[Openid-specs-heart] HEART 2015-08-05 meeting notes

Thu Aug 6 20:06:14 UTC 2015

I'm not sure what we're negotiating here. The current approach to
interoperability does not work for many, maybe most people. Part of the
reason it doesn't is that privacy approaches that work at a scale of 10K or
100K people don't work when the scale is 100 Million people. I've been a
party to four or five generations of attempts at interoperability (IHE,
NwHIN, CONNECT, DIRECT, BlueButton Plus) and we still don't have a clear
solution. We've also seen that even completely centralized systems like the
UK NHS can't deal with this problem very well so I can't see why CommonWell
or Carequlality or Epic everywhere would succeed.

The one thing we haven't tried is patient-driven interoperability. Apple
has shown us how patient-directed interoperability can work in a highly
integrated system. UMA is the only standard we have that has the potential
to introduce patient-driven interoperability to healthcare.

We have to give patients that understand UMA the option to use it. Patients
who don't care will see no difference at all because the Resource Server
will offer a default AS.

Once patients have the option to specify the AS the other interoperability
issues, including scopes, will incrementally get fixed. But the first step
is to agree that there's only one Alice and she has an AS. That is the only
scalable and non-coercive solution.

Adrian

On Thu, Aug 6, 2015 at 9:51 AM, Maxwell, Jeremy (OS/OCPO) <
Jeremy.Maxwell at hhs.gov> wrote:

