By Elizabeth Earl, Peninsula Clarion
A group of researchers is working on a study to take a broad look at how precision medicine could be used to benefit the health of Alaska Natives and American Indian (AN/AI) people in the Lower 48.
Funded with $2.1 million through the National Institutes of Health’s (NIH) Precision Medicine Initiative, the study has three main goals: how precision medicine research may benefit tribal people and align with tribal health priorities, how to return research results to tribal participants and their communities and how to address issues of data stewardship.
Dr. Erica Woodahl of the University of Montana, Vanessa Hiratsuka with Southcentral Foundation (SCF) and Bert Boyer of Oregon Health and Sciences University in Portland are leading the study.
Precision medicine is a term applied to medical treatments tailored to individuals based on their genetic and environmental backgrounds. Former President Barack Obama launched a national Precision Medicine Initiative to advance research on the topic in 2015, focusing largely on cancer.
Within that effort, the NIH committed about $50 million specifically to study health disparities among minorities in the U.S. using precision medicine.
The new study is just one more addition to the ongoing work at CIRI-affiliated nonprofit SCF to understand how genetic and environmental factors play into health outcomes in Alaska Native people, Hiratsuka said.
Her other work includes a study on how diet, exercise, and other lifestyle and cultural activities impact chronic disease and facilitating a conversation with the tribal community on the ethical, legal and social implications of genomic research.
The other public health researchers at SCF are working on a host of projects related to Native health as well, from using text messaging to increase colorectal cancer screening rates to developing interventions to increase alcohol abstinence among AN/AI people.
“We’re an organization that’s very interested in learning from our members,” Hiratsuka said. “As the lead of this project, there are many other things we’re doing to improve (approaches to Native health).”
AN/AI people experience disproportionately high incidences of cancer, earlier death and chronic disease compared to other groups in their regions. In Alaska, cancer is the leading cause of death of Native peoples. From 2009-13, Alaska Native people experienced higher rates of the nine leading causes of death in the U.S. than white populations, according to the Alaska Native Tribal Health Consortium.
Overall cancer rates for AN/AI populations increased from 1990-2009, while rates among white populations went down in the same time period, according to the Centers for Disease Control and Prevention.
Cancer can include a suite of diseases with a multitude of possible factors or causes, some genetic and some environmental, Hiratsuka said.
“When it comes to … multi-health issues like cancer that have a multitude of causes, I think precision medicine becomes a research opportunity,” she said.
Essentially, the study involves collecting data on patients to evaluate how individualized treatment can affect outcomes for specific groups. That data includes everything from electronic health records to data from wearable health devices to genetic information.
That’s why part of the study will include a data stewardship component, Hiratsuka said. Health information is sensitive and tightly guarded under the restrictions of the Health Insurance Portability and Accountability Act, or HIPAA, and who is authorized to have what data tends to be fairly fragmented within the medical system.
“We’re working on several deliverables — what the return of results to an individual might look like, and results being returned to a provider as well,” Hiratsuka said. “Who among that team has access, where that information might be stored and what might be actionable.”
As sovereign entities within the U.S., each Tribal group or nation has a health organization. Part of the study also considers how to incorporate the research and health outcomes into the tribal health organizations’ goals.
SCF is already involved in personalized health care delivery through its Nuka System of care. The system, which received the Malcolm Baldridge Quality Award in 2017, places patients at the center of a care continuum designed to prioritize relationships.
SCF refers to patients as “customer-owners,” a term that frames them both as purchasers of health care services that come first in service but also puts them in charge of their own wellness, Hiratsuka said.
The researchers are currently in the second year of work on the study.