[Openid-specs-heart] Proposal for reworked use case AND use case template

Tue Aug 4 02:01:35 UTC 2015

I am serious – what is the performance requirements to operate an UMA server for one patient?  I wasn’t giving you a hard time.

If we assume that we want to make this work for 10 million people in the population tomorrow what do we have to pay to make it work?  I am assuming that there are hosting requirements for an UMA server and every consumer needs to be trained on how to use it. 

What is trivial?  Is it $10 per person per year?  $0.10 per person per year?  What is required to make it operational?  How much will they need to get paid to establish it?  

Are there comparable deployments that are operating at that scale that we can refer to from other consumer domains?  

I am making this point as I don’t want to inadvertently exclude options that should be considered for some transactions if they are sufficient if they have the same outcome at a lower cost per transaction for some transactions.

You ask who wouldn’t want to have every transaction verified against their own UMA server?  The person who is paying a per transaction fee to get it done for them.

Aaron Seib, CEO

@CaptBlueButton 

 (o) 301-540-2311

(m) 301-326-6843

From: agropper at gmail.com [mailto:agropper at gmail.com] On Behalf Of Adrian Gropper
Sent: Monday, August 03, 2015 9:07 PM
To: Aaron Seib
Cc: Id Coach; openid-specs-heart at lists.openid.net
Subject: Re: [Openid-specs-heart] Proposal for reworked use case AND use case template

On Mon, Aug 3, 2015 at 6:31 PM, Aaron Seib <aaron.seib at nate-trust.org> wrote:

I don’t get the assertion that  FHIR avoids the patient identity problem.  I don’t get this assertion.  Can you get the crayons out and explain that to me?

Why don't we have a banking identity problem? It's because people self-identify to their bank and their merchant. When somebody moves our money without that, we call it theft. 

Self-identification is core to OAuth. You don't even need UMA and the patient ID problem disappears.

What confuses the issue is discovery. In banking, we don't try to make our banking or shopping activity open to discovery. In the case of some purchases, we actually try to hide it. In general, to the extent our purchasing habits are subject to surveillance, we consider it creepy and opt for systems like cash or ApplePay where the merchants, at least, can't sell our purchase data to the data brokers. 

For some reason, healthcare starts from the assumption that people's private activity needs to be tracked whether they like it or not by dozens of "exchanges" and data brokers that we don't even know about. We are treating people the way we do cows in the feedlot. In banking we have three credit bureaus that track some of your activity but they're regulated and we have access to "free credit reports". Good luck trying to get the equivalent for your health care. For example, in many states, we have the equivalent of state credit bureaus in the form of All Payer Claims Database. Not one of them lets the patient access, check for errors, or benefit from this credit bureau behavior. Who wouldn't want a report from their All Payer Claims Database at the end of the yer when it's time to choose a Bronze, Silver, Gold or Platinum deductible form the health insurance exchange?

It sounds Miraculous and as far as assertions about software capabilities are concerned I am an agnostic.

What are the pre-conditions that allow for the patient identity problem is addressed.  What problem is created by eliminating that one?

Just so I am clear – the patient-centric approach essentially says that each individual has an UMA server set up that captures their privacy preference and subsequent changes through time.  Whenever data about the consumer is to be exchanged the service is checked to determine if the disclosure is permitted.

Yes. 

I would like to have an understanding of the performance considerations of such a system so we can start the procurement process now.

We already have this understanding. Bulk transfer of patient data dates back to the paper and mainframe days. It works just as well for hackers as it does for the primary business. It seems to take 4-8 months to discover a breach of millions of records. The system is certainly very efficient. It's time to introduce technology on the part of the user. The friction you're worried about is a good thing. It means the subject is aware of their data being moved from one custodian to another and breaches would be reported in minutes. The computing cost of this notice is now trivial. Think of the UMA server as simply a convenient way for your "providers" to notify you of data transfers out of your account. What patient or family caregiver would say no to that?

