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

Wed Aug 3 11:48:09 UTC 2016

Regardless of how it makes me feel – my question earlier is how do we actually address it.

I think the NPP is one way for providers to convey that they will or won’t acknowledge what your Privacy Preferences are – indicated via a AS.

Does anyone disagree with that?  

There are providers that will argue that they have an ethical responsibility to share with other doctors that may treat you.

My question comes down to – is a provider obligated to share for Treatment purposes or is it just that they are permitted to despite a patient like Adrian’s preferences.

Anyone have an authoritative answer?

Aaron Seib, CEO

@CaptBlueButton 

 (o) 301-540-2311

(m) 301-326-6843

cid:image001.jpg at 01D10761.5BE2FE00

From: Openid-specs-heart [mailto:openid-specs-heart-bounces at lists.openid.net] On Behalf Of Adrian Gropper
Sent: Tuesday, August 2, 2016 5:27 PM
To: Maxwell, Jeremy (OS/OCPO)
Cc: openid-specs-heart at lists.openid.net
Subject: Re: [Openid-specs-heart] Alice's health resource set

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 (?)

-- 

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/> 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/> http://patientprivacyrights.org/donate-2/ 

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