Full Title or Meme
Healthcare system need to involve the patient directly in their own care-plan. This requires the patient to write data back into their Electronic Health Record (EHR).
On 2021-03-19 HOLD ONC - Policy and Technology Workshop on Write-Back APIs 5 hours with workshops. (invite only 67 participants, many from ONC)
- Micky Tripathi keynote
- Steven Posnack - set the tone for write-back. No slides, not content.
- Kevin Chaney - https://www.healthit.gov/topic/scientific-initiatives they work on apis, originally read-only, now moving into a multiyear effort for scientific discovery.
- Patricia Flatly Brennan (Patty) - director National Library of Medicine NIH - researchers' perspective. Where is the data "written-back" to? How does the patient know where the data is shared? Inclusion. Funds major research. Defined "patient-generated" and "patient-defined" distinction
- ONC is also supporting the creation of Health IT tools to make EHR data research / and AI ready: https://www.healthit.gov/topic/onc-funding-opportunities/leading-edge-acceleration-projects-leap-health-information
- Paula Braun - To what extent is NIH considering how data aggregators, such as public health, can provide derived intelligence as additional context that is relevant to the clinical context and patient-managed care? (How is the population determined to be representative?) Patty wants inclusion.
- Josh Mandel - technology perspective - what do people to to extract information - how do we scale - what are use cases:
- work flows for both research and clinical (he didn't mention public health - no one did)
- clinician defines the data they want and sends a form to fill out. (then the patient doesn't even get a copy when they are done?)
- strongly typed observation - blood pressure - blood oxygen
- risk assessments
- Does a write-back API make the app into an FTC medical device subject to regulations?
- How does patient provide consent for data sharing?