ACS CARES: Assessing Health-Related Social Needs to Personalize Patient Navigation

Nobody is fully prepared to hear the words, “You have cancer,” said to either themselves or a loved one, even for those of us in the medical field. For the 1.9 million people expected to be diagnosed with cancer each year, life becomes fundamentally reshaped around those three words, with important details to learn and major decisions to make. At the same time, there are also practical matters to sort out — arranging transportation to appointments, figuring out care for children or assistance for an elderly parent, managing other day-to-day responsibilities, affording out-of-pocket costs.

Countless non-medical factors can impact a person’s cancer journey and quality of life. At the American Cancer Society (ACS), we’re committed to supporting people with cancer by addressing these health-related social needs and removing barriers to care.

Scientific advancements are making personalized medicine possible, and we feel that cancer support should be personalized, too. That’s why we’ve created a new program for patients, ACS CARES (Community Access to Resources, Education, and Support), which leverages technology to provide support and resources that are tailored to each person’s individual needs.

As the saying goes, we don’t know what we don’t know. Most of us aren’t familiar with moving through the health care system, and don’t even know what questions we should be asking. In the absence of good information, patients might feel unprepared to make decisions or uncertain about the decisions they do make. That uncertainty can lead to regret, especially if a treatment doesn’t go as well as a person was hoping.

Our goal with ACS CARES is to systematically identify each person’s obstacles to receiving high-quality care, then target and address them. To do that, we’ve designed a comprehensive assessment based on the NCCN Distress Thermometer and Problem List, a widely respected tool for identifying relevant concerns for the cancer population. In addition to a sociodemographic section, our assessment is structured into four sections focusing on practical, emotional, physical and spiritual concerns. As users go through the assessment, their responses lead to other related questions, helping us drill down deeper to the specific information or resources they need.

Once we know the challenges a person is up against, we can offer potential solutions. Our ACS CARES app pulls together a personalized dashboard for each user showing relevant, vetted information for their questions — resources on Cancer.org, for example — and various forms of support for their needs.

Sometimes a patient is facing logistical hurdles that could affect their quality of care, such as not owning a car or not being able to drive. Another patient might live far enough away from their hospital or clinic that the travel time back and forth is substantial. Through ACS CARES we can connect patients and caregivers to resources available, like ACS Road to Recovery and ACS Hope Lodge communities, in addition to non-ACS programs, that can help meet their needs.

Beyond help with practical matters, we recognize that it can be enormously helpful to interact with another person who has gone through a similar experience. That’s why this week, we are launching a team of ACS CARES community volunteers available for one-on-one messaging within the ACS CARES app, who will be matched up with app users based on similar personal experiences. This can include shared lived experience as a caregiver, of an adult or someone under the age of 18 with cancer, navigating cancer while living in a rural or urban area, as active-duty military or Veteran, or based on specific cancer type.

In addition, we’ve recently launched in-person support from undergraduate and graduate student volunteers at pilot sites at MUSC and College of Charleston in Charleston, South Carolina; the University of Iowa in Iowa City; and UCLA in Los Angeles. These trained ACS volunteers provide navigation support and can assess a patient’s needs in the same level of detail as the ACS CARES app. Not only can they help identify a person’s concerns and find resources for them, they also stay in touch during that person’s cancer journey, following up with them to assist with additional needs as they arise. We expect to expand this program to nine more sites in 2024, with a specific focus on reaching rural populations, facilities that serve Hispanic populations, and areas near historically Black colleges and universities as these communities have historically been underserved by the medical community.

We’ve taken special care to make these resources accessible through various avenues, since everyone has a preferred way of digesting new information. For those who prefer a digital approach, our app serves as a great starting point. If it’s easier for a person to call a number and talk to someone, we offer that option as well. 

As proud as we are of what we’ve built so far, we’re committed to continued innovation. We want to be at the forefront in adapting our services along with new treatment advances and other changes in health care. In 2024 and beyond, ACS will stay connected to both our technology and health care partners and the communities we serve to keep the needs of patients and caregivers front and center and address these needs in the most effective way possible. If you or your organization would like to learn more or engage with ACS, visit cancer.org/becomeapartner.