[Openid-specs-heart] Alice's health resource set

[Adrian Gropper]

If an organization wants to be nice to their patients and also reduce the
scope of data breaches they would notify patients when their data was
shared the way my bank and Apple do when they use my data in a third-party
context. We can hope that FHIR and HEART become so much standard practice
that every respectful organization adopts the Society for Participatory
Medicine motto: "Nothing about me without me."

The "consent for TPO" you seem to be describing however is just another
contract of adhesion that gives no meaningful choice to the patient at all.
I, for one, am insulted when presented by such a thing and I've never met
any patient that appreciates it.

Adrian



On Tue, Aug 2, 2016 at 5:12 PM, Maxwell, Jeremy (OS/OCPO) <
Jeremy.Maxwell at hhs.gov> wrote:

> Not sure I follow.  HIPAA does not require consent for TPO—it is a
> permitted use.  An organization may still choose to collect consent for
> TPO, either because of their own organizational policy or because another
> law requires it.  But this is not “HIPAA TPO consent.”  In ONC parlance, we
> call this “basic choice for TPO” in both our Interoperability Roadmap as
> well as our Patient Choice Technical Project.  Of course others may call
> this by a different term, but calling it a “HIPAA TPO consent” is imprecise
> and can perpetuate existing misunderstandings about what HIPAA actually
> requires.
>
>
>
>
>
>
>
> *From:* agropper at gmail.com [mailto:agropper at gmail.com] *On Behalf Of *Adrian
> Gropper
> *Sent:* Tuesday, August 02, 2016 5:01 PM
> *To:* Maxwell, Jeremy (OS/OCPO)
> *Cc:* Debbie Bucci; openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] Alice's health resource set
>
>
>
> Jeremy,
>
> Sorry, I should have said HIPAA TPO "consent".
>
> If access to the FHIR resources does not require Alice's authorization and
> the RS wants to keep Alice in the dark because HIPAA's accounting of
> disclosures is seldom implemented as well, then HEART is not involved. I
> would not call the TPO loophole consent except sarcastically.
>
> Adrian
>
>
>
> On Tue, Aug 2, 2016 at 2:22 PM, Maxwell, Jeremy (OS/OCPO) <
> Jeremy.Maxwell at hhs.gov> wrote:
>
> Also, want to clarify what “typical of HIPAA TPO consent” means?  TPO is a
> permitted use under HIPAA that does not require consent.
>
>
>
>
>
>
>
> *From:* Openid-specs-heart [mailto:
> openid-specs-heart-bounces at lists.openid.net] *On Behalf Of *Debbie Bucci
> *Sent:* Tuesday, August 02, 2016 2:17 PM
> *To:* Adrian Gropper
> *Cc:* openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] Alice's health resource set
>
>
>
> Lost me again Adrian -
>
>
>
> We should also not ignore the Client-to-AS first flow. This is the
> preferred flow from a privacy engineering perspective. (see other thread
> with Justin). In the majority of cases of HIE, the Client has a
> relationship with Alice already (this is typical of HIPAA TPO consent) or
> the Client has found Alice via a "Relationship Locator Service" which is a
> directory operated by the state or some private entity like CommonWell.
> When the Client matches with Alice in the RLS, does the RLS return a list
> of RSs or a pointer to Alice's AS?
>
>
>
> The most privacy-preserving thing would be for RLSs to return pointers to
> Alice's AS and in the future this is what Alice might insist on if she is
> still given a choice to opt-in or opt-out of HIE. Alice does have that
> choice today in the US. In other countries, not-so-much.
>
>
>
>  Are you suggesting the AS is some sort of proxy for all data - I don't
> think you were saying that.  At some point the Client would need a
> relationship with the RS as well - correct?   Is the Client to AS flow a
> separate spec?  Would you please provide the link?   Looking at UMA 1.01 -
> client needs a permission ticket first - that is generated from AS - to RS
> to client (?)
>
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>
> --
>
>
>
> Adrian Gropper MD
>
> PROTECT YOUR FUTURE - RESTORE Health Privacy!
> HELP us fight for the right to control personal health data.
> DONATE: http://patientprivacyrights.org/donate-2/
>



-- 

Adrian Gropper MD

PROTECT YOUR FUTURE - RESTORE Health Privacy!
HELP us fight for the right to control personal health data.
DONATE: http://patientprivacyrights.org/donate-2/
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