The final report from the California Initiative to Advance Precision Medicine Projects (CIAPM) was released to the California State Legislature in July 2019. An initiative of then-Governor Jerry Brown in 2015, CIAPM engaged health experts from CITRIS and across the state to identify and resolve hurdles to precision medicine. Detailed in the report was the activity of the CITRIS-based Personal Mobile and Contextual Precision Health Project, also known as Percept. The project was led by a team including lead researcher, Nick Anderson (UC Davis); co-PIs Ida Sim (UCSF) and David Lindeman (CITRIS at UC Berkeley); and others. The team sought to create and test HIPAA-compliant mobile health applications that can track blood pressure, mood, movement, and medication data collected from patients.
According to the report, the field of precision medicine has two overarching goals: “gaining a better understanding of disease mechanisms, and fostering a more modern and equitable approach to health care using technology and data.” It is therefore best positioned to “transform how Californians will receive tailored healthcare and maintain well-being.” CIAPM involved both public and private institutions, addressing diseases including pediatric cancer, infectious diseases, brain damage, heart disease, rare childhood genetic disorders, high blood pressure, depression, prostate cancer, and multiple sclerosis.
Through this project, the Percept team was able to accomplish the following:
- Establish policy, privacy, and legal frameworks for linking data providers with clinical and personal data
- Develop a digital platform to record and report patient blood pressure, mood, physical steps, and medication adherence
- Evaluate application adherence both quantitatively and qualitatively
Working with Overlap Health, an open-source health tech company, the team developed a mobile app that supports back-end software, acting as a hub for data collection from electronic health records (EHRs), third-party health and wellness apps, blood pressure cuffs, and user input to track changes in patient blood pressure, mood, medication usage, and activity. The app was then tested over 6 months with 165 patients managing hypertension or chronic depression. Through these efforts, the researchers gained valuable data to better define current hurdles to precision medicine, including:
- Connecting diverse data sources from both in and out of the typical clinical data ecosystem
- Engaging patients in their own healthcare on a daily basis without overwhelming them with alerts and tasks
- Experiencing difficulties when apps and related hardware technologies ar prescribed as part of a care plan
- Ameliorating the current state of interoperability between consumer mobile phones and “connected” healthcare monitors, such as wireless-enabled blood pressure cuffs
“One of the most valuable outcomes of this project was being able to take a realistic peek into a future where apps and mobile healthcare devices are regularly prescribed as part of care management,” says Dan Gillette, Ed.M., senior research scientist at CITRIS and the Banatao Institute at UC Berkeley.
“By involving a large group of patients over an extended period, we were able to see what day-to-day life might really look like after the technical and motivational support of a research team fades away,” adds Gilette. “One of the takeaways is that almost nothing just works — manufacturers do not adhere to the most basic of standards and apps tend to have unnecessarily complicated setup procedures. It is clear that the smallest issues may be the most significant hurdles to our precision medicine future.”
Percept has received acclaim across the nation and state — especially from the governor’s office. Through their and other teams’ work under CIAPM, the door for groundbreaking precision medicine policies and research has opened.