Insights Reveal Utility of Shared Decision-Making Tools with Cost and Clinical Information
NEW YORK, Nov. 29, 2022 /PRNewswire/ — An initiative to advance shared decision making among patients of color in New York State revealed an appetite for this type of discussion among patients and providers and the utility of tools that facilitate such discussions. Shared decision making is the exchange among patients, caregivers and healthcare providers, balancing clinical options and patient preferences to make treatment decisions. The initiative, generously funded by the New York Health Foundation (NYHealth) and undertaken in collaboration with FAIR Health Academic Advisory Board member Chima Ndumele, PhD, offered salient insights as to how patients make decisions and challenges they may face when navigating the healthcare system and managing healthcare costs. These and other insights are included in a brief released today by FAIR Health, Advancing Shared Decision Making among Patients of Color: Lessons Learned from FAIR Health’s Grant-Funded Initiative.
The 18-month initiative resulted in the development and May 2022 launch of four new decision aids for three conditions that disproportionately affect people of color: uterine fibroids (separately, procedures and medications), slow-growing prostate cancer and type 2 diabetes. The tools combine clinical and cost information, and reside in a dedicated shared decision-making section of the FAIR Health Consumer (fairhealthconsumer.org) website. The section also provides educational content about the conditions, patient resources and checklists of potential questions to ask healthcare providers when making healthcare decisions.
FAIR Health promoted the tools through a robust, culturally sensitive dissemination campaign to a variety of stakeholders: providers, patients, community organizations, state and federal departments of health and organizations that serve and advocate for communities of color, among others. The campaign also used Facebook ads to reach consumers and providers. Key program findings, which are further detailed in this report, are summarized below.
Key Program Findings
Feedback from patients and providers was collected as part of the program evaluation. Qualitative and quantitative insights revealed three overarching themes:
Utility and Usability of the New Decision Aids with Cost Information for Shared Decision-Making Discussions
Focus group participants stated that they found the tools “very useful,” and some said they would share the tools with their friends and networks. One patient said that he felt the “fear factor’s going to be gone now, by my point of view” when it comes to making decisions. Another stated that, had she had access to the tools, she would have been able to advocate for herself when struggling with diabetes.
Quantitative data also showed that survey respondents found the tools helpful and user-friendly. According to a survey in FAIR Health Consumer’s shared decision-making section, 80 percent of respondents found that the tools rendered making a decision “easier” or “much easier”; 76 percent also stated that the cost information was “helpful” or “very helpful.” Notably, 76 percent of survey respondents said they would recommend the tools to others.
Utility and Value of Ancillary Educational Content and Resources
Ancillary materials, such as checklists and links to external resources, that complement decision aids may further aid shared decision-making discussions between patients, particularly patients of color, and providers. Feedback from focus group participants demonstrated that the educational content and resources were useful. The patient checklists were a notable resource, with one patient remarking, “I thought the checklists were pretty thorough, and I feel like they’re helpful. And I liked that you could download the printable version of it…I thought [it] was good to have.”
The Importance of Adaptability in a Multilevel Dissemination Campaign
Reflecting feedback from the project’s initial focus groups in July 2021, FAIR Health crafted a grassroots dissemination campaign aimed at a range of healthcare stakeholders. Outreach was conducted to over 75 stakeholder organizations. Given prior success in reaching consumers through Facebook ads, it was decided that Facebook ads might also promote greater awareness and use of the tools to consumers and providers. Facebook ads generated 1,056,657 impressions with a reach of 310,565 individuals and 14,753 link clicks to the tools.
Of the initiative, FAIR Health President Robin Gelburd said, “FAIR Health wishes to thank the New York Health Foundation for supporting this groundbreaking initiative. FAIR Health looks forward to undertaking future initiatives that seek to build on this one by providing actionable information to empower consumers to navigate the healthcare system and manage costs.”
Project collaborator Dr. Chima Ndumele stated, “The project findings show that there is a need for shared decision-making tools and educational content like those offered by FAIR Health through this initiative. Shared decision making is one important strategy, among many, to facilitate equitable access to and use of healthcare.”
Of the tools, NYHealth President and CEO David Sandman said, “Patients, especially people of color, have often been marginalized rather than placed at the center of the health care system. FAIR Health’s decision aids are a step toward a more equitable health care system by equipping patients of color with the clinical and cost information they need to make informed decisions with their health care providers.”
To read the report, click here.
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About FAIR Health
FAIR Health is a national, independent nonprofit organization that qualifies as a public charity under section 501(c)(3) of the federal tax code. It is dedicated to bringing transparency to healthcare costs and health insurance information through data products, consumer resources and health systems research support. FAIR Health possesses the nation’s largest collection of private healthcare claims data, which includes over 38 billion claim records and is growing at a rate of over 2 billion claim records a year. FAIR Health licenses its privately billed data and data products—including benchmark modules, data visualizations, custom analytics and market indices—to commercial insurers and self-insurers, employers, providers, hospitals and healthcare systems, government agencies, researchers and others. Certified by the Centers for Medicare & Medicaid Services (CMS) as a national Qualified Entity, FAIR Health also receives data representing the experience of all individuals enrolled in traditional Medicare Parts A, B and D; FAIR Health includes among the private claims data in its database, data on Medicare Advantage enrollees. FAIR Health can produce insightful analytic reports and data products based on combined Medicare and commercial claims data for government, providers, payors and other authorized users. FAIR Health’s systems for processing and storing protected health information have earned HITRUST CSF certification and achieved AICPA SOC 2 compliance by meeting the rigorous data security requirements of these standards. As a testament to the reliability and objectivity of FAIR Health data, the data have been incorporated in statutes and regulations around the country and designated as the official, neutral data source for a variety of state health programs, including workers’ compensation and personal injury protection (PIP) programs. FAIR Health data serve as an official reference point in support of certain state balance billing laws that protect consumers against bills for surprise out-of-network and emergency services. FAIR Health also uses its database to power a free consumer website available in English and Spanish, which enables consumers to estimate and plan for their healthcare expenditures and offers a rich educational platform on health insurance. An English/Spanish mobile app offers the same educational platform in a concise format and links to the cost estimation tools. The website has been honored by the White House Summit on Smart Disclosure, the Agency for Healthcare Research and Quality (AHRQ), URAC, the eHealthcare Leadership Awards, appPicker, Employee Benefit News and Kiplinger’s Personal Finance. FAIR Health also is named a top resource for patients in Dr. Marty Makary’s book The Price We Pay: What Broke American Health Care—and How to Fix It and Dr. Elisabeth Rosenthal’s book An American Sickness: How Healthcare Became Big Business and How You Can Take It Back. For more information on FAIR Health, visit fairhealth.org.
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