[Openid-specs-heart] Identity, Directory, Agency in UMA

Adrian Gropper agropper at healthurl.com
Tue Feb 16 20:07:44 UTC 2016


I replied to all of the comments so far.

1 - My principal outcome relates to managing directories of FHIR resources
for clinical purposes.

2 - A participant should be able to create distinct personas as a way to
avoid unwarranted surveillance. (Note that this applies equally to patients
and clinicians as participants.)

3 - A patient can offer her de-identified data to researchers using the
same AS that she uses for all her RSs. This provides researches the benefit
of access to non-clinical data such as location, environment, social, etc...

Adrian

On Tuesday, February 16, 2016, Josh Mandel <
Joshua.Mandel at childrens.harvard.edu> wrote:

> I've read this doc and littered it with questions and comments. In short:
> the proposal doesn't make technical sense to me, but I think I understand
> your desired outcomes. Perhaps best would be to start with an explicit list
> of these outcomes instead of attempting a complete protocol flow. I'm
> inferring these are:
>
> 1. A patient can participate in research by making her data,
> de-identified, available to researchers in a flexible way.
> 2. A patient should be able to create distinct "personas" such that two
> researchers would each see a different persona (same de-identified data,
> but no link telling Researcher A and Researcher B that they're dealing with
> the same patient).
>
> Is that right? Are there others?
>
>
> On Tue, Feb 16, 2016 at 2:02 PM, Adrian Gropper <agropper at healthurl.com
> <javascript:_e(%7B%7D,'cvml','agropper at healthurl.com');>> wrote:
>
>>
>> https://docs.google.com/document/d/1tmFcqFgA-mRsejLYf69DWN8nY_gCKdGjs3TMPejviwA/edit
>> <https://urldefense.proofpoint.com/v2/url?u=https-3A__docs.google.com_document_d_1tmFcqFgA-2DmRsejLYf69DWN8nY-5FgCKdGjs3TMPejviwA_edit-3Fusp-3Ddocslist-5Fapi&d=BQMFaQ&c=qS4goWBT7poplM69zy_3xhKwEW14JZMSdioCoppxeFU&r=c7b1QeR755-dBx2b0xnlepDTylromoEzcLl-6ixmBL3TpXSxSvtAvT553fzSgLpm&m=0FMJmhehRNrnCD-vrLGsH76o-LxCfR27wIjx564HTxU&s=ge46U1ybCs3_0SGaaD9vF2oTUOkCrYvs3eECEm3JTOE&e=>
>>
>> This is an attempt at a more general alternative to the HEART research
>> use case. I use participant to stand for either a patient or a clinician
>> with PII resources.
>>
>> Consider this a very early draft to start discussion and not a fully
>> thought-through solution.
>>
>> Can this work? Please comment on this thread if you make changes to the
>> document.
>>
>> Adrian
>>
>>
>> --
>>
>> Adrian Gropper MD
>>
>> PROTECT YOUR FUTURE - RESTORE Health Privacy!
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>>
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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/
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