Stream: patient empowerment
Topic: Human Agency Standard
Dave deBronkart (Jun 20 2019 at 23:24):
This is way downstream from what we're up to but as soon as I publicized my final post from DevDays, discussion led here -
On Twitter Adrian Gropper proposes his Human Agency Standard as a way of dealing with questions of who decides who decides what should be decided on behalf of whom. Such questions drive me crazy but I wonder if anyone here has thoughts.
https://twitter.com/agropper/status/1141833956259745792?s=21
@ReasObBob @LeahHoustonMD @ePatientDave @HL7 @GrahameGrieve @wolands_cat We already have the reference architecture: http://bit.ly/HumanAgencyStandard It distributes the decision to the individuals and and allows communities to suggest policy to the individuals. This is what #HIEofOne demos @shihjay2 @PatientPrivacy
- Adrian Gropper (@agropper) Dave deBronkart (Jun 20 2019 at 23:24):
It’s only 2.5 pages long
Grahame Grieve (Jun 20 2019 at 23:29):
I think that FHIR is kind of neutral on some of this. I look at it from an international perspective and say that the patient is the focus. To what degree that patient can have agency is cultural, but I support it where it's possible. But I think that Adrian is taking a very narrow view of the information ownership question, one that ignores lots of case law (so far as I can see)
Dave deBronkart (Jun 20 2019 at 23:31):
Thx. Any others?
Abbie Watson (Jun 21 2019 at 03:38):
Thx. Any others?
This is a topic often covered in Medical Ethics courses. There's a half-dozen commonly identified ethical frameworks, including Autonomy/Agency, Social Justice, Non-Maleficence , Doing-Good, Utilitarianism, Deontology, along with a few other esoteric ones. Human Agency Standard obviously represents Autonomy/Agency ethics, and is an essentially critical worldview. It's constrained by real heavy hitting alternatives though, such as the Hippocratic Oath itself; any economist or administrator trained in John Stuart Mills and utilitarianism; centralized government authorities and executive orders (deontology), and social justice advocacy. Of the major ethical standards, Autonomy is arguably the most patient-centered. (Which is why we centered it within our mission statement and business documents.)
Dave deBronkart (Jun 21 2019 at 15:24):
Wow, thanks, @Abigail Watson ! At some point that level of knowledge will be useful in deeper discussions, which I hope can be hosted somewhere in the HL7 universe.
Virginia Lorenzi (Jul 23 2019 at 02:39):
So this identifies a hole out there. There is not a gallery you can go to to get a reliable list of what patient facing applications actually are working and with which EHRs. Smart-on-fhir gallery flavored thing. I know of a bunch of apps because I have tested with them. I only mentioned ones that I know work. And Apple can act as a middle man as noted on this thread, but its not the only one. 1upHealth can also do that - they probably serve a unified FHIR view to their app developers.
Josh Mandel (Jul 23 2019 at 12:56):
Agreed. This kind of curated view is in scope for the gallery as a kind of overlay focused on "known good" apps, and there's conversation with CARIN about using the CARIN code of conduct as part of that .
Last updated: Apr 12 2022 at 19:14 UTC
