Shifting the chronic disease discussion

Person-centered solutions drive innovative research

School of Nursing researchers hope to spark a wellness conversation between people managing their diabetes and their providers to improve their health.

Chronic illnesses consume 3 of every 4 health care dollars. Half of all adults have one or more chronic health conditions. Seven of the top 10 causes of death in 2010 were chronic diseases. The numbers are staggering. Identifying technological solutions to combat the statistics and empower individuals to change their behaviors by using those tools lie at the heart of innovative research led by the Betty Irene Moore School of Nursing at UC Davis. 

“Managing chronic illnesses is complex. Providers get graded every three months, yet people suffering from diabetes, heart disease or obesity live with these conditions 24 hours a day, seven days a week,” explained Heather M. Young, associate vice chancellor for nursing and founding dean of the School of Nursing. “The unilateral conversation that often happens in traditional healthcare where a provider tells a person what they should and shouldn’t do for their health doesn’t work and must evolve into a partnership with common goals.”

Part of the solution

The conditions that plague more than 117 million people can be managed, modified and improved if people living with them take part in the solution. As principal investigator of Patient and Provider Engagement and Empowerment Through Technology Program to Improve Health in Diabetes Project, Young and a team of researchers at the School of Nursing lead a $2.1 million study, funded by the Patient-Centered Outcomes Research Institute (PCORI), focusing on individuals with diabetes to determine if innovative approaches, including mobile technology and nurse coaching, help those people better manage their chronic disease.

“If we want people to feel confident that they can make positive health-and-wellness decisions in their daily lives, we must tap into what motivates each individual to manage his or her diabetes.  That may be quite different for each person,” added Sheridan Miyamoto, a 2014 Doctor of Philosophy graduate of the School of Nursing and co-investigator of the PCORI project. “We must enable both the person and their health care provider, to direct the conversation. When people identify incremental goals, develop a plan and trouble shoot potential barriers in partnership with a member of the healthcare team, they will achieve success and build confidence needed for long-term change.”

Stakeholder involvement

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. Rather than focus on the pharmaceutical regimen of diabetics alone, the focus is on lifestyle behaviors, such as diet, medication and exercise. Margaret Hitchcock, who lives with diabetes, welcomed the opportunity to serve as chairperson of the Patient Advisory Board, after a bad experience many years ago when she was initially diagnosed with the disease.

“After six months on diabetes-inducing medication, it was my ophthalmologist, not my primary care provider, who flagged my symptoms. Following my diagnosis, I received no education on how to best manage my symptoms and ultimately needed to learn how to balance many medications to keep my disease under control,” explained Hitchcock, a UC Davis retiree and current executive board member of the California Colorectal Cancer Coalition. “I finally got it under control after I took a proactive approach to managing my disease, including the timing and type of my medications balanced with an active exercise program.”

Adapting technology

Currently there are more than 35,000 health-related applications that people access on their smartphones. But those tools, which millions of Americans use to chart their health and wellness, were created for consumers, not health professionals or health systems. They cannot ensure privacy and many do not communicate with established electronic health record software. Furthermore, the information collected is not presented in a way that physicians can use in improving health outcomes.

Research to identify how technologies should be built for maximum behavior-change effectiveness is in its infancy. Researchers on the PCORI grant, as well as those leading other studies underway at the School of Nursing, are still a few years and many studies away from the solution, but the promise is encouraging. Researchers have found that determining what health information is valuable to physicians, what data people can collect on their own and how those records speak to each other in the world of technology is a challenge. Technology experts on the project tackle that head on.

“Many patients want to send all kinds of information, but providers are already overwhelmed and don’t have the capacity to extract meaningful information from an unorganized data stream,” said Scott MacDonald, a physician, informaticist and member of the Technology Advisory Board. “I hope ultimately that 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.”

Currently, informaticists and applied information technology experts learn from patients what information they want to share with providers. By working with both Apple’s HealthKit and software developed by Epic Systems Corporation, the largest deliverer of electronic health records in the country, investigators hope to create a process that collects and integrates data into a person’s chart, which in turn sparks a wellness conversation during a routine provider visit. The deployment of this technology is being done carefully to ensure data shared with busy clinicians is relevant to care and what physicians have agreed to review.

“The new capability is exciting to ensure UC Davis can support people who want to use modern mobile technologies to help manage their health,” said Michael Minear, chief information officer for UC Davis Health. “The PCORI grant serves as a catalyst for the health system to move forward quickly to deploy and test this technology, measure its success and make adjustments, and then be ready to quickly deploy this at a large scale with our care teams that deliver care to a large population of those who receive care from UC Davis clinicians.”

Next steps in year two

Once the technology interface is in place, researchers will recruit 300 people for the study. Half will receive traditional support in the form of electronic health record access and educational resources. The other half will receive health coaching intervention with a technology component.

“In the current system of reactive healthcare, there is rarely an opportunity for a wellness conversation,” Miyamoto added. “We hope to demonstrate that with the delivery of information that shows what people are doing in their daily lives, providers will have an opportunity to open a discussion around what the person is actively working on to better manage diabetes successfully. Provider messaging is very powerful and matters to people. If the conversation centers on what both parties care about, the potential for change is great.”

“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 added. “Nurses are well suited to work with chronic-disease issues in that we work with people to understand, cope with and manage their conditions.”