Shared Decision-Making Tools Empower Older Adults, Caregivers

McKnights Home Care

By: Robin Gelburd

Adults aged 65 and older make up a rapidly growing segment of the U.S. population due in part to advancements in healthcare. However, older adults and their caregivers continue to face challenges when navigating the healthcare system. Research suggests that the lack of coordination between healthcare providers, inadequate guidance and low health literacy are barriers to accessing high-quality care among older adults, often leading to fragmented care and higher treatment costs. Although older adults shoulder a significant portion of their healthcare costs, they do not always get the care that they prefer.

Research conducted by FAIR Health further suggests that while older adults prefer to know their healthcare costs, they rarely discuss costs with their healthcare providers. Likewise, family caregivers and care partners, who assume a wide range of responsibilities related to care coordination and direct care, may lack access to the resources and training necessary to help them navigate the healthcare system and manage costs on behalf of their care receiver.

Shared decision-making, which involves discussing and deciding on treatment and care based on clinical evidence and patient’s preferences and values, shows promise for engaging older patients and their caregivers in healthcare decisions and reducing unnecessary spending and healthcare costs. In keeping with our mission to advance cost transparency and empower consumers, FAIR Health has undertaken several initiatives to develop tools that combine both clinical and cost information for various health conditions that affect older adults and other vulnerable populations.

In 2022, as part of an initiative that was supported by The John A. Hartford Foundation, FAIR Health launched five new shared decision-making tools that combine clinical and cost information on different treatment options for early-stage breast cancer, fast-growing prostate cancer, hip osteoarthritis, hip replacement and spinal stenosis. Like other decision aids in FAIR Health’s repository, the newly developed decision aids combine clinical information from EBSCO’s OptionGrid™ decision aids and cost data from our private healthcare claims database comprising over 40 billion claim records from 2002 to the present.

In addition, FAIR Health launched three new total treatment cost scenarios highlighting the range of costs in a year for three conditions relevant to older adults: Alzheimer’s disease/dementia, heart failure and major depression. Accompanying the tools is a rich array of educational content, links to external resources and checklists with questions for patients and caregivers to ask providers. The tools, educational content and resources are offered in a dedicated section on FAIR Health’s free, award-winning, national consumer website,, which is available in English and Spanish.

To raise awareness of the tools, content and resources, FAIR Health launched a robust dissemination campaign that targeted a wide range of stakeholders (e.g., older patients, family caregivers, healthcare providers, policy makers, researchers and community-based organizations) in four geographic markets: New York, Atlanta, Los Angeles and Chicago, IL. Information about the initiative and its findings can be found in this brief.

Program findings

Feedback provided through surveys and focus groups with older patients, family caregivers and providers points to the benefits of FAIR Health’s tools, content and resources. Chief among these benefits is the potential for the tools and, to a larger extent, shared decision-making to serve as vehicles for patient empowerment. Sixty-seven percent of survey respondents said that using the tools and resources made them feel that they could take part in shared decision-making with their healthcare team or provider. Moreover, 65% said that the newly developed section for older adults helped them to better understand how to manage their healthcare costs. Of the tools, content and resources, one provider stated, “It’s very promising because it really gives them decision-making capability so they can compare and know what they’re going to be paying out of pocket, how much money they’re going to spend …”

Most survey respondents and focus group participants found the tools helpful for developing their knowledge of shared decision-making, understanding their healthcare costs and navigating the healthcare system. Ancillary materials in particular — such as checklists and links to external resources — have been of strong interest to both groups. When asked which features were most helpful for their decision-making, many survey respondents chose resource links to external organizations and websites (48%) and FH® Healthcare Toolkit checklists and articles (39%). Likewise, some survey respondents stated that they found the checklists helpful in managing their stepwise approach to accessing care.

Program findings indicate a growing appetite and appreciation for shared decision-making tools with cost information and related resources. However, more work needs to be done to increase consumer and provider awareness of the tools and test their integration in clinical settings. To that end, FAIR Health will continue to investigate and educate regarding the broader dissemination of shared decision making in diverse settings.

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