Stream: patient empowerment
Topic: Access, exchange, and use of EHI
Abbie Watson (Jul 13 2020 at 16:37):
So, I reached out to Steve Posnack a few weeks ago, asking about what the ONC's interpretation of patient generated data being sent back to the EHR was with regard to the Information Blocking Rule, and here is what he responded:
Screen-Shot-2020-07-13-at-11.13.27-AM.png
So now I have a whole bunch of follow up questions and points of discussion for the PE working group:
- How do we prove 'use' of patient generated data? Could a PHR audit trail help?
- How do we prove 'health use' of patient generated data? Could careplan tracking qualify? How about receipts for over-the-counter meds?
- Does patient-to-PHR provider qualify as 'exchange' of data? Could it?
- Can patient-to-patient sharing of data qualify as 'exchange' of health data?
- Where do Accountable Care Organizations (ACOs) fall into this?
- Can a PHR provider also be an ACO? What are the steps to doing so? What obligations are assumed?
- Can a patient advocacy group establish 'health use'?
- Can an argument be made around 'access to posting'? Or 'access to contribute'?
Steve was kind enough to point us in the general direction of the administrative considerations. We now need to unpack these clues and figure out how they relate to PRO, PGD, PCD, PHR-S and other implementation guides.
John Moehrke (Jul 13 2020 at 18:02):
I think these are the kinds of things that I would like to see our HL7 project on patient generated data to address.
John Moehrke (Jul 13 2020 at 18:04):
I think that following the lifecycle of a piece of data would be a good way to express the right way to do it. This would include abstract explanation of import, export, use, access, and at each step the best-case statement of provenance. Then show the same thing in a degenerate state that is functional (minimal provenance). And of course worst case (today) where no way to tell where data goes or comes from.
John Moehrke (Jul 13 2020 at 18:07):
The FHIR world is not yet fully expressing how data moves between two formal medical records, we tried to address this a bit in the Basic Provenance Implementation Guide. This same flow is needed between PHR and EHR, or EHR and PHR, or EHR to PHR to EHR... etc. All these export/import events need Provenance as it is very likely that the import activity will tend to "fixup" the data to the requirements of the target. This fixup action is unfortunate, but reality.
Dave deBronkart (Jul 13 2020 at 21:41):
our HL7 project on patient generated data
@John Moehrke I know you know this, but for those who don't:
To be clear, our defined interest is patient contributed data, for two reasons:
- To emphasize that the issue that we are pointing to (the HL7 Pt Empowerment group) is the importance and validity of information that comes from a patient; we assert to all of HL7 that health systems are NOT the only source of important & valid information
- Therefore, it's important to distinguish "patient contributed data" from so-called PGHD / Patient Generated Health Data, which has various existing meanings, which are not what we mean
Last updated: Apr 12 2022 at 19:14 UTC