Adrian 

Aaron Seib, CEO

@CaptBlueButton 

 (o) 301-540-2311

(m) 301-326-6843

 <http://nate-trust.org> 

From: agropper at gmail.com [mailto:agropper at gmail.com] On Behalf Of Adrian Gropper
Sent: Monday, August 03, 2015 11:22 AM
To: Aaron Seib
Cc: Id Coach; openid-specs-heart at lists.openid.net

Subject: Re: [Openid-specs-heart] Proposal for reworked use case AND use case template

Aaron,

My definition of "patient-centric" is what we use in The Society for Participatory Medicine: "Nothing about me without me."

This is not as hypothetical as it sounds. A number of us in HEART worked on the "Privacy on FHIR" pilot for last HIMSS. We demoed a patient-centered system that included private EHR, gov EHR, 42CFR Part 2 sensitive data, PHR, phone apps, and wearable IoT devices all sharing data using FHIR.  http://wiki.siframework.org/file/view/HIMSS15_Privacy%20on%20FHIR%20FINAL.PDF/555755441/HIMSS15_Privacy%20on%20FHIR%20FINAL.PDF The use of a single UMA Authorization Server for Alice across all of these FHIR resources is the embodiment of "Nothing about me without me."

The patient-centered or patient-directed approach to FHIR solves, or at least avoids, the very difficult patient ID problem. It buys us time while cybersecurity initiatives like NSTIC/IDESG figure out how to implement practical trust frameworks for identity and related verified attributes. Human ID is not a healthcare-specific issue, because we don't license human patients. While others work on Human ID, we can use the patient-directed approach to match patients across institutions.

The patient-directed approach also avoids the difficult problem of delegation to a family caregiver or custodian. Instead of every FHIR resource having to implement a delegation method and policy, that responsibility shifts to the patient's AS and becomes mostly transparent to the resource server.

The patient-directed approach provides increased cybesecurity because the AS is consulted for every new interface access. This means that breaches can be discovered in minutes instead of months. This also fulfills the much-delayed Accounting for Disclosures requirement in HIPAA.

The patient-directed approach avoids most of the provenance issues because information flows directly from one institution to another without the opportunity for delay or corruption by intermediary PHRs or HIEs.

The patient-directed approach solves the "multiple portals" problem. Once registration is complete, the patient or custodian need not interact with the patient portal at the Resource Server again. In some cases, it's possible that the resource server can avoid running a patient portal altogether by allowing a staff member to complete enrollment of the patient's AS as part of registration.

The Russian Dolls metaphor doesn't work for me. What I see is a simple bifurcation at the root of FHIR design: either you enable a patient-specified Authorization Server as a third-party in server-client FHIR exchange or you don't. If you start down the UMA branch, then all of the benefits above accrue downstream. If you don't start down the UMA branch, then complexity explodes as we try to invent accessory actors, federations and governance mechanisms.

Adrian

On Mon, Aug 3, 2015 at 10:00 AM, Aaron Seib <aaron.seib at nate-trust.org> wrote:

Adrian,

Hi – I agree with your assessment regarding the sufficiency of oAuth for the use case as documented.  It is a good way and block and tackle the problem space to get to consensus of what separate components are capable of doing and resolving them from the basic to the complex.  

Does everyone agree with that starting point?  

For discussion purposes lets assume we have consensus on that.  For the use case where the consumer has PGHD that the Provider wants oAuth is sufficient.

This sentence from your email:

If the problem is to begin HEART with a patient-centricity as the problem, then this particular use-case distorts the discussion by presuming Alice wants a PHR and diminishes the patient-centered benefits of UMA as a health information exchange technology.

I want to parse that better so I understand – can you help edify me about what is meant by “patient-centricity as the problem”?

I don’t have the same feelings about the fact that part of the work HEART is doing is inventorying what the different use cases are and their sufficiency.  In fact I think this step may prove informative to the end point that we are all pursuing.

One use case that is important that doesn’t follow the “Consumer has PGHD that the Provider Wants” that readily comes to mind is the pattern of Provider A having PHI about Patient X that Provider B (whom has a patient-provider relationship with Patient X) should have if and only iff (IFF) it is aligned with the privacy preferences of Patient X for Provider B to have said data.  

