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Chair:  @Jan Oldenburg Maria D. Moen

Scribe: @Jan Oldenburg 





Jan Oldenburg


Maria Moen

Victoria Lukondi

We discussed where administrative and financial data fit in the universe of “patient-generated health data. While patients need convenience and don’t want to re-enter this information, we tend to view patient contributed data as being more clinical/health-oriented than administrative and financial information. The patient empowerment group could and perhaps should do something about patient convenience and frictionless healthcare—but it probably doesn’t fit in this workgroup’s scope.

We can include administrative and financial data as a “we looked at this” section while we explain why we didn’t include it in the framework. Hopefully, our paper will illuminate what exists now and what fits and what doesn’t.

We also discussed scheduling. There’s an Argonaut group that developed a read-only FHIR API for scheduling. Nothing can be sent back using it. They pushed to develop a spec so that all different EHRs can take in data regarding scheduling. Scheduling APIs should allow apps that are patient-controlled to actually be accepted into the EHR. Again, it is not clear that this is the province of “patient contributed data” but it needs to be considered. (One of the ways that broadening beyond PGHD may have widened the scope too far.

We also discussed whether the EHR is the right repository for all of this Patient-contributed data. Clinicians—and patients—need to be able to get to all of the data for analysis. Why can’t the patient see the same things that the doctor sees? Open notes—clinicians don’t really want you reading your chart. This issue, too, is important work for the Patient Empowerment committee but not for this sub-team.

Lisa Nelson added some resources that Maria will add to the spreadsheet.

We may need to limit scope to be able to complete this in the appropriate timelines.

Supporting Documents

Outline Reference

Supporting Document