[Openid-specs-heart] I asked the Society for Participatory Medicine list: What do you want from HEART?

Thu Jul 14 12:19:06 UTC 2016

Eve, I'm struggling to understand what you are saying in response to
Society issues.

1. Definition: *Agile *user. Is that someone who is tech savvy and
comfortable playing and troubleshooting on their own with the current
clunky systems? If that's the case, any design needs to consider the
non-agile user.
2. *With an UMA architecture in mind, we can fairly precisely name what
those services/apps/tools might be. *I don't know what this means.  How
does knowledge of UMA architecture allow you to precisely name
services/apps/tools? Where can I find that putative list?
3. I really like the UMA WG exercise format, but I struggle with feeling
like I need a dictionary with me for every line.  It feels like Pokemon to
me.  As my grandson says, 'Opa, you just don't get it.' I feel the same way
with much of the HEART work. I understand about 25%.  I stick with it
because I know it's critical and you all have way more expertise than I do.
My energy to do the work to understand waxes and wanes.
4. My barometer is that I need to be able to explain this to my blog
readers who include people at the center of care (individuals, care
partners, clinicians, direct care and support staff), policy wonks and
informatics professionals. I can't do that yet. My sense is that the WG may
be missing something if it isn't understandable to an educated (*agile?)* lay
person such as myself. The WG doesn't yet know what it doesn't know about
the life flow of the end users / beneficiaries of its work.

I'm willing to engage more, but I'll need some help translating.

On Wed, Jul 13, 2016 at 12:49 PM, Eve Maler <eve.maler at forgerock.com> wrote:

> The SPM list is interesting, and, I think, complementary to and an
> extension of privacy principles. It's not talking strictly about data and
> its exposure; it sets up a strong new data stewardship role for a patient,
> and then defines a relationship between that steward and various putative
> services/apps/tools out in the world.
>
> (With an UMA architecture in mind, we can fairly precisely name what those
> services/apps/tools might be.)
>
> These are stated nearly in the form of agile user stories: As the patient,
> I want to do X, so that I can (benefit in terms of) Y. Once upon a time,
> the UMA WG partially went through an exercise
> <http://kantarainitiative.org/confluence/display/uma/User+Stories> like
> that to assist in our protocol design effort.
>
>
>
> *Eve Maler*ForgeRock Office of the CTO | VP Innovation & Emerging
> Technology
> Cell +1 425.345.6756 | Skype: xmlgrrl | Twitter: @xmlgrrl
> *ForgeRock Summits and UnSummits* are coming to
> <http://summits.forgerock.com/> *Sydney, London, and Paris!*
>
> On Tue, Jul 12, 2016 at 2:51 PM, Adrian Gropper <agropper at healthurl.com>
> wrote:
>
>> The Principles of Privacy will only take you so far in the design of a
>> product, service, or HEART. At some point we need to apply Privacy
>> Engineering (
>> https://ethics.berkeley.edu/privacy/resources/privacy-risk-management-framework-nistir-8062
>> ) to achieve a particular set of goals. I submit that the SPM bullet points
>> are a reasonable goal for HEART.
>>
>> A less pedantic way to look at the bullets is simply to see them as the
>> essence of patient-centered design and focus HEART (and UMA) on solving the
>> multiple portals problem. From the patient's perspective, the only way to
>> solve the multiple portals problem is to be able to specify the
>> Authorization Server to every resource server. That means that regardless
>> of whether a resource server happens to be FHIR or whatever RESTful
>> standard my bank exposes for my health savings account or whatever standard
>> some wearable uses to stream my location coordinates, I can register and
>> manage all of these resources from my one chosen AS.
>>
>> If HEART doesn't take this perspective as we design our deliverable, who
>> does?
>>
>> Adrian
>>
>>
>>
>> On Tue, Jul 12, 2016 at 4:16 PM, John Moehrke <johnmoehrke at gmail.com>
>> wrote:
>>
>>> This is fine, but is simply another way of stating the well established
>>> Principles of Privacy... right?  I like how nicely compact your bullets
>>> are. I am just trying to determine if you think you have uncovered
>>> something missing....
>>>
>>> I have a blog where I catalog the various standards on the definition of
>>> Privacy -- principles. and cross-reference them
>>> https://healthcaresecprivacy.blogspot.com/2015/04/privacy-principles.html
>>>
>>> John
>>>
>>> John Moehrke
>>> Principal Engineering Architect: Standards - Interoperability, Privacy,
>>> and Security
>>> CyberPrivacy – Enabling authorized communications while respecting
>>> Privacy
>>> M +1 920-564-2067
>>> JohnMoehrke at gmail.com
>>> https://www.linkedin.com/in/johnmoehrke
>>> https://healthcaresecprivacy.blogspot.com
>>> "Quis custodiet ipsos custodes?" ("Who watches the watchers?")
>>>
>>> On Sun, Jul 10, 2016 at 11:18 AM, Danny van Leeuwen <
>>> danny at health-hats.com> wrote:
>>>
>>>> TX Adrian
>>>>
>>>>
>>>> On Sunday, July 10, 2016, Adrian Gropper <agropper at healthurl.com>
>>>> wrote:
>>>>
>>>>> Here's what the thread of patients and physicians came up with:
>>>>>
>>>>>    - As the patient, I am the primary steward of my health
>>>>>    information *wherever it is*.
>>>>>    - As the primary steward, I have full access to all of my health
>>>>>    information.
>>>>>    - As the primary steward, I can determine who has access to which
>>>>>    segments of my health information.
>>>>>    - As the primary steward, I am notified about changes and access
>>>>>    by others to my health information.
>>>>>    - Stewardship of my health information is done through a single
>>>>>    tool (web page or application) *across my service providers*.
>>>>>
>>>>> Adrian
>>>>>
>>>>>
>>>>>
>>>>>
>>>>> --
>>>>>
>>>>> 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/
>>>>>
>>>>
>>>>
>>>> --
>>>> Danny van Leeuwen
>>>> 617-304-4681
>>>>
>>>> *Blog www.health-hats.com <http://www.health-hats.com/> discovering the
>>>> magic levers of best health*
>>>> Twitter <https://twitter.com/HealthHats>
>>>> LinkedIn <https://www.linkedin.com/in/healthhatsdannyvl>
>>>>
>>>>
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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/
>>
>> _______________________________________________
>> Openid-specs-heart mailing list
>> Openid-specs-heart at lists.openid.net
>> http://lists.openid.net/mailman/listinfo/openid-specs-heart
>>
>>
>
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-- 
Danny van Leeuwen
617-304-4681

*Blog www.health-hats.com <http://www.health-hats.com/> discovering the
magic levers of best health*
Twitter <https://twitter.com/HealthHats>
LinkedIn <https://www.linkedin.com/in/healthhatsdannyvl>
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