Proposed Consensus Statement on the Patient Perspective
0 views
Skip to first unread message
agro...@gmail.com
May 23, 2010, 6:39:12 PM5/23/10
to nhindirect-discuss
In the spirit of other consensus statements that will be used to
influence NHIN Direct technology selection and HITPC policy, I have
assembled a short list of issues from the perspective of patients as
first-class citizens of NHIN Direct. I don't mean to sound
confrontational but I decided being direct in this first draft would
make the issues clearer and I certainly assume that the actual
consensus statement will be calm as well as clear.
Where on the wiki would these belong?
1 - A patient can own their address on the NHIN and will have access
to any personal health information in a source service that bears the
NHIN label by authorized transfer to their destination NHIN address.
2 - Patients do not typically have direct access to master patient
index services. NHIN protocols that carry patient identifiers must
allow for the patient-owned identifier to replace or at least
accompany any provider or local patient identifier if these are
attached to a message as metadata. Patient identifiers that require
institutional OIDs must not replace or conflict with NHIN patient
destination addresses.
3 - To a patient, the NHIN label means they can get their health
records. To the extent that's true, the NHIN is cake, not a recipe and
technology and policy should align to keep the patient perspective
clear. If NHIN is too broad a categorization for guaranteed patient
accessibility, then we suggest that some other logo or label be
defined that tells patients their provider will send health records to
a similarly labeled PHR.
4 - Health information organizations, including registries set up to
facilitate provider-to-provider exchange, that store patient
information and provide no direct primary means for the patient to
receive an accounting of and a copy of their information should not
bear the NHIN label.
5 - Trust circles can be confusing to patients and should be clearly
labeled in consent documents if they are not accessible to patients'
PHR untethered to the trust circle.
6 - It's easier for a data source to perform format conversions than
for the destination to do it. Format conversions are particularly
difficult for patient-controlled accounts that wish to preserve
authenticity or the original source signature. For this reason, NHIN
directories that list destination addresses must allow the destination
to also specify their preferred data format ( e.g.: CCR ). Data
sources that store an original document can ignore the destination's
format preference and send the original document.
--
You received this message because you are subscribed to the Google Groups "nhindirect-discuss" group.
To post to this group, send email to nhindirec...@googlegroups.com.
To unsubscribe from this group, send email to nhindirect-disc...@googlegroups.com.
For more options, visit this group at http://groups.google.com/group/nhindirect-discuss?hl=en.
influence NHIN Direct technology selection and HITPC policy, I have
assembled a short list of issues from the perspective of patients as
first-class citizens of NHIN Direct. I don't mean to sound
confrontational but I decided being direct in this first draft would
make the issues clearer and I certainly assume that the actual
consensus statement will be calm as well as clear.
Where on the wiki would these belong?
1 - A patient can own their address on the NHIN and will have access
to any personal health information in a source service that bears the
NHIN label by authorized transfer to their destination NHIN address.
2 - Patients do not typically have direct access to master patient
index services. NHIN protocols that carry patient identifiers must
allow for the patient-owned identifier to replace or at least
accompany any provider or local patient identifier if these are
attached to a message as metadata. Patient identifiers that require
institutional OIDs must not replace or conflict with NHIN patient
destination addresses.
3 - To a patient, the NHIN label means they can get their health
records. To the extent that's true, the NHIN is cake, not a recipe and
technology and policy should align to keep the patient perspective
clear. If NHIN is too broad a categorization for guaranteed patient
accessibility, then we suggest that some other logo or label be
defined that tells patients their provider will send health records to
a similarly labeled PHR.
4 - Health information organizations, including registries set up to
facilitate provider-to-provider exchange, that store patient
information and provide no direct primary means for the patient to
receive an accounting of and a copy of their information should not
bear the NHIN label.
5 - Trust circles can be confusing to patients and should be clearly
labeled in consent documents if they are not accessible to patients'
PHR untethered to the trust circle.
6 - It's easier for a data source to perform format conversions than
for the destination to do it. Format conversions are particularly
difficult for patient-controlled accounts that wish to preserve
authenticity or the original source signature. For this reason, NHIN
directories that list destination addresses must allow the destination
to also specify their preferred data format ( e.g.: CCR ). Data
sources that store an original document can ignore the destination's
format preference and send the original document.
--
You received this message because you are subscribed to the Google Groups "nhindirect-discuss" group.
To post to this group, send email to nhindirec...@googlegroups.com.
To unsubscribe from this group, send email to nhindirect-disc...@googlegroups.com.
For more options, visit this group at http://groups.google.com/group/nhindirect-discuss?hl=en.
David Tao
May 24, 2010, 3:46:31 PM5/24/10
to nhindirect-discuss
Adrian,
Thanks for putting this stake in the ground. I think it deserves
discussion, and seems a good fit within the "Individual Involvement"
workgroup on the Wiki.
Ironically, though, this particular set of pages has had very little
discussion thus far, compared to others. I.e., our "individuals" are
not very "involved" at least not in discussion threads.
The main page has zero discussion, and there's a page for "patient-
provider issues and implementation"
http://nhindirect.org/message/view/Patient+to+Provider+Issues+and+Implementation/24472275
which has only two discussion threads (I posted one last week, which
has had zero reads so far).
