Fwd: eConsent and equity ONC workshop - 1st session

I thought this group might have some interest in the effort to create
medical records consent in the US HHS.

Be the change you want to see in the world ..tom


---------- Forwarded message ---------
From: Tom Jones <thomasclinganjones@gmail.com>
Date: Wed, Aug 17, 2022 at 7:58 AM
Subject: Re: eConsent and equity ONC workshop - 1st session
To: Kantara FIRE WG <wg-fire@kantarainitiative.org>


Wrap up - as Sal pointed out the health techies wanted to talk about what
they were working on. But the packet that was passed out told a very
different storey about what ONC wants to address. They have very detailed
scenarios that were very complex, like baby Caden born with neonatal
abstinence syndrome and receives care from three separate specialists. One
of his specialists, Dr. Oliver, has requested a copy of Caden’s
immunization records from ABC Health System Hospital where he was born.

It seems they want to handle real world scenarios.  See attached for the
pre-work packet.

The last session included Jim St Clair (LFPH) and Ryan Howells  (CARIN
alliance). It seems like they are chomping on the bit and raring to go. I
expect that ONC will really be pushing this for the near future.

Be the change you want to see in the world ..tom


On Tue, Aug 16, 2022 at 10:31 AM Tom Jones <thomasclinganjones@gmail.com>
wrote:

> A major initiative by ONC is electronic Consent and health equity.  These
> are the people that have a stake in that effort. (Nancy was only one to
> make a clear statement of solutions)
>
> Thomas Mason Thomas A. Mason, M.D., Chief Medical Officer (healthit.gov)
> <https://www.healthit.gov/buzz-blog/author/thomas-mason> - health equity
> is his main remit.
> Carol Robinson - CedarBridge Group and Midato Health - easy to use is
> easy to say
> Nancy Lush - requires specific use cases (what i call purpose) She thinks
> UMA works for this? - DO NOT try to explain details to the user -
> patient-centric solution needed
> Edward Daniels - point of care - need to earn trust of patient -
> certification doesn't matter to user - especially true with low capability
> users - old and young both in this category - the big thing is to give the
> patient the information that they can understand when asked for a difficult
> decision - establish trust first  - does not want to go to hospital because
> they expect huge bills they cannot pay
> Tanisssha Harrell - San Diego 211 - vulnerable populations, like with a
> first responder -                  ally a challenge when trying to follow
> up with a person who is not used to contacts with the state that do not
> work against their freedom or comfort. - technology is trying to simplify
> the process, but patients are very complex - we need to slow down and avoid
> harm
>
> my own personal experience is when a relative is being serviced and not
> capable of giving consent - i could not even get information on where the
> relative was being serviced to the point where i called a hospital and
> could not even learn if they were at that hospital - consent can get in the
> way
>
> Discovery Workshop on eConsent: From Birth to End of Life | HealthIT.gov
> <https://www.healthit.gov/news/events/discovery-workshop-econsent-birth-end-life>
>