I’m short on time so I haven’t scoured this paper in the Journal of Participatory Medicine, but even from a skim I’ll say it’s important news from the front lines.
Implementing an Interoperable Personal Health Record in Pediatrics: Lessons Learned at an Academic Children’s Hospital is an early report from Lucile Packard Children’s Hospital at Stanford. The article makes clear their commitment to serving their patients, not holding them as captive customers – for them it truly is about what will best serve the patient:
The Lucile Packard Children’s Hospital at Stanford (LPCH) made a critical decision to implement a bidirectional, interoperable PHR for our patients and families. As a major referral center for complex and severely ill children, the hospital and clinics are often just one of many places in which our patients receive health care.
For example, over 90% of patients who receive care at LPCH have a primary care provider (PCP) outside of LPCH, and many have had hospitalizations or procedures performed in other tertiary care settings. In addition, LPCH receives patient referrals from over 30 states, so providing clinical data access regardless of location or source is critical to meet patient needs.
In this context, LPCH leadership decided that an interoperable PHR might be more immediately useful for patients given that data portability and the ability to share vital information with other providers were major concerns for families. In addition, since LPCH treats children and adolescents, as these youths grow older and begin to leave home for college or work, they often transition to different caregivers. The interoperable PHR allows the patient to retain access to their health information even after they have stopped receiving treatment at LPCH, thereby easing their transition.
Challenges: This case may become a landmark as the industry starts rolling out patient-centered IT. The section on challenges notes, “We found that our most notable challenges were not technological, but rather operational and cultural.” Here’s a glimpse:
The second major challenge… involved negotiating the cultural and organizational differences between an academic children’s hospital and the software company providing the PHR. Unlike previous large hospital IT projects … the initial software vendor providing the PHR does not specialize in developing and implementing medical technologies in the enterprise setting, but rather focuses on creating consumer-oriented tools. The hospital’s expectations of solid timelines for new releases and API tools bumped up against the consumer software company’s more fluid and organic product development culture….
The section on early feedback will be valuable for anyone planning such a project. The whole article, again, is here.
Kudos to Lucille Packard at Stanford for being further along the curve than the rest of Stanford. (fascinating that they could be so innovative) considering that the rest of the main hospital and for sure the ortho groups use a flavor of EPIC, and are seriously bogged down in their bureaucracy. It took me forever of stamping my feet to correct a misstatement in EPIC that I was on methadone.
I hate Stanford medical institution mostly for their onerous, over the top, non participatory, process. #FAIL