ASCO in the Community: Listening and Learning From Our Patients in Appalachia

ASCO in the Community: Listening and Learning From Our Patients in Appalachia

Guest Commentary

Aug 24, 2018

By Electra D. Paskett, PhD, and Colin D. Weekes, MD, PhD

2018-2019 ASCO President Monica M. Bertagnolli, MD, FACS, FASCO, is putting the words of her presidential theme—“Caring for every patient, learning from every patient”—into action. During her term, she and other ASCO leaders will be traveling to local communities around the United States to moderate question-and-answer sessions with patients, survivors, caregivers, and oncology professionals. Providers will provide expert answers to patient questions and learn about the vital needs of patients in these communities. Members who participate in these town hall sessions, “ASCO in the Community: Listening and Learning From Our Patients,” will share the knowledge they’ve gained in a series of blog posts throughout the year. They will also share takeaways for patients on Cancer.Net, ASCO’s patient information website. This post details the lessons learned from the first town hall, which took place in Marietta, OH, in August 2018.

Dr. Bertagnolli joined the Quality Talk podcast to discuss quality issues in health care, including her listening tour. Listen to the podcast and read highlights of the discussion.

What was your role in the town hall?

EP: I helped arrange the town hall and other discussions with patients and providers, as I have conducted research and worked with the Appalachian community members since 2003.

CW: I was present as a representative of ASCO and a guest of the health care providers of Appalachia and Dr. Paskett. I was on the panel of speakers at the town hall meeting along with Dr. Bertagnolli.

What is the cancer landscape in rural Ohio, where the town hall took place?

EP: The Appalachian area is a federal-designated area with areas of high poverty and low resources, including health care. Demographics in the Ohio Appalachian area (compared to the overall U.S. population) are low income, high poverty, lower education, white, higher smoking, higher cancer incidence and mortality rates, higher obesity, lower physical activity, etc. Challenges include low resources, transportation issues, long distances to travel for care, lack of access to high-speed internet and connectivity, not all specialties available locally, and inability to always provide charity care to all who need it.

CW: This is a rural part of the United States with limited opportunity for jobs and education. This is a very poor part of the country where resources for health care and overall life are very limited. This makes obtaining the appropriate cancer care a challenge. This ranges all the way from cancer screening to cancer therapy. The people of the area are very proud and self-motivated with a strong sense of “family”—nuclear family as well as the larger community as a whole. This is a double-edged sword, as there is a reluctance to trust and seek the help of non-Appalachian individuals.

In today’s society, there is the mindset of a “quick fix”; however, true impact on cancer care in Appalachia has taken a sustained effort now going on 2 decades.

The biggest challenge to providing/accessing high-quality cancer care is economics. The individual does not have the finances to seek out optimal care and the health care system lacks resources to develop basic programs to help the people of the area. I was struck by the fact that a county health care center that we visited needs $3,000 to make infrastructure repairs to the building as part of the maintaining accreditation and was concerned about trying to find the money. $3,000 is a lot of money when you don’t have it but is a small amount of money when considering the larger health care economy. This made me think about how we can more effectively utilize health care dollars. In other words, a little can go a long way when allocated in an appropriate manner. In this particular case, it would be devastating for the county if this health care center lost its accreditation. The health care worker at that facility was so dedicated to the patients and the people she served. This was a common theme amongst all of the facilities that we visited.

What were your key takeaways for medical professionals from the town hall and discussions?

EP: The town hall was very enlightening for patients, community members, and providers. Community cancer centers do provide care for the majority of patients in this region. Patients, however, still have barriers to care, including financial, transportation, information, and more. Even if these barriers can be addressed, disparities may increase with newer treatments that are only available outside of tertiary centers.

Community cancer centers should form a network locally to work together to solve problems and obtain assistance from university-based centers to help them be able to comprehensively treat patients in the community, including patient-directed resources.

CW: This visit solidified some ideas that I had going into the experience as well as provided me with exposure to new thoughts. To me, communication remains the most effective way to the combat health care discrepancy. The health care provider must be able to effectively communicate with the patient in order for the patient to be empowered to obtain the best possible health care within the circumstances of their lives. The patient has limited resources and has to allocate those as best they can to meet all of the demands of life. This communication also provides comfort to the patient to share their life experiences with the health care providers, which in turn allows the health care provider to begin to understand what the patient’s life is like outside of the clinic. Ultimately, this interaction will help health care providers understand what is needed to help their patient population. Effective communication is also required for health care providers to interact with policymakers to advocate for their patient population and obtain necessary economic resources to fund projects that will help their patient population.

We must not be afraid to ask the question “why”! I learned a tremendous amount during my time in Ohio by simply asking, “Why?”

It is my sense that there is common methodology on how to approach and help underserved patients irrespective of their ethnic/socioeconomic backgrounds. However, the manifestation of the approach needs to be tailored to the patient population being served.

There is a need to develop more patient-centric method of practicing oncology.

This was a very powerful learning experience demonstrating why it is important for ASCO to focus its efforts on providing optimal cancer care to all potential patients and the various shapes this may take depending on the patient population being served throughout the world.

Dr. Paskett is the Marion N. Rowley Professor of Cancer Research at The Ohio State University (OSU). She is the director of the Division of Cancer Prevention and Control in the College of Medicine, a professor in the Division of Epidemiology in the College of Public Health, and the associate director for Population Sciences and Program Leader of the Cancer Control Program in the Comprehensive Cancer Center of OSU. She is the director of the Center for Cancer Health Equity at the James Cancer Hospital. She conducts intervention research directed at cancer prevention, early detection, and survivorship issues, with a particular focus on disparities among underserved populations such as social and ethnic minority groups and rural/underserved populations. She is a member of the ASCO Survivorship Care Plan Working Group.

Dr. Weekes is director of Medical Oncology Research for Pancreatic Cancer at Massachusetts General Hospital. He conducts early-phase therapeutic clinical trials in patients with gastrointestinal malignancies with a focus on pancreatic cancer. He is the 2018-2019 chair of the ASCO Annual Meeting Education Committee, and is a graduate of the ASCO Leadership Development Program.

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