[Openid-specs-heart] HEART stepping stones

[Adrian Gropper]

Then this is an excellent discussion. It suggests that there's a roadmap
and some metric for achievability.

For example:

With regard to UMA Authorization Servers, are you suggesting that we
consider a mix of personally-controlled and institutionally-controlled
Authorization Servers or just one or the other?

With regard to interface scopes, are there particular scopes that should be
considered before others?

With regard to identity management and identity federation, would we
consider patient ID before or after provider ID?

With regard to patient matching and discovery, would we try to keep these
in or out of scope for the early parts of the roadmap?

Is there a class of providers or data holders (hospitals, payers, labs,
public facilities, etc...) that we could prioritize?

Adrian



On Sun, Apr 19, 2015 at 9:33 PM, Moehrke, John (GE Healthcare) <
John.Moehrke at med.ge.com> wrote:

> I am not trying to limit the destination. I am trying to define the next
> achievable step.
>
>
>
> John
>
>
>
> *From:* agropper at gmail.com [mailto:agropper at gmail.com] *On Behalf Of *Adrian
> Gropper
> *Sent:* Sunday, April 19, 2015 5:13 PM
>
> *To:* Moehrke, John (GE Healthcare)
> *Cc:* Eve Maler; openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] HEART stepping stones
>
>
>
> Hello John,
>
>
>
> There's no need for you to take my perspective personally.
>
>
>
> "Data created fully by the patient" seems to be urging us to down-scope
> HEART to the non-HIPAA domain.
>
>
>
> Adrian
>
>
>
> On Sun, Apr 19, 2015 at 5:21 PM, Moehrke, John (GE Healthcare) <
> John.Moehrke at med.ge.com> wrote:
>
> Hi Adrian,
>
>
>
> Interesting misrepresentation of what I said. I am disappointed that you
> feel it necessary to misrepresent what I said. I am also disappointed that
> you feel it necessary to bring in other negative topics that I said nothing
> about. I am trying to find ground that we can progress forward on; while
> you seem to be just wanting to make personal assaults.
>
>
>
> Looking for the constructive message in your comment, I think you are
> suggesting that we scope our efforts to the flow of information from the
> patient possession to points-elsewhere. I am fine with that kind of a
> scope. It also avoids the issues I was bringing up.  I very much agree that
> data created fully by the patient is, and should be, totally controlled by
> the patient.  This scope also avoids the concerns that encumber healthcare
> provider environments:  Medical Ethics concerns, Safety concerns, and
> concerns of wrongful disclosure.
>
>
>
> John
>
>
>
>
>
>
>
> *From:* agropper at gmail.com [mailto:agropper at gmail.com] *On Behalf Of *Adrian
> Gropper
> *Sent:* Sunday, April 19, 2015 12:42 PM
> *To:* Moehrke, John (GE Healthcare)
> *Cc:* Eve Maler; openid-specs-heart at lists.openid.net
> *Subject:* Re: [Openid-specs-heart] HEART stepping stones
>
>
>
> John, I find your perspective both paternalistic and unscalable.
>
>
>
> US healthcare is awash in lack of transparency and the result is
> $1Trillion of unwarranted care. It's paternalistic and incredibly
> self-serving to presume that just because the institution has been given a
> right to use patient data without any accountability as long as the data is
> for Treatment, Payment, or Operations or De-Identified, or "Break the
> Glass", or prescription drug monitoring, or just plain lack of segmentation
> for access, that it's good policy. The current regulations are the result
> of heavy and effective lobbying by a very well organized industry trying to
> protect its secrets by avoiding the HIPAA accounting for disclosures and
> and patient right of access because they're "too hard". Think of HEART as
> trying to fix the "too hard" problem.
>
>
>
> Your perspective is also unscalable as more and more health-related data
> originates in wearables as well home and environmental monitors, and then
> ends-up in trans-national analytics completely outside of the HIPAA regs.
> It's also unscalable as patient data such as genomes can no longer be
> collected under informed consent because nobody has any idea of how your
> genomic information will be interpreted three years from now and how that
> interpretation might affect you or your children. It's also unscalable as
> the ability to promise de-identification for research becomes less and less
> realistic.
>
>
>
> The simple fact is that surveillance, data processing, and data storage is
> now effectively free compared to the economic value of the patient data.
> Rent-seeking-behavior by politically astute institutions has been effective
> for the past few years but the natives are getting restless. If you want to
> read more:
> http://thehealthcareblog.com/blog/2015/04/16/last-chance-for-meaningful-use/ and
> I hope you make the comments above on the blog.
>
>
>
> Adrian
>
>
>
>
>
> --
>
> Adrian Gropper MD
> Ensure Health Information Privacy. Support Patient Privacy Rights.
> http://patientprivacyrights.org/donate-2/
>
>
>



-- 
Adrian Gropper MD
Ensure Health Information Privacy. Support Patient Privacy Rights.
*http://patientprivacyrights.org/donate-2/*
<http://patientprivacyrights.org/donate-2/>
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