Creating a community-led telehealth approach for supportive cancer care

Cancer is a life-changing diagnosis for the patient and everyone in their orbit. Treatment of this deadly disease is all-consuming and filled with uncertainty, because of which cancer patients are at risk of experiencing mental health and other psychosocial challenges. While integrated support services have been shown to help cancer patients in their arduous journey, barriers to accessing them persist. Healthcare provider organizations are working to close these access gaps through virtual care technologies.

Though there have been some significant wins against cancer in the last few decades, the American Cancer Society projected 1.95 million new cancer cases and 609,820 cancer deaths in the United States in 2023. The National Cancer Institute expects overall cancer prevalence in the US to reach 26 million in 2024, up from 18.1 million in 2022.

Virtual care technologies like telehealth and remote patient monitoring can extend cancer care access. While some health systems are using these technologies to manage the clinical outcomes of cancer patients, others are using them to provide supportive care services, like nutrition services and counseling.

An independent oncology practice in Tennessee recently launched an effort that aims to implement virtual care tools in rural areas to provide access to oncology-related supportive care services.

Through its new NEST (Navigated, Embedded, Supportive Care, Via Telehealth) project, Tennessee Oncology will collaborate with the community to establish a telehealth approach for three supportive care services in Middle Tennessee. The project, supported by a $1.5 million Practice Transformation and Extension grant from the Tennessee Department of Health, will focus on mitigating digital divide barriers that curb access to supportive care services shown to boost cancer patients’ quality of life.

SUPPORTIVE CANCER CARE SERVICES GO VIRTUAL

With the onset of the COVID-19 pandemic, telehealth became a critical component of healthcare service delivery in various specialties, including palliative and other supportive care. Palliative and supportive care in oncology was prime for the shift to digital healthcare.

“When telehealth became a modality of ease for everyone, it helped us a lot because all of a sudden now the patients could be at home on their not treatment day, when they don't have an oncology visit, and we can see them at home in their comfort zone and really dive into what is going on with them in terms of their symptoms, their emotional state, who's their support system,” said Sandhya Mudumbi, MD, medical director of Tennessee Oncology’s palliative care program and program director for the NEST project, in an interview with mHealthIntelligence.

However, Mudumbi and her team soon saw that while the uptake of telehealth-enabled supportive care was growing in urban and suburban areas, rural patients were falling behind.

Between 2016 and 2020, there were 457.7 cancer cases per 100,000 people per year in Tennessee, according to data from the National Cancer Institute. Of these, 122.4 cases per 100,000 people were breast cancer cases, and 116.1 cases per 100,000 people were prostate cancer cases.

In 2022, when Tennessee Oncology was putting together requests for the state department of health grant to fund the NEST program, they found that only 2 percent of breast and prostate cancer were getting palliative care.

“That's when we really started digging into what's going on,” Mudumbi said.

One of the primary reasons for this lack of uptake was that the rural communities were facing significant challenges resulting from the digital divide. 

“I'll see somebody walk in, and I'll offer to them, ‘Hey, next time I could see you through telehealth,’” Mudumbi said. “And then I'm like, wait, but you do have to have a smartphone. And then they'll pull out their flip phone, and I feel crazy talking to them about telehealth when there's such a divide.”

Even when the patient has the devices they need, they may not be able to use them due to a lack of technology literacy, she added.

Additionally, rural Tennessee faces broadband and cellular signal challenges. According to Mudumbi, one patient said they did not have a strong enough cellular connection for audio-only care services.

The Tennessee Oncology team decided to launch the NEST project to combat these digital divide issues and expand telehealth access to supportive services. But they couldn’t do it on their own.

DEVELOPING THE TELEHEALTH-BASED NEST PROGRAM

The NEST program aims to expand access to palliative care, psychology, and integrative oncology and nutrition services among rural cancer patients in seven Middle Tennessee counties: Robertson, Dickson, Putnam, Dekalb, Warren, Bedford, and Coffee counties.

According to Mudumbi, palliative care teams aim to enhance an individual's quality of life as they're going through their cancer journey. Palliative care includes medication-based and non-medication approaches, as well as advocating for the patient's values and goals and helping transition patients from hospitals back to their homes. Supportive psychology teams offer therapy and counseling to cancer patients, their families, and caregivers. Integrative oncology and nutrition teams focus on nutrition and lifestyle changes and other complementary ways to improve patients’ quality of life that integrate with evidence-based cancer treatment.

“In an oncology practice, the oncologists are so busy navigating the complex landscape of treatment, and so it really does take a whole separate team to focus in on who the person is, what they value, what are they dealing with physically, emotionally, spiritually,” said Mudumbi. “It takes that whole separate team to now focus on who they are and to advocate for them and represent them in this whole journey of having cancer.”

However, given the care access and digital divide challenges rife in rural communities in Tennessee, patients often cannot access these supportive services. Thus, a hallmark of the NEST program is its community-based participatory research approach to creating a virtual pathway for accessing the services.   

“In a lot of research and public health interventions, sometimes it's very one-directional,” said Mudumbi. “Somebody finds a problem, and they think they have a solution, and they want to go test it out without considering who the end user is, the people that it's serving. What's really unique is this method, called community-based participatory research, is that we're going to the community that we're serving and respecting their wisdom from their lived experience, and they're going to now inform the development of the whole program.”

The first step in program development is creating community advisory boards. The project will include three boards comprised of breast and prostate cancer patients, survivors, caregivers, and cancer care advocates, Mudumbi said. These boards will help the Tennessee Oncology palliative care team define the virtual care access problem and help shape the solution.

For instance, one of the potential solutions is integrating telehealth navigators into the telehealth stations set up at Tennessee Oncology’s local satellite clinics.

“So, we kind of have a solution in mind, but we really want our community advisory boards to shape the whole thing from A to Z, including evaluating it and sustaining it,” Mudumbi said.

CONNECTING WITH THE COMMUNITY

The NEST project will be implemented through Tennessee Oncology’s McKay Institute for Oncology Transformation over the next two years. Currently, the focus is on establishing community-based advisory boards, but Mudumbi noted it’s a slow process.

“Because it's relationship building,” she said. “We're building relationships with people that are in those counties and communities. And so yeah, it takes a long time… But it's also extremely rewarding because people really value it when you ask them their opinions about this project that we're doing.”

Once the boards are formed, Mudumbi and the NEST team will conduct board meetings. They will also recruit focus groups, who are primarily breast and prostate cancer patients.

The program will take shape based on the feedback from the meetings and focus groups. Once the program has been developed and approved by the groups involved, Tennessee Oncology will implement the NEST program and evaluate it thereafter.

To evaluate the program's efficacy, Mudumbi and her team will examine various health metrics, such as quality of life and depression and anxiety symptoms, in addition to patient satisfaction.

Further, Tennessee Oncology will collaborate with experts at the University of Alabama at Birmingham throughout the program development process to glean insights into the intricacies of the community-based participatory research method.

The practice will expand the NEST program in 2026 to include other cancer types and communities, after which the focus will be on sustaining the program.

Mudumbi sees infinite potential in using telehealth and other virtual care technologies to improve access to cancer care beyond the clinical aspects of the patient journey, particularly for rural and underserved populations.

“Health technology is growing so much, especially in cancer care, to improve upon so many different facets of the cancer journey that if we really get people to engage in our rural communities, I feel like there's just so much possibility,” she said. “There's just so many different applications to this that really could provide greater access to more comprehensive care if it works, if it is truly sustainable and acceptable to these communities.”