Shifting the chronic disease discussion, developing nurse-led interventions
After her diabetes diagnosis 15 years ago, Diane Goodman attended a four-hour education class. She says the topics of diet and exercise were discussed briefly, but teachers spent the majority of time on how to prick her finger to test her blood sugar.
She left the experience understanding little about the importance of keeping her blood sugar in check and the serious consequences if she did not keep it under control. Then four years ago, she suffered a heart attack.
“I was in denial. I didn’t want to think of myself as being sick,” Goodman says. “But that heart attack convinced me to be more diligent about working every day and make a lifestyle change to stay healthy despite my disease.”
Half of all adults have one or more chronic diseases. Identifying technological solutions to empower individuals, like Diane, to change their behaviors by using those tools lies at the heart of innovative research led by the Betty Irene Moore School of Nursing at UC Davis.
The Patient and Provider Engagement and Empowerment Through Technology Program to Improve Health in Diabetes Project is a $2.1 million study, funded by the Patient-Centered Outcomes Research Institute (PCORI). Led by School of Nursing Founding Dean Heather M. Young, the team sought to have nurse coaches work with patients to develop health goals coupled with wearable devices to collect patient-generated data, then integrating the patient-generated data into the electronic health record (EHR), thus enabling nurses and providers to change the conversation about health and support health improvement.
“The innovation puts the person living with diabetes at the center of care and identifies what’s most important to them. Then we customize the health system to work for them,” Young adds. “It’s collaboration at a profound level that honors knowledge, values and priorities, and brings to bear clinical expertise to help actualize what individuals want to accomplish for positive health and wellness decisions in their daily lives.”
For this three-year study, researchers assembled three advisory boards, including patients, providers and technical advisers from health systems across the region, in order to gain multiple perspectives. Goodman served as a voice for others living with diabetes.
“I saw my role as advising researchers on how diabetic patients feel about certain challenges and what technology was user friendly or not,” Goodman says. “I think the success of the project was due to the diversity of patient advisors. We were a group of men, women, young, older, different cultures and races. It broadened the perspective.”
Currently more than 165,000 health-related applications are available for people to access on their smartphones. One in five Americans owns a health care wearable. But getting the data collected by individuals to integrate with EHRs remains a sticking point. Young and her team recruited more than 300 people living with diabetes; half received traditional diabetes resources from the health system and half received mobile technology to track their activity, nutrition, heart rate and sleep, along with an assigned nurse health coach.
“Nurses met with participants biweekly by phone over three months to derive meaning from the technology generated data and encourage meaningful health changes,” says Sarina Fazio, a registered nurse who served as a coach for the project. “Nurses are well suited to work with chronic-disease issues in that we work with people to understand, cope with and manage their conditions.”
Participants each received an iHealth wireless device and were taught how to connect their data to the EHR patient portal via Apple Health. The resulting patient-generated data highlighted information generated by the patient, such as how many steps they had completed that day, alongside clinical data routinely gathered during a clinic visit. Seeing both allowed the nurses and providers to help participants understand how changes in behavior can have an impact on the course of their disease.
“We know that data are not enough,” says Sheridan Miyamoto, a co-investigator on the project team. “You can’t just hand out technology and expect changes, so participants were partnered with a nurse who could help them create meaning from the data to set personalized health goals.”
Because of this project, UC Davis Health now has the capability to allow patients to share vital stats and health behavior data with their providers through the EHR, should clinicians choose to adopt it. Next steps are to train providers on the software and get it translated into practice.
“Our ultimate hope is when a member of our health care team interacts with a patient that we have good data, presented in real time, in a usable and meaningful way that also captures early warning signs of health deterioration,” says Scott MacDonald, a physician, informaticist and member of the Technology Advisory Board.
Young credits early advice from the technology advisers, along with critical insight from patient advisers, to overcome unforeseen problems that crept up during the project. The research team now focuses on evaluating the intervention. Through participant focus groups, they hope to determine what worked, didn’t work or needs improvement in the intervention. They will then compare those participants who received the intervention with those who did not, to see it if improved their health.
“This research continues to build upon our collaborations across UC Davis and the region, and enables us to further our mission of transforming health care with system-level interventions that improve care,” Young adds.