Stream: patient empowerment
Topic: Pt Generated? Pt Contributed?
Dave deBronkart (Nov 19 2020 at 19:01):
Hey @Steve Posnack are your ears burning? In the Patient Empowerment WG call right now, @Jan Oldenburg is leading a discussion of terminology, and we wonder what you personally and ONC think about the difference.
Our concern: the ONC definition matches what we believe (anything that comes from the patient), but in PRACTICE, we find providers often really don't want to hear about it - they think of PGHD as only home digital devices: bathroom scale, Fitbit data, etc. It's the classic issue of "We don't trust anything from anyone but our own doctors, even when they're wrong." Except when the patient / family knows they're right, it's a PROBLEM clinically.
@Jan Oldenburg will improve what I just said I'm sure.
Ryan Howells (Dec 01 2020 at 01:35):
Hey @Dave deBronkart ONC defined it in this nice little infographic. https://www.healthit.gov/sites/default/files/onc_pghd_final_white_paper_infographic.pdf
Dave deBronkart (Dec 01 2020 at 04:21):
Ryan Howells said:
Hey Dave deBronkart ONC defined it in this nice little infographic. https://www.healthit.gov/sites/default/files/onc_pghd_final_white_paper_infographic.pdf
Hi @Ryan Howells ! Yes, and/but see my note to Steve here. Pesky old reality! :-)
John Moehrke (Dec 01 2020 at 13:30):
Dave, there is a time when an acronym takes ownership and the words that make it up mean less. I know of many places where PGD or PGHD are used. None of them are confused about "Generated" vs "Contributed". I would support change, as it is indeed early.. but I don't quite think this change is worthy of so much energy that it will take to fully change.
John Moehrke (Dec 01 2020 at 13:31):
think of it as "Generated in the domain of the Patient" vs the data that is generated by clinicians is not Patient Generated, it is "Generated in the domain of the Clinician"
Last updated: Apr 12 2022 at 19:14 UTC
