The purpose of the Patient Empowerment WorkGroup will be to directly represent the viewpoint of patients and their care-givers as part of the standards process.


References on rationale can be found here: References

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8 Comments

  1. Wayne Kubick

    Nice piece by Susannah Fox today worth a read:  https://thehealthcareblog.com/blog/2019/09/19/why-should-anyone-care-about-health-data-interoperability/ 

    1. Virginia Lorenzi

      I will add it to our resources page

      1. Dave deBronkart

        I don't see it there yet - can I add things, or do we need to appeal to (and then nag) you? (smile)

        I also want to add my Amsterdam 2018 speech, which is embedded in this blog post - it's proven to be a useful tool for explaining what we have in mind.  It compares Kristina Sheridan's manual data-pounding workflow with Mike Morris's "health data spigots" powered by FHIR.

        A tale of two patients: the difference #FHIR hopes to make with free-flowing data

  2. Rachel Richesson

    Here is a document from the American Medical Informatics Association (AMIA) that I recently re-discovered. They list concepts that the ogranization believes (values) and supports (policies); the first set in the pdf below lists AMIA principle statements related to Patient Empowerment.  I think it is a great resource for us to leverage!  https://www.amia.org/sites/default/files/AMIA-2018-2019-Health-Informatics-Policy-Priorities-final.pdf  (see pages 3&4) 


  3. Dave deBronkart

    Not sure if this is the right place for this question but - having not seen (or lost) the invite to last week's meeting, I wonder - do we record them for playback later?


  4. Rachel Richesson

    Based on discussions in list-serve and last couple of meetings, I took the liberty of starting a document to describe our position and value. I put it in the form of an FAQ document. Not sure the final form or audience for the document, but for now I figure it can help us clarify our thoughts and talking points.

    Please have a look and add any comments in any form. It is still rough but I will keep iterating until we get it right. Please do add comments or corrections - including suggestions for format and utility of this.  I am looking forward to our next call (in 2 weeks.)  Happy Thanksgiving to all that celebrate it!


    Thanks,
    Rachel

  5. Rachel Richesson

    I posted it under documents and the link is here: https://confluence.hl7.org/download/attachments/63242358/FAQ_HL7%20Patient%20Empowerment%20Group_21-Nov-2019.docx?api=v2


    I hope it works....

  6. Virginia Lorenzi

    beautiful.