To close the loop – is that a statement of a patient-centricity use case?  Does what we are learning with the first use case inform what needs to be done to satisfy the second use case?  

>From a laypersons perspective I see a Russian Dolls exposition of the use cases one building on another until we solve the problems established by this work groups charter.

Thank you for letting me share.

Aaron

Aaron Seib, CEO

@CaptBlueButton 

 (o) 301-540-2311

(m) 301-326-6843

 <http://nate-trust.org> 

From: Openid-specs-heart [mailto:openid-specs-heart-bounces at lists.openid.net] On Behalf Of Adrian Gropper
Sent: Sunday, August 02, 2015 2:30 PM
To: Id Coach
Cc: openid-specs-heart at lists.openid.net
Subject: Re: [Openid-specs-heart] Proposal for reworked use case AND use case template

Thank you Eve!! I hope we can reach consensus on something like the format you present.

Narratives are much easier to understand when they begin with a clear statement of the problem. Shouldn't use cases be asked to clearly state the problem they are trying to solve right up front? 

This particular use-case seems to be trying to solve some or all of three problems: federated sign-in, eliminating the registration clipboard hassle, and updating a PHR with encounter results. All of these can be solved by OAuth alone.

If the problem is to begin HEART with a patient-centricity as the problem, then this particular use-case distorts the discussion by presuming Alice wants a PHR and diminishes the patient-centered benefits of UMA as a health information exchange technology.

I've tried to clarify these fundamental issues in my comments on the document and hope we can resolve this before we move on to semantic profiling and scopes.

Adrian

On Sat, Aug 1, 2015 at 3:32 PM, Id Coach <coach at digitalidcoach.com> wrote:

Thanks Eve,

This is wonderful. I questioned/commented on things only a newbie is likely to ask/care about. 

It's also a useful template for other use cases. To your point about explaining oAuth and other template terms, you're using a new language and a new ecosystem to many, so I encourage those template terms to be explained over and over again as needed and as appropriate.

It will be helpful to me to illustrate or diagram this process. I'll take a crack at that in the next few days (I hope).

  judi

On 8/1/15 11:20 AM, Eve Maler wrote:

Completing my action item, you'll find our (well-worn :-) use case document here <https://docs.google.com/document/d/1IvbdWerdvMuA1dQ-KQvVKqIBrAas7FoenNVUtgpqYrw/edit?usp=sharing> . Following is my proposal. If we like what I've done here, I recommend that we: 

*	Edit the doc title to match the use case title I've supplied (just below the horizontal line).

*	Resolve all the comments above my title (fear not, they're all accounted for in the comments I've inserted) and delete all the text above that point (I've retained all our existing text above the line, just in case).

*	Resolve all the comments I've inserted -- as quickly as possible! We don't have to take up call time to do the minor ones, if people take the initiative to review them offline and supply their feedback as responses to this note. Note that, in this new template, I have avoided the use of the comment mechanism for anything that should be a permanent part of the document.

*	Ask people to write their other use cases in GDoc using this style.

*	Obviously, if you have suggestions on how to improve the template, weigh in! If you want to make invasive suggestions, contact me and we can do a collaborative editing session together.

I'm extremely glad I finally did this exercise, because it caused me to understand more of what we need to consider profiling and more of the "health SME" point of view. And, to be honest (perhaps forestalling a comment from Justin ;-), I don't feel that it was wasteful to go to this degree of mapping to the technologies because it flushed out some mismatches that really didn't make sense to me all this time. I now feel we can go straight to the heart (ahem) of the profiling matter with as many future use cases as we want, and in fact, we can begin profiling and write more use cases in parallel.

Thanks to you all for letting me "get my OCD on".

Eve Maler
ForgeRock Office of the CTO | VP Innovation & Emerging Technology
Cell +1 425.345.6756 <tel:%2B1%20425.345.6756>  | Skype: xmlgrrl | Twitter: @xmlgrrl
Join our ForgeRock.org OpenUMA <http://forgerock.org/openuma/>  community!

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-- 

Adrian Gropper MD

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

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

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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