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).
- Clearly there must be a patient relationship to create an EHR where data is collected. (That can be a simple as a person shows up in an ER and a temporary EHR is created.)
- Write-back might be a bad use of terminology there is the patient's desire to add data into the record. That is simple write data where nothing exists to write-back into.
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
- Brendan Keeler Why is the obsession with clinical data write back, rather than the patient provider communication, the scheduling and billing components that are most important to a patient? Patient data write back for clinical purposes is ultimately about helping providers and is a provider centric view. If we are purporting to be patient centric, those administrative tasks are the least standardized and would have the highest impact.
- Kristina Sheridan - As a patient and caregiver, I am looking for ways to improve how I can provide focused, longitudinal data collected between appointments that my provider needs to support clinical decision-making. Symptom severity data, medication compliance data, major events between appointments. Currently I have to use appointment time, from memory, to provide the information verbally. We can do better. We can capture those inputs as hard data for more effective use, to be available for analysis and be shared (with my permission) for research.
- Benjamin Orwoll - Oregon - provider perspective - Hospital - clinic - mobile health van - telemedicine
- Do providers write-back from apps (besides the EHR app)
- What do apps do? admin, place orders, manage guidelines, record vax, notes, send messages
- Must collect provenance, security, audit, trust
- Liability limitations
- Will write-back data trigger an event (for example late arrival lab results - received after patient is discharged)
- Handling of duplicate posts or contradictions
- HL7 Patient Empowerment is writing a white paper on Patient Contributed Data (PGHD) to help understand the definition, the current standards landscape, and identify where gaps and opportunities are from the standards perspective. https://confluence.hl7.org/display/PE/Patient+Empowerment+Home
- Does a write-back API make the app into an FTC medical device subject to regulations?
- How does patient provide consent for data sharing?