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Chair:  @Jan Oldenburg and Maria D. Moen

Scribe: @Jan Oldenburg 

Zoom meeting: Passcode is: engage




Jan OldenburgJan Oldenburg
Maria MoenMaria D. Moen
Adrienne Pichon
Virginia Lorenzi@Virginia Lorenzi


We began by discussing the infographic on PGHD that ONC created along with their white paper in 2017. You can find both here ( but both are also uploaded to the "materials" folder on our google drive.

Last week, Jan reviewed the resources and history of PGHD. She feels ready to begin writing the definition of what Patient Contributed Data is and how/where we differ from the historical antecedents of the term. She did ask for a discussion of how/why the group evolved from talking about PGHD to Patient Contributed data. Virginia suggested checking early Patient empowerment minutes from May. We also discussed the idea that Patient Contributed data is a broader term than PGHD and includes both data produced with technology and data that is on paper. We also discussed that patient contributed data is intended to have more agency than PGHD; the patient not merely the object of study. Patient contributed data is “anything the patient brings.” Patient Contributed data is a superset that includes PGHD. We will need pithy and clear examples to show the difference. If ONC’s definition really covers all of the territory, we should rethink our wording–and certainly, we want to honor the work done before us.

Device-based data that is transmitted directly already has standards for transmission, but may need a sort of moral dimension regarding patient awareness and permissions. An example is CPAP data, which is being shared with insurers and often used to not pay for devices or replacement gear (if deemed not to be used often enough). We may want to interject a discussion about the patient's ability to affirm or deny permission for such sharing as well as highlight appropriate and inappropriate uses of such data.  

RTI's definition from 2010 excludes clinical settings—we think those are still patient contributed data if the patient contributes without editing by the doctor, for example, family or health history.

In the definition of patient contributed data, we need to be clear about the value of patient contributed information – rather than the current approach, which tends to assume it is only credible when relayed through the lens of a clinician. Through our definition, we can lend an “aha” moment to the process by stating the value proposition and looking at what a person knows that no one else does. Patient as CEO of their own health.

We may need to look at the USCDI to assess whether it has sufficient data elements to support the wide range of patient contributed data. Right now it appears to be primarily Read oriented, but may need to incorporate writing to accommodate patient contributed data. We may need to deepen and broaden the list of data elements in USCDI to accommodate patient-generated health data. V1 expanded to include physician notes and provenance. Proposals to expand this year included 3 from patient empowerment: the UDI section on implanted devices adds the device manufacturer. Maria got something in to accommodate Advance Directives. Virginia also added structured flow sheet data, currently limited to Obstetric and Medication Administration. (All structured data in an EHR should be able to be retrieved.) Next year we may want to propose other stuff. 

Problem list, meds, issues are reasons why collaboratively creating a treatment or care plan is so important. In a number of states people in assisted living have to be able to self-administer all of their meds or else have their medications administered. People came in with shoeboxes where the medication list only had 5-10 meds. This addresses both OTC meds, herbals, supplements, and also meds from doctors not on the record.

For next week, everyone needs to take one or two of the documents listed as references and do a deep dive. Each person should create a summary of the document, how/whether it applies, and key thoughts and questions. We'll add a column to the document but will create a new document for this.

Virginia reminded us that there are key upcoming dates:

  • Nov 1 - Notice of Intent to Ballot - just a form/co-chairs must submit. 
  • Nov 15th - Initial Content complete/submitted.
  • Dec 1 Content complete (followed by formal 2 week QA). 
  • Ballot opens: Dec 11

Supporting Documents

Outline Reference

Supporting Document

Outline of white paper
Outline of references and sources