Advancing Shared Decision-Making for Patients of Color in New York State

Grantee Name

FAIR Health

Funding Area

Empowering Health Care Consumers

Publication Date

May 2023

Grant Amount

$145,272

Grant Date:

May 2021 – November 2022

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For NYHealth, health equity is achieved when all people have the opportunities and resources they need to be as healthy as possible and no one is disadvantaged.

But in practice, patients—particularly people of color—are often marginalized rather than placed at the center of the health care system. Although all patients should be valued as partners, patients of color can face unique obstacles, including racism, bias, mistrust, and gaps in communication between patients and physicians. Engaging patients of color is an important step toward the development of a more equitable health system. To help ensure that patients’ priorities, preferences, and experiences guide efforts to create a more equitable health care system, NYHealth issued a Request for Proposals (RFP), “Patients as Partners: Advancing Equity.” Through this RFP, NYHealth is supporting projects that seek to implement system improvements, practice innovations, or interventions designed to give patients of color a meaningful role in their health care. In 2021, NYHealth awarded FAIR Health a grant to participate in this initiative.

Under this grant, FAIR Health piloted shared decision-making approaches that were especially relevant to patients of color. Shared decision-making—the process by which patients and providers decide on treatment, balancing clinical options with patients’ needs, values, and preferences—can better engage patients as partners in their health care and shows promise for improving health outcomes and reducing health care costs. In collaboration with Dr. Chima Ndumele, an Associate Professor of Health Policy at the Yale School of Public Health and a Faculty Associate at the Institute for Social and Policy Studies at Yale University, FAIR Health developed and disseminated shared decision-making tools that combined clinical information and cost data drawn from FAIR Health’s private claims repository. The project team conducted focus groups with patients and providers of color to identify health care conditions that were particularly important to communities of color: slow-growing prostate cancer, Type 2 diabetes, and uterine fibroids. Focus groups led FAIR Health to replace the originally anticipated topic of early-stage breast cancer with Type 2 diabetes because patients of color identified a greater need for shared decision-making support for this health issue.

FAIR Health also engaged patients and providers to test the tools and ensure they were culturally sensitive and relevant in addressing the most pressing needs and concerns of patients of color when navigating the health care system. A broad range of New York State health care and community partners—including patient advocacy groups, survivor groups, hospital systems and associations, medical societies, and individual health care providers of color—were engaged to promote and use the tools in practice. FAIR Health disseminated the tools on its websites, FAIR Health Consumer and FAIR Health Provider, through social media, and with patient ambassadors and champions. Additionally, FAIR Health developed and shared a report to describe patients’ and providers’ perceptions of the tools and highlight key program learnings.

Outcomes and Lessons Learned

Under this grant, FAIR Health:

Created patient decision aids discussing various treatment options for conditions that disproportionately affect patients of color.
Drove more than 29,000 unique visits to the shared decision-making tools on the FAIR Health Consumer and FAIR Health Provider websites through media engagement, outreach to patient advocacy and provider organizations, and consumer- and provider-oriented Facebook ads.
Featured the decision aids tailored to patients of color during a FAIR Health webinar on its suite of shared decision-making tools.
Published a brief with the results of a qualitative and quantitative evaluation of the tools. Among the findings:
- 80% of patients surveyed felt the tools made their treatment decisions easier.
- 76% of patients surveyed found the cost information helpful.
- The tool for Type 2 diabetes was most frequently used by respondents, with 50% indicating they used it.
Disseminated the tools to a range of stakeholders through articles in Crain’s Health Pulse and Patient Engagement HIT, as well as presentations at the Movement is Life 2022 National Caucus.

Program findings indicate that consumers have an appetite for these types of decision aids, especially those with cost information. Moreover, ancillary tools, such as discussion checklists and educational resources on health conditions, can be helpful for contextualizing the information provided and facilitating shared decision-making with providers.

FAIR Health made effective adjustments to its project implementation when obstacles arose. For example, FAIR Health initially planned to share the tools through multiple channels, including through train-the-trainer sessions for health care providers and community organizations. Given the myriad challenges facing provider and community organizations during the COVID-19 pandemic, FAIR Health adapted its dissemination efforts and instead focused on increased social media promotion. Facebook ads connecting directly with consumers and providers proved particularly effective at promoting uptake of the tools; they drove more than 16,000 clicks on the shared decision-making webpage, constituting more than two-thirds of total uptake.

Co-Funding and Additional Funds Leveraged: With nearly $350,000 in support from other foundations, in addition to its own in-kind contributions, FAIR Health has created shared decision-making tools tailored to other priority populations and offered the resources on its consumer- and provider-facing websites. FAIR Health has created decision aids for individuals with serious illnesses with support from The New York Community Trust and for older adults with support from The John A. Hartford Foundation. The Fan Fox and Leslie R. Samuels Foundation provided support for the development and dissemination of the FAIR Health Provider website.

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