The clinicians and scholars immersed in palliative care at Dartmouth-Hitchcock (D-H) and the Geisel School of Medicine have a vision: a world in which everyone facing a serious illness or a sudden life-threatening event receives personalized care that results in the best possible outcomes. The path to realizing this vision begins with a better understanding of the impact of palliative care on the experience of patients, their families, and their caregivers. Currently, limited data about this experience are available.
That’s about to change. Thanks to a grant from the Gordon and Betty Moore Foundation, D-H and The Dartmouth Institute for Health Policy and Clinical Practice have begun collaborating with the American Academy of Hospice and Palliative Medicine (AAHPM) on the creation of a palliative care learning health system. “A learning health system allows clinicians to learn from each other, provide the best evidence-based care to their patients, and contribute evidence to help others in the future,” explains Eugene Nelson, DSc, MPH, professor of community and family medicine at Geisel and The Dartmouth Institute and principal investigator on the project. Researchers from The Dartmouth Institute have generated similar frameworks for cystic fibrosis, inflammatory bowel disease, and rheumatoid arthritis that have led to significant improvements in health outcomes and patient experience.
The three-year palliative care project will involve the development of tools to aid communication between patients, families, and clinicians; the rollout of those tools at D-H; and sharing the tools with other palliative care centers across the country by working with the AAHPM.
In the first phase of the project, the research team—including Nelson and co-principal investigators Amber Barnato, MD, MPH, MS, the Susan J. and Richard M. Levy 1960 Distinguished Professor in Health Care Delivery at Geisel, and Kathryn Kirkland MED ’86, the Dorothy and John J. Byrne, Jr., Distinguished Chair in Palliative Medicine at Geisel and section chief and director of the palliative medicine program at D-H—will codesign the communication tools with patients, families, caregivers, and health care professionals. An electronic information-gathering tool that links to patients’ health records will enable patients and their health care teams to focus each office visit on the most critical needs, priorities, and concerns. A facilitated support network will give patients and their families both in-person and online resources for sharing knowledge and experiences with others facing similar challenges.
“The information we gather while patients and families are using tools like these allows us to learn as we go and make ongoing improvements in care, so we can keep making things better for seriously ill patients and their families,” says Kirkland.
“When we start to see why one patient group is doing better than another, or what works well for what kind of patient, clinicians can offer the best possible care,” adds Nelson.
People in the D-H palliative care program will be the first to test the tools, followed by D-H patients and health care teams in another area, such as oncology or cardiology. Finally, through a close partnership with the AAHPM and its Palliative Care Quality Collaborative, the tools will be tested at a medical center outside of D-H.
“We’re invested in the care of patients with serious illness, and incredibly grateful for the funding that enables us to conduct this research.”
—Amber Barnato, MD, MPH, MS, the Susan J. and Richard M. Levy 1960 Distinguished Professor in Health Care Delivery
The Gordon and Betty Moore Foundation’s work in serious illness care is aimed at improving the experience and outcomes of people with multiple chronic conditions and who have limited ability to perform everyday tasks, such as eating, bathing, and dressing.