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.
This week (Monday, June 17th, 2019) an Innovation Studio workshop was held at the PRTC center announcing a program called LAUNCH. The L.A.U.N.C.H. (Linking & Amplifying User-Centered Networks through Connected Health) program is a collaboration 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 workshop was well attended by local citizens that are cancer patients, cancer survivors, cancer patient care-givers, academics, or health-care professionals. The challenge for the group was to be “innovative” and think outside the box to facilitate a new “recipe” for providing health care for patients and families that are struggling with cancer. The LAUNCH team sought to empower the collective genius of people from every walk of life to serve their own communities and to transform the future of cancer care. The goal is to develop tools that are accessible to anyone, enabling cancer patients, survivors, or caregivers to innovate solutions to their own unique challenges.
The L.A.U.N.C.H. (Linking & Amplifying User-Centered Networks through Connected Health) program seeks to 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. According to Dr. Melanie McComsey of UCSD the approach involves three critical steps: 1) Listen, 2) Innovate, and 3) Empower. The goal of the Innovation studio was to develop “paper prototypes”, build a coalition, collect pitches & other media and collect feedback.
It turns out that the presence of fiber optic broadband in our county provided by PRTC makes a big difference in cancer care. 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.”
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.
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