ifmeorg
Export stories to EHR/PHR standard format(s)
Description
The ability to export stories in a format supported by electronic health records (EHRs) and personal health records (PHRs) would enable users to:
- Share relevant information with a medical professionals in a clinically useful manner.
- Import stories into a PHR, such as CHIP's Indivo (FOSS) or Microsoft's HealthVault.
- Integrate data from if me with any other app that supports the same standard(s) -- e.g., SMART platform apps, probably others.
- :heart: if me even more for offering data portability
Standards
The two standards I have in mind are both from Health Level Seven:
- Fast Healthcare Interoperability Resources (FHIR)
- Patient Generated Documents implemented with Clinical Document Architecture, Release 2 (CDA R2).
Licensing
FHIR is openly licensed: CC0, except for the trademarked stuff.
Everything CDA-related is subject to HL7's IP policy, the major points of which are:
- Their materials can be read and used (i.e., implemented) for free,
- Any type of reproduction/distribution requires the payment of "organizational membership" dues, and
- Third-party code sets may have different license terms.
Adoption
FHIR is relatively new, with the first non-draft trial-use version released earlier this year. It specifies both JSON and XML data serialization formats.
CDA R2 specifies an XML serialization format which has pretty wide implementation, mostly as Consolidated CDA (C-CDA), including the US government's Blue Button initiative and many EHR patient portals. I'm not currently aware of any applications implementing CDA R2 Patient Generated Documents specifically, but if I find some I'll add them here and/or in a comment.
Sample documents
Most of the FHIR samples I've seen are in the context of API demonstrations. HL7 Wiki has lists of FOSS FHIR implementations and public test servers.
CHIP has a repo with sample C-CDA documents, which includes XSL for transforming the documents to HTML. You can also browse and view CHIP's sample documents with my experimental, client-side CDA viewer, which exposes more data from the underlying vocabularies than any patient-facing XSLT I've encountered.
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If anyone would like to work on this, I think starting off with EHR is good since it looks like it's the most universal file type.
Let's keep this feature simple for now and just support exporting an individual Moments post to EHR format (triggers a file download)