Researchers from UC Davis Health recently partnered with Amgen Inc. on two projects to better understand the decision-making processes and educational needs of patients, providers and family caregivers to develop solutions that meet the needs of people facing serious illness.
UC Davis Health and Amgen are collaborating to identify mutually beneﬁcial opportunities to improve patient care, leveraging Amgen’s therapeutic expertise and the research, academic and clinical expertise of the Betty Irene Moore School of Nursing at UC Davis and the UC Davis School of Medicine. During the initial phase of the projects, researchers from UC Davis will study the experience of patients diagnosed with multiple myeloma and patients with acute lymphoblastic leukemia using continuous intravenous infusion immunotherapy.
“If we’re going to design solutions for how individuals manage complex, acute therapies in their homes, we must understand how they experience the diagnosis, its treatment regimen and questions when issues arise,” said Katherine Kim, an assistant professor at the School of Nursing and principal investigator of the project. “This research is about making sure we know enough of the stakeholders’ experience to design solutions that work for patients, caregivers, nurses and physicians.”
In one of the two projects, Amgen and UC Davis are both looking to gain an in-depth understanding of the educational and instructional needs of patients with acute lymphoblastic leukemia who use a new category of therapies that enhance a person’s immune system to fight cancer cells. Individuals in treatment require a constant infusion of medications for up to six weeks, the first nine days in an inpatient setting followed by five weeks at home.
“These individuals are taking what used to be a nursing task in the hospital — the administration of an expensive drug with a complex method of delivery — and hope the patients and their families can juggle the physical, social and emotional context that comes with it,” Kim added. “How will they handle it? Where will they go for educational help if something goes wrong? Collaboratively, we are seeking to better understand real-world patient needs, perspective and experiences.”
The second project in this initial phase of the partnership seeks to better understand the conversation between providers and individuals diagnosed with multiple myeloma, a rare cancer of the blood. This research is mutually beneficial because both partners want to understand how patients gather information about their disease, if they understand that information and whether it supports the conversations patients have with their providers. Research indicates that physicians are making treatment decisions on behalf of their patients based on their perception of what a patient will tolerate, or the perceived desired quality of life. To support disease awareness and/or management initiatives, access to high quality care and shared decision making, it is important to understand how information is accessed and treatment decisions are made by patients, family members and clinicians across geography and practice settings.
“UC Davis is a natural partner in this work because of the vast expertise of the teams at the Family Caregiving Institute at the Betty Irene Moore School of Nursing and the Healthy Aging in a Digital World initiative,” said Peter Juhn, a physician and vice president leading Amgen’s Global Value-Based Partnerships. “When combined, our knowledge and expertise can close the scientific gaps that exist. Our mutual goals for this partnership are to benefit patients, identify new technological solutions, improve outcomes and lower overall costs.”
Since, most likely, any type of intervention will require a technology solution, work from the multidisciplinary team in the Healthy Aging in a Digital World initiative will lend insight and expertise into this work. That initiative is one of UC Davis’ Big Ideas envisioning a world where personal devices, home monitors and mobile apps empower people to drive their health and where connectivity to family and providers generates knowledge that informs practice. Currently, they conduct a landscape assessment of digital technologies that support patient self-management. Once researchers on this project identify specific challenges faced by individuals with multiple myeloma and acute lymphoblastic leukemia, that knowledge can inform future solutions.
In terms of the Family Caregiving Institute, researchers currently develop caregiving competencies for health care providers to better foster the conversations and shared decisions between families and practitioners. Those will likely weigh into the recommendations of this research team when considering improved delivery of innovative treatments at home in ways that are empowering to for patients and families.
“Research in both UC Davis entities focus on issues that affect older adults and their families. These two conditions of our initial studies also affect that population,” Kim explained. “With our vision to improve the lives of these individuals and their families, coupled with Amgen’s quest to develop solutions that lead to an improved quality of life, we believe this is only the beginning of long-term, beneficial relationship.”
For more on the Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis or the School of Nursing’s research and degree programs, visit nursing.ucdavis.edu. To learn more about the Healthy Aging in a Digital World initiative, visit https://bigideas.ucdavis.edu/healthy-aging-digital-world.