Report from Virtual FHIR DevDays 2020 on the Patient Innovator Track
Initiatives seeking to expand the use of HL7’s Fast Healthcare Interoperability Resources (FHIR®) standard were highlighted at the recent HL7 FHIR Dev Days 2020 virtual event.
The Patient Innovator track included four presentations highlighting its recent move to encourage the use of technology to support patient involvement in care. HL7’s Patient Empowerment Work Group has a mission of promoting and amplifying the viewpoint of patients and caregivers in HL7’s standards work. Its initial priorities include enabling patients to correct errors in records, contribute their data to records, plan care, and efficiently gather and store patient consents.
The four presentations were judged by a panel of HL7 experts for their use or projected vision for the use of FHIR to solve problems in patient empowerment in healthcare. In addition, attendees at the virtual Dev Days event could vote to award one of the participants a People’s Choice award.Patient Innovation Winner: Morgan Gleason: 12 doctors and 23 portals
The four-judge panel selected the vision of Morgan Gleason, a patient activist who provided a potential role for FHIR in enabling patients to gain easier access to their records and facilitate their sharing with clinicians, particularly for those patients with complex, chronic conditions that typically require involvement from, and collaboration between, multiple care providers.
Gleason’s presentation was entitled “12 Doctors and 23 Portals,” detailing her experiences in dealing with care coordination for her life-threatening diagnosis of dermatomyositis, an autoimmune condition that causes skin changes and muscle weakness. Diagnosed as an 11-year-old, Gleason’s case was complex and eventually required her to take 21 pills a day, be hospitalized once a month for infusions and visit 12 doctors in four different states. The clinicians all used different records systems that did not allow records to be shared, and she faced the task of using 23 different portals to try and access records electronically.
She eventually developed a methodology that enabled her to collect her medical records, summarize them on a shareable cloud-based document that also included her own insights and questions, which she could then forward to clinicians for review in advance of scheduled appointments. It’s still a heavily manual process, she noted.
“My ask is this, to make this process a lot simpler,” she said. “I don’t want to spend my time requesting and summarizing records – this burden should not be put on the patient. Technology should be able to do this for me. FHIR should be able to help create my pre-visit summary in an automated way.” She also sees a role for the technology in improving record access, data sharing and workflow improvements for both clinicians and patients.
People's Choice Award: Olivier Karasira: Turning Paper Records into FHIR & SNOMED CT in Africa
The People’s Choice Award went to Olivier Karasira, whose project involved using FHIR and SNOMED-CT to enable the sharing of medical information in Rwanda and Burundi. The effort, which originated with the goal of improving the sharing of student records in Rwanda, has expanded to reduce the fragmentation of medical records and digitize information that often was recorded on paper. “There needs to be better quality and better health data in Africa so we can capture information and manage outcomes. We want to support children’s well-being based on timely access to data.”
Missed Virtual FHIR DevDays?
If you were unable to attend the virtual edition of FHIR DevDays, you can purchase the recorded version at the HL7 On Demand site.