FAIR Health Continues to Advance Shared Decision-Making Project Funded by New York State Health Foundation
September 16, 2021
Maintaining its commitment to addressing disparities that affect communities of color, FAIR Health continues to advance its shared decision-making (SDM) project “An Initiative to Advance Shared Decision Making,” funded by the New York State Health Foundation. Recent completion of focus groups with public health experts, practitioners, community advocates and patients will illuminate the project’s path forward.
In line with FAIR Health’s mission to promote transparency in healthcare costs, this project will feature decision aids (DAs)—educational materials combining clinical and cost information—that are expected to facilitate SDM discussions between patients of color and their physicians. SDM, the discussion between patients and/or caregivers and healthcare providers regarding treatment options balancing clinical evidence with patients’ preferences, has shown promise for increasing patient engagement and reducing healthcare costs. The initiative seeks to enhance health insurance literacy among people of color, as well as access to transparent and objective information regarding treatment options and related costs that can facilitate SDM discussions.
With the goal of making a comprehensive assessment of the needs of patients of color, and in collaboration with Chima Ndumele, PhD, MPH (Associate Professor of Health Policy at Yale School of Public Health, Faculty Associate at the Institute for Social and Policy Studies and a member of the FAIR Health Academic Advisory Board), and esteemed FAIR Health Board member Zachary Carter, FAIR Health completed focus groups with public health experts and patients in July. The purpose of the focus group discussions was to garner insights into challenges faced by patients of color in navigating the healthcare system, especially related to understanding and managing healthcare costs, and to gather opinions on the clinical conditions being considered for the SDM tools. These focus groups, comprising healthcare providers, public health practitioners and community advocates, offered salient observations. For example, one focus group member commented that communities of color often seek out information based on trust, such as “information from credible messengers: peers, church pastors and other faith-based leaders, [and] nonprofit organization representatives if they have a particular rapport.”
Another focus group member stated: “In any medical decision-making context, for patients of color, historical trauma and lack of trust come into play.…We need to empower patients to be involved in decision making so they feel like partners in the documentation of their conditions.” Yet another insight garnered by the focus groups was the idea that vulnerable patient populations may often feel disempowered by their interactions with the healthcare system, due to feeling that their lives or capacity to be involved in decision making are undervalued or undermined.
By providing transparent information regarding healthcare, FAIR Health hopes to begin building consumer confidence to effectively engage in SDM discussions related to conditions that are common among patients of color.
With these insights in hand, FAIR Health is proceeding with the next phases of the project: adding cost information from its data repository to three DAs, licensed from EBSCO, for uterine fibroids, type 2 diabetes and slow-growing prostate cancer; initiating the development of educational content around the DAs; and shaping a culturally relevant and comprehensive dissemination strategy that includes extensive organizational outreach. It is anticipated that the decision aids will be available in Spring 2022 on FAIR Health’s award-winning consumer website, fairhealthconsumer.org, and clinician-oriented website, fairhealthprovider.org.