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Addressing Health Literacy through Technology
January 24, 2024
A mobile app is one tool being used by C4 patients to monitor and address gaps in care caused by low health literacy.
They say knowledge is power, and when you are coming to terms with a cancer diagnosis, knowledge is everything. Patients and caregivers alike are faced with an overwhelming amount of information regarding diagnostic testing, treatment options, available resources and financial implications that come along with the words, “you have cancer.” The degree to which a patient can accurately understand, communicate and make informed health care decisions using this type of information is known as health literacy. And, it plays a crucial role in health outcomes.
Individuals and populations that experience health disparities are more likely to have low health literacy, which in turn can impact a patient's ability to navigate an already complex health care system, understand and follow medical instructions, and determine the best care plan for themselves or a loved one, while accessing additional resources or support needed.
Expanding health literacy through the Comprehensive Connected Cancer Care (C4) Program
Addressing health literacy is particularly important for University of Kentucky Markey Cancer Center (Markey)’s cancer population, many of which reside in rural or low-income areas. Nearly half the state of Kentucky is designated as an Appalachian Region, which has reported significant health care disparities and groups negatively affected by social drivers of health. Geographic disparities within the state include elevated incidence and mortality among rural and Appalachian counties for all cancer sites (overall) and for lung and colorectal cancers.
Supported by the Alliance for Equity in Cancer Care (Alliance), Kentucky’s Comprehensive Connected Cancer Care (C4) Program is enhancing the delivery of and access to patient resources and health information for patients and caregivers through using a comprehensive approach. The program includes a developing mobile application for patients, navigation dashboard, enhanced patient navigation services and integrated workflows inclusive of educational modules for clinical care teams, patients and caregivers.
The developing mobile app is one tool being used to monitor and address gaps in care caused by low health literacy. By centralizing patient resources and education materials in a way that’s easy to navigate and using plain language guidelines, Markey can better reach audiences with lower levels of literacy. The app is specifically designed to complement the work of existing care teams at the provider and health system level. For Markey, that includes the Psych-Oncology team of social workers and patient navigator, alongside clinical care teams.
Incorporating diverse, multi-level feedback to optimize the user experience
The C4 Program was designed with the patient in mind, from initial design concepts to ongoing user feedback. Markey’s patient advisory group represents the program’s focus population: individuals from rural, Appalachian, Black, low-income and other underserved populations with high social needs. Ongoing input ensures a positive experience for patients. Whether an individual is looking for community-based services or education materials, the patient experience is paramount in the app’s ongoing development. Co-design studios and usability interviews are also being conducted to identify what’s most important to patients and caregivers when using a mobile app to address social needs.
A clinical collaborator committee, which includes clinical and operational leadership, oncology and nursing leadership, social workers and patient navigators, provides critical insight into how the technology can enhance and expand existing care services and navigation efforts in a sustainable way.
Using technology to optimize the navigation workflow
Patients participating in the C4 Program will be introduced to the technology by a patient navigator, who will guide the patient through downloading, accessing and signing into the app. Users will be prompted to view a brief tutorial showcasing the app’s features and functionality, including a patient dashboard, personalized referrals, navigation support and educational materials, all fully integrated within the Psych-Oncology team’s redesigned workflow.
Individuals can complete their first app-based psychosocial distress assessment and select any self-identified “social needs” such as transportation, financial concerns or food and housing insecurity. The distress assessment serves as an important tool to identify barriers to accessing care with built-in notifications for care team members to address additional support or resources needed. Navigators will view a customized C4 dashboard to view navigation caseloads and manage individual patient needs and communications. The patient intervention focuses on patient-centered cancer care at all levels. This effort, supported by partner sites, meets the Commission on Cancer (CoC) standards for distress screening and removing barriers to care.
Advocating for health literacy through the Alliance
A key component of the Alliance is working with community partners. Partnering community-based oncology programs within the Markey Cancer Center Research Network will deploy the app for C4 patients, in collaboration with the Kentucky Cancer Program, Kentucky Cancer Consortium and non-profit organizations, as a way to increase access to community resources and health information, which could improve patients’ health care experiences. The app will also increase the awareness of community-based resources, programs and services available to cancer patients and caregivers.
The hope is to continue to improve how patients and providers communicate. “I wish this app had been available when I got my cancer diagnosis,” shared a member of the patient advisory group.
As the Markey team gains a deeper understanding of how to measure and address social drivers of health through technology and the C4 Program, these efforts are helping shed light on the importance of health literacy for other Alliance grantees and community partners alike.
Written by: Alliance National Program Office