According to the Centers for Disease Control and Prevention (CDC), Americans living in rural areas are more likely to die of cancer than their counterparts in urban settings, which sets them apart from the many communities nationwide that have experienced a 20 percent decrease in cancer mortality over the past two decades. In Appalachia, the cancer picture is bleaker than in other rural parts of the country. Between 1969 and 2011, cancer incidence declined in every region of the country except rural Appalachia, and mortality rates soared.
Last week a collaboration was announced between pharmaceutical company Amgen, the National Cancer Institute (NCI), the Federal Communications Commission Connect2Health Task Force, the University of Kentucky (UK) Markey Cancer Center / University of Kentucky College of Public Health and the University of California, San Diego (UCSD) Design Lab to support the improvement of cancer outcomes.
The L.A.U.N.C.H. (Linking & Amplifying User-Centered Networks through Connected Health) program will use human-centered design methodologies to identify the needs of patients, caregivers and healthcare providers. The program will use these insights to develop and deliver a connected solution for patients to be able to better manage their cancer symptoms. While the project will initially be focused on underserved populations in rural, Appalachian Kentucky, the goal is for it to serve as a model for future symptom management projects across the nation.
“Amgen is excited to be a part of this multi-partner collaboration that taps into the expertise of many cross-functional partners who all have a shared goal of improved cancer outcomes,” said Dr. Peter Juhn, vice president of Global Value-Based Partnerships at Amgen. “What sets this project apart is that we will bring together human-centered design and digital health technologies, enabled by better connectivity, to help improve cancer outcomes through better symptom management.”
“Kentucky leads the nation in cancer incidence, and it’s our responsibility here at UK and the Markey Cancer Center to help reduce the burden of cancer on our citizens,” said Dr. Robin Vanderpool, associate professor of health, behavior & society in the UK College of Public Health and director of Community Outreach and Engagement at Markey. “This unique collaboration will allow us to connect an underserved population to resources that can help patients manage the symptoms that accompany cancer treatment and beyond, ultimately leading to an improved quality of life.”
Initial analysis of broadband data shows that these rural “cancer hotspots” also face major gaps in broadband access and adoption, often putting promising connected care solutions far out of reach.
“The quality, length, and even value of life should not be determined by where you happen to be born or live,” said Ms. Michele Ellison, chair of the Connect2Health FCC Task Force. “And yet that’s exactly what’s happening. Nowhere is this more acutely felt than in the rural parts of our country. Too many rural Americans suffer with late cancer diagnoses, unrelenting symptoms, and inadequate access to care.”
“When patients report symptoms electronically to their care providers they are almost twice as likely to report improvements in health-related quality of life as those without broadband access,” said Dr. Bradford Hesse, chief, Health Communication and Informatics Research Branch, NCI. “Electronically connected patients are also less likely to be admitted to the emergency room and have greater survival rates.”
The collaboration will also benefit from the human-centered design expertise of the UCSD Design Lab. Human-centered design is especially well suited for addressing the complex issue of cancer care.
“By understanding what patients, providers, and caregivers need to better manage cancer symptoms, and by providing them with the mechanism to co-create and customize their own solutions, we anticipate they will experience meaningful care on their own terms and have improved outcomes,” said Dr. Eliah Aronoff-Spencer, professor in the UCSD School of Medicine.