How Rheumatologists Can Integrate Shared Decision Making into Clinical Practice

CHICAGO—Shared decision making plays a critical role in getting patients involved in their own care and improving the clinical outcomes of their disease. In an ACR Convergence 2025 session, titled Enhancing Shared Decision Making in Rheumatic Disease Management, Jennifer L. Barton, MD, professor of medicine at Oregon Health & Science University; Mrinalini Dey, MBBChir, clinical PhD fellow in rheumatology and internal medicine at King’s College London; and Karine Toupin-April, PhD, an associate professor at the School of Rehabilitation Sciences at the University of Ottawa, provided attendees with key information needed to integrate SDM in clinical practice. Along with defining the principles and importance of shared decision making in managing patients with rheumatic diseases, the experts identified barriers to implementing it as well as tools and resources to facilitate its implementation. They discussed the need to develop actionable plans and illustrated ways to incorporate shared decision making in clinical practice through case studies.

Overview

Dr. Barton led the session by first acknowledging the many definitions of shared decision making and sharing one developed by the Agency for Healthcare Research and Quality (AHRQ) that she feels describes it well:

“Shared decision making is a collaborative process in which patients and clinicians work together to make healthcare decisions informed by evidence, the care team’s knowledge and experience, and the patient’s values, goals, preferences and circumstances.”

She emphasized key steps in shared decision making that include first defining the problem, then creating a choice awareness for the patient, discussing treatment options in detail, discussing what matters most to the patient and finally discussing the patient’s values and preferences to decide the best course of action.

Presenting data from a scoping review of 63 studies in rheumatology, Dr. Barton emphasized that the data show shared decision making improves outcomes in rheumatic diseases by improving patient satisfaction with their treatment decisions, improving self-efficacy in the healthcare setting, improving patient-client trust and improving adherence to chosen treatment plans.¹

However, she also pointed out that rheumatologists often do not engage in shared decision making. For example, in a study she conducted, 30% of adults with RA report poor communication around decision making with their clinicians, and factors independently associated with poorer communication include older patients, those with limited English proficiency, people with limited health literacy and those with a lower trust in their physician.²

Research shows low literacy tools like this RA card increase knowledge, decrease decision conflict, and improve disease activity. (Click to enlarge.)

Dr. Barton developed a multi-lingual rheumatoid arthritis decision aid (RA Choice) for rheumatologists and patients with limited health literacy and limited English proficiency, and tested it in a pilot study. The study showed the low literacy tools increased knowledge, decreased decisional conflict, and improved disease activity, and the decision aid improved the quality of the decision-making process for vulnerable populations with RA.³ She and colleagues currently are conducting a study of a multicomponent shared decision making intervention (which includes the RA Choice decision aid) in more than 400 patients and more than 45 clinicians in three in U.S. Veterans Health Administration rheumatology clinics, the results of which (including intervention materials and clinician training) will be shared among local and national VA rheumatologists.⁴ Images of decision aid tools are included in a supplement to the study.

She also pointed out that shared decision making is included in a number of treatment guidelines, but that there must be “support for better conversations between clinicians and patients that includes awareness of options, discussion of risks and harms of those options, [and] what matters most to patients. A collaborative decision is critical for optimal patient-centered care.”

Barriers

Dr. Dey provided a deeper look at the many barriers to shared decision making in rheumatology, pointing out that although shared decision making is widely promoted in guidelines, “we all know that achieving it in practice is not straightforward.” On the patient level, these barriers include social determinants of health, health and digital literacy, culture and language, the patient’s emotional state and illness perceptions, to name a just a few. On the physician-level, barriers include time pressures, limited training, culture and language, implicit biases, and discomfort and uncertainty with engaging in shared decision making. And on a system level, barriers include fragmented care, a lack of accessible materials, insufficient interpreter or navigator support, and inequities in access to therapies or input from specialists.

For example, Dr. Dey said, implicit bias (i.e., unconscious assumptions based on factors such as age, race, gender, body size, disability or socioeconomic status) are shown to influence prescribing decisions, referral patterns and even the quality of doctor-patient dialogue. “In rheumatology, studies have shown that patients from minoritized ethnic groups are less likely to be prescribed methotrexate or achieve early remission, and older patients are often excluded from aggressive treatment simply because of age-based assumptions,” she said.^5-7

She also highlighted the deleterious effects of health literacy on shared decision making. She pointed to her recent systematic review of more than 16,000 patients with inflammatory arthritis that showed low health literacy, among other factors, was associated with less participation in shared decision making.⁸

She underscored the importance of systematically assessing these invisible barriers in practice to lead toward more pragmatic, community-informed solutions. “Using decision aids and communication tools in consultations can help clinicians have open, non-judgmental conversations about how patients find, understand and act on health information,” she said, adding that this can help make visible the challenges of treating certain patients.

Action Plans

Dr. Toupin-April emphasized that shared decision making can be used to make a variety of decisions in rheumatology that not only include choosing the type of medication for a given disease, but also for managing daily symptoms such as pain, fatigue, stiffness and mental health issues.

She walked session members through a variety of interventions that can facilitate shared decision making in clinical practice, including patient decision aids, decision coaching and healthcare provider training. She provided a number of examples of patient decision aids, including an example of a generic patient decision aid that can be used for different disease types, a decision aid for patients with RA with low literacy, and a web-based patient decision aid for juvenile idiopathic arthritis, called the JIA Option Map, which is currently being tested as an app and not yet available to the public.

She ended by emphasizing healthcare providers can identify improving shared decision making in their practice by evaluating how they follow the shared decision making process, and whether decision-making outcomes in their practice are optimal. “They can identify how to address these needs by choosing [shared decision making] interventions,” she said.

Mary Beth Nierengarten is a freelance medical journalist based in Minneapolis.

References

1. Morrison T, Foster E, Dougherty J, et al. Shared decision making in rheumatology: a scoping review. Semin Arthritis Rheum. October 2022:152041.
2. Barton JL, Trupin L, Tonner C, et al. English language proficiency, health literacy, and trust in physician are associated with shared decision making in rheumatoid arthrtis. J Rheumatol. 2014;31:1290–1297.
3. Barton JL, Trupin L, Schillinger E, et al. Use of low-literacy decision aid to enhance knowledge and reduce decisional conflict among a diverse population of adults with rheumatoid arthritis: results of a pilot study. Arthritis Care & Research. 2016;68(7):889–898.
4. Barton JL, Niederhausen M, Tuepker A, et al. Implementation of shared decision making in rheumatoid arthritis: a study protocol for RAiSeD (Rheumatoid Arthritis Shared Decision Making) stepped wedge, cluster-randomized trial. Trials. 2025;29(1):381.
5. Breathett K, Jones J, Lum HD, et al. Factors related to physician clinical decision-making for African-Americans and Hispanic patients: a qualitative meta-synthesis. J Racial Ethn Health Disparities. Dec 2018;5(6):1215–1229.
6. Adas MA, Norton S, Balachandran S, et al. Worse outcomes linked to ethnicity for early inflammatory arthritis in England and Wales: a national cohort study. Rheumatology (Oxford). Dec 2022;62(1):169–180.
7. Fraenkel L, Rabidou N, Dhar R. Are rheumatologists’ treatment decisions influenced by patients’ age? Rheumatology (Oxford). Dec 2006;45(12):1555–1557.
8. Dey M, Budhathoki S, Elwell H, et al. Association of health literacy with disease outcomes in inflammatory arthritis: a systematic review. Ann Rheum Dis. Sept 2025:S0003-4967(25)04317.1.