDM. These reflections hinged on recognizing SDM’s contributing to care, that is, as a way to advance the problematic human situation of patients. These focused on three distinct yet complimentary contributors to SDM: 1) the process of making decisions, 2) humanistic communication, and 3) fit-to-care of the resulting decision. The group then concluded that to move SDM from envisioned to routine practice, and to ensure it reaches all, particularly persons rendered vulnerable by current forms of health care, a substantial investment in implementation research is necessary. Perhaps the discussion of these reflections can contribute to a path forward that will improve the likelihood of the future we dream for SDM.

ObjectiveDespite innovations in treatment of rheumatoid arthritis (RA), adherence is poor and disparities persist. Shared decision making (SDM) promotes patient engagement and enhances adherence; however, few tools support SDM in RA. Our objective was to pilot a low‐literacy medication guide and decision aid to facilitate patient‐clinician conversations about RA medications.MethodsRA patients were consecutively enrolled into 1 of 3 arms: 1) control; patients received existing medication guide prior to clinic visit, 2) adapted guide prior to visit, and 3) adapted guide prior to plus decision aid during visit. Outcomes were collected immediately postvisit, at 1‐week, and at 3‐ and 6‐month interviews. Eligible adults had to have failed at least 1 disease‐modifying antirheumatic drug and fulfill 1 of the following: age >65 years, immigrant, non–English speaker, less than high school education, limited health literacy, and racial/ethnic minority. Primary outcomes were knowledge of RA medications, decisional conflict, and acceptability of interventions.ResultsThe majority of 166 patients were immigrants (66%), non–English speakers (54%), and had limited health literacy (71%). Adequate RA knowledge postvisit in arm 3 was higher (78%) than arm 1 (53%; adjusted odds ratio 2.7, 95% confidence interval 1.2, 6.1). Among patients with a medication change, there was lower (better) mean decisional conflict in arms 2 and 3 (P = 0.03). There were no significant differences in acceptability.ConclusionA low‐literacy medication guide and decision aid was acceptable, improved knowledge, and reduced decisional conflict among vulnerable RA patients. Enhancing knowledge and patient engagement with decision support tools may lead to medication choices better aligned with RA patients’ values and preferences.