> How many patients do we expect to have the technical savvy to say this to
> their provider?  In practice, where will these authorization servers reside?
>
>
>
> "Dear Dr. Jones: please treat my authorization server, at
> https://authz.alice.org, as representing my wishes for disclosure of my
> health data. Use the decisions that server renders to guide your access
> control decisions about my data."
>
>
>
>
>
>
>
> *From:* Openid-specs-heart [mailto:
> openid-specs-heart-bounces at lists.openid.net] *On Behalf Of *Josh Mandel
> *Sent:* Thursday, August 06, 2015 9:19 AM
> *To:* Moehrke, John (GE Healthcare)
> *Cc:* openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] HEART 2015-08-05 meeting notes
>
>
>
> As to the division between "gross ceremony" and "finer-grain adjustments",
> I want to suss out whether the following model (which readily applies to
> UMA, though not to vanilla OAuth) is consistent with you have in mind, or
> whether this model is addressing a different question entirely:
>
>
>
> 1. *Gross ceremony* consists of Alice introducing her resource server to
> an authorization server of her choice. For example, she might sign a
> document saying (effectively): "Dear Dr. Jones: please treat my
> authorization server, at https://authz.alice.org, as representing my
> wishes for disclosure of my health data. Use the decisions that server
> renders to guide your access control decisions about my data." This
> document is easily comprehensible, could serve as evidence in court, etc.
>
>
>
> 2. And then the *finer-grain adjustments* would be made by Alice in
> concert with her authorization server (for example, establishing specific
> policies about who can access her data, and which data, and for what
> purposes, and under what conditions).
>
>
>
> On Thu, Aug 6, 2015 at 9:06 AM, Moehrke, John (GE Healthcare) <
> John.Moehrke at med.ge.com> wrote:
>
> I agree with your proposal for ‘Authorize for Disclosure’ and to
> de-emphasize ‘Consent’… (although this problem with ‘Consent’ is only a USA
> problem)…
>
>
> But I don’t think that a UMA/OAuth ‘token’ will be seen as legitimate
> evidence in a court. It would be quickly shown to be not intelligible by
> the layperson, I can barely read them. Thus it is not evidence of the act
> of ‘authorizing for disclosure’ ceremony.  This is indeed a practice-of-law
> problem that we all hope changes, but I have little hope that it will
> change in the coming 10 years. This is why I want the gross ceremony to be
> a pre-condition, with the UMA/OAuth technology be the fine-grain solution.
> I expect that a gross ceremony can be shown in a court as evidence that all
> parties understood the use of the technology would be used for fine-grain.
> Note that if the courtroom antics change, then this pre-condition simply
> goes away. But by putting it there we enable it to be used, and thus make
> our solution more palatable to the legal folks at those custodian
> organizations that are afraid to release information today.
>
>
>
> John
>
>
>
> *From:* Aaron Seib [mailto:aaron.seib at nate-trust.org]
> *Sent:* Thursday, August 06, 2015 7:58 AM
> *To:* Moehrke, John (GE Healthcare); 'Adrian Gropper'; 'Debbie Bucci'
> *Cc:* openid-specs-heart at lists.openid.net
> *Subject:* RE: [Openid-specs-heart] HEART 2015-08-05 meeting notes
>
>
>
> I tend to agree with John’s recommendation with a friendly amendment.
>
>
>
> We should not mis-use the word consent.  We should use the term –
> authorize for disclosure.
>
>
>
> The primary reason being that the term consent has a lot of baggage and is
> defined in law for Human research protections and authorize for disclosure
> is more accurate to me.  Consent – as pointed out by the Kind Sir from
> Boston (Adrian) to point out – meant something before 2002 that it doesn’t
> mean anymore.
>
>
>
> In my opinion the notion of authorize for disclosure also conveniently
> aligns with my understanding of what ab “UMA/OAuth token” would represent
> on a per transaction basis.
>
>
>
> In court we would expect the entity accused of unauthorized disclosure to
> be able to produce a valid UMA/OAuth token as a sufficient defense from
> mis-representations of trial lawyers.
>
>
>
> Aaron Seib
>
> NATE
> <https://urldefense.proofpoint.com/v2/url?u=http-3A__www.nate-2Dtrust.org_&d=AwMFaQ&c=IV_clAzoPDE253xZdHuilRgztyh_RiV3wUrLrDQYWSI&r=B4hg7NQHul-cxfpT_e9Lh49ujUftqzJ6q17C2t3eI64&m=87vCtxeoEunALdecDlNur8aIU5qcY6YWTAxWw6j34cs&s=PU_01do09mzHBYjfdhFvZCLDAP7Tpxnm1P001w-6AlU&e=>,
> CEO
>
> @CaptBlueButton
>
> (o) 301-540-2311
>
> (m) 301-326-6843
>
>
>
>
>
> *From:* Openid-specs-heart [
> mailto:openid-specs-heart-bounces at lists.openid.net
> <openid-specs-heart-bounces at lists.openid.net>] *On Behalf Of *Moehrke,
> John (GE Healthcare)
> *Sent:* Thursday, August 6, 2015 7:27 AM
> *To:* Adrian Gropper; Debbie Bucci
> *Cc:* openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] HEART 2015-08-05 meeting notes
>
>
>
> At the federal level, under HIPAA alone, there is no need for consent for
> purposes of using the data within the Covered Entity for Treatment,
> Payment, and Normal operations.
>
>
>
> BUT, there are plenty of states that require consent… Ignoring reality of
> states regulations is not useful.
>
>
>
> AND, there are some institutions that would rather have a consent that
> authorizes them to share beyond their Covered Entity boundary. Not everyone
> reads HIPAA ‘Treatment’ as an authorization to share with any treating
> provider.
>
>
>
> AND, there are some ‘sensitive’ health topics covered by federal money
> that do come with a requirement for consent for sharing. This was the main
> focus of the DS4P efforts.
>
>
>
> So, let’s not focus on HIPAA alone. Let’s expect that ‘for whatever reason
> an organization wants to have positive evidence that the patient desires
> sharing to happen’ as the trigger to allow it to happen (otherwise deny it
> from happening. This would seem more helpful to the community we are doing
> this work for.
>
>
>
> An important aspect of all of this is how will the organization holding
> the data be able to legally defend that a UMA/OAuth token was valid
> evidence of consent that would hold up in a courtroom… We can’t address
> this in HEART, but it should not slow us down. We again, document this as a
> precondition to our work. One way this is done is that a paper trail is a
> part of the initial setup of a patient engaging with the system.
>
>
>
> John
>
>
>
> *From:* Openid-specs-heart [
> mailto:openid-specs-heart-bounces at lists.openid.net
> <openid-specs-heart-bounces at lists.openid.net>] *On Behalf Of *Adrian
> Gropper
> *Sent:* Wednesday, August 05, 2015 11:49 PM
> *To:* Debbie Bucci
> *Cc:* openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] HEART 2015-08-05 meeting notes
>
>
>
> I have never heard the term "simple consent". There's nothing like
> "consent" in the context of data sharing that I can think of. HIPAA removed
> the patient's right of consent in 2002
> https://patientprivacyrights.org/?s=HIPAA+Consent
> <https://urldefense.proofpoint.com/v2/url?u=https-3A__patientprivacyrights.org_-3Fs-3DHIPAA-2BConsent&d=AwMFaQ&c=IV_clAzoPDE253xZdHuilRgztyh_RiV3wUrLrDQYWSI&r=B4hg7NQHul-cxfpT_e9Lh49ujUftqzJ6q17C2t3eI64&m=QPfpP6tNPhNn0uCYFnfBuRqSH5IVEwKw_Jqp3j4NGRQ&s=u1OCcH7ZkX-4jzmNs_eIhVZUi0lQOy0npXd30zYGE8I&e=>
>
> There are consent forms for research but that's not part of the use cases
> we're tackling these days.
>
> Does anyone have an example of consent for clinical data sharing to share
> with us?
>
> Adrian
>
>
>
>
>
> On Thu, Aug 6, 2015 at 12:10 AM, Debbie Bucci <debbucci at gmail.com> wrote:
>
> @Eve - yes I know its client but I'm really hung up on the token
> generation/choices.   Thanks for the tweaks.
>
>
>
> I know we clarified that the release form is NOT consent in one of our
> earlier meetings  but is this (release of information) what I have heard
> others refer to as simple consent?    During this process would access to
> problems/meds/allergies be included in that authorization/consent flow?
> I visualized more than demographics in the conversation.
>
>
>
>
>
>
>
> On Wed, Aug 5, 2015 at 9:21 PM, Justin Richer <jricher at mit.edu> wrote:
>
> Thank you, Adrian, this is a great reference! I think your annotations
> make sense as well, things should map pretty plainly to the OAuth process.
> The tricky part (that we got a start on today) is going to be the scopes
> bits and getting those right.
>
> For an UMA flow, it's also similar, except that the "who can see it" is a
> set of claims instead of the client application.
>
>  -- Justin
>
>
>
> On 8/5/2015 9:12 PM, Adrian Gropper wrote:
>
> I've attached a very typical Release of Information authorization. I've
> annotated the 5 elements common to all such documents that I have ever
> seen. The stuff outside if the rectangles is more or less optional.
>
> This form covers one direction of the EHR-PHR Use Case. It is presented to
> the Custodian (the patient or their designate ) and approved by them by the
> Resource Server and pre-filled with information supplied by the Client, if
> available.
>
> In some cases, the Client information is not available at the time the
> Authorization form is signed. In that case, it will be up to the
> Authorization Server to consider the Client and User information and
> provide the authorization to the Resource Server.
>
> The Resource Server has the final say in all cases and could decide to
> ignore the authorization based on local or jurisdictional policy. This is
> outside the control of the Resource Owner and likely to be out of scope for
> HEART in all use-cases.
>
> This ROI Authorization Form is the only "consent" that I'm aware of in
> clinical IT. Patients are asked to sign other documents, including:
>
> Registration Form, Notice of Privacy Practices, and Treatment Consent but
> none of these has anything to do with sharing of health data (except for
> HIPAA TPO which we will not get into here.)
>
>
>
> Adrian
>
>
>
> On Wed, Aug 5, 2015 at 8:27 PM, jim kragh <kragh65 at gmail.com> wrote:
>
> Thanks for sharing,...  informative and constructive in reaching the
> patient end point.
>
>
>
> May all have a nice evening!
>
>
>
> On Wed, Aug 5, 2015 at 3:26 PM, Debbie Bucci <debbucci at gmail.com> wrote:
>
> Attendees:
>
> Eve Maler
>
> Justin Richer
>
> Josh Mandel
>
> Adrian Gropper
>
> Thomas Sullivan
>
> Debbie Bucci
>
>
>
> We have decided to delineate between mechanical and semantic scope docs.
>
>
>
> For the PCP <-> PHR use case:
>
>
>
> The pre determined choice token confidential token choice and exactly what
> information needs (example: PHR's authorization endpoint)  to be shared in
> advance between the PCP's EHR and Alice's PCP was left out of the
> discussion for now.
>
>
>
> There is one basic mechanical Oauth  generic flow that occurs twice in the
> use case.
>
>
>
> Given the group has generally agreed that the SMART specifications are a
> good place to *start **... *for this particular use case  the only
> semantic FHIR scope that is necessary is the patient/*.read scope that
> grants permission to read any resource for the current patient.
>
>
>
> During the registration process Alice should be able to select at a fine
> grain level which resources she is willing to share with the PHR.   This
> mimic's a specific process - Adrian please provide.  This information will
> be used to generate the access token.
>
>
>
> The one thing left at the end of the discussion is whether the patient
> record is implicit or explicitly stated.  This is a design decision that
> may make a difference as we move towards our next use case in
> which delegation is a factor.
>
>
>
> Corrections/updates appreciated.
>
>
>
>
>
>
>
>
>
>
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>
>
>
>
> --
>
>
>
> Adrian Gropper MD
>
> RESTORE Health Privacy!
> HELP us fight for the right to control personal health data.
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Adrian Gropper MD

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