Still, based on your topic, that seems like the "right" place to post
it on the wiki. Perhaps by posting some strong positions, and calling
people's attention to it on the google group, you'll cause the amount
of discussion to increase.
As for the content of you post, I'll have to think about it some more,
but based on some of Arien's comments at the last IG meeting, I think
we'll need to be careful about just saying "NHIN" (with no qualifying
words) as a label. NHIN as it existed prior to NHIN Direct is now
called "NHIN Gateway," and "NHIN Direct" isn't the same thing, as Doug
Fridsma's and Arien's presentations consistently point out in their
diagram showing NHIN Gateway, NHIN CONNECT, NHIN Exchange, and NHIN
Direct as four parallel things. Just saying "NHIN" without a word
after it could be too vague a label. And for NHIN Direct to make
overall decisions regarding what can or cannot have the phrase "NHIN"
associated with it, seems to be overstepping its focus. Some of your
thread sounded to me more like NHIN Gateway rather than NHIN Direct,
when you spoke of "registries"and "HIOs that store patient
information." To me, that's not what NHIN Direct is about given the
bounding definition of "point to point among known recipients" but
what NHIN Gateway is about.
Despite having said that, I agree it makes sense to have a position
how patients would be sources and destinations of NHIN Direct
communications. Such communications are after all, in the User Stories
(five Priority 1, and one Priority 2 story).
David
On May 23, 6:39 pm, "agrop...@medcommons.net" <agrop...@gmail.com>
wrote:
Thanks for putting this stake in the ground. I think it deserves
discussion, and seems a good fit within the "Individual Involvement"
workgroup on the Wiki.
Ironically, though, this particular set of pages has had very little
discussion thus far, compared to others. I.e., our "individuals" are
not very "involved" at least not in discussion threads.
The main page has zero discussion, and there's a page for "patient-
provider issues and implementation"
http://nhindirect.org/message/view/Patient+to+Provider+Issues+and+Implementation/24472275
which has only two discussion threads (I posted one last week, which
has had zero reads so far).
Still, based on your topic, that seems like the "right" place to post
it on the wiki. Perhaps by posting some strong positions, and calling
people's attention to it on the google group, you'll cause the amount
of discussion to increase.
As for the content of you post, I'll have to think about it some more,
but based on some of Arien's comments at the last IG meeting, I think
we'll need to be careful about just saying "NHIN" (with no qualifying
words) as a label. NHIN as it existed prior to NHIN Direct is now
called "NHIN Gateway," and "NHIN Direct" isn't the same thing, as Doug
Fridsma's and Arien's presentations consistently point out in their
diagram showing NHIN Gateway, NHIN CONNECT, NHIN Exchange, and NHIN
Direct as four parallel things. Just saying "NHIN" without a word
after it could be too vague a label. And for NHIN Direct to make
overall decisions regarding what can or cannot have the phrase "NHIN"
associated with it, seems to be overstepping its focus. Some of your
thread sounded to me more like NHIN Gateway rather than NHIN Direct,
when you spoke of "registries"and "HIOs that store patient
information." To me, that's not what NHIN Direct is about given the
bounding definition of "point to point among known recipients" but
what NHIN Gateway is about.
Despite having said that, I agree it makes sense to have a position
how patients would be sources and destinations of NHIN Direct
communications. Such communications are after all, in the User Stories
(five Priority 1, and one Priority 2 story).
David
On May 23, 6:39 pm, "agrop...@medcommons.net" <agrop...@gmail.com>
wrote:
agro...@gmail.com
May 25, 2010, 8:42:06 AM5/25/10
to nhindirect-discuss
David,
I noticed the same thing as you about the Individual Involvement group
so I was hoping that by posting here I would get some guidance from
the Wiki architects. The main page doesn't list single out any
particular member as chair.
Adrian
On May 24, 3:46 pm, David Tao <dta...@gmail.com> wrote:
> Adrian,
>
> Thanks for putting this stake in the ground. I think it deserves
> discussion, and seems a good fit within the "Individual Involvement"
> workgroup on the Wiki.
> Ironically, though, this particular set of pages has had very little
> discussion thus far, compared to others. I.e., our "individuals" are
> not very "involved" at least not in discussion threads.
>
> The main page has zero discussion, and there's a page for "patient-
> provider issues and implementation"http://nhindirect.org/message/view/Patient+to+Provider+Issues+and+Imp...
I noticed the same thing as you about the Individual Involvement group
so I was hoping that by posting here I would get some guidance from
the Wiki architects. The main page doesn't list single out any
particular member as chair.
Adrian
On May 24, 3:46 pm, David Tao <dta...@gmail.com> wrote:
> Adrian,
>
> Thanks for putting this stake in the ground. I think it deserves
> discussion, and seems a good fit within the "Individual Involvement"
> workgroup on the Wiki.
> Ironically, though, this particular set of pages has had very little
> discussion thus far, compared to others. I.e., our "individuals" are
> not very "involved" at least not in discussion threads.
>
> The main page has zero discussion, and there's a page for "patient-
David Tao
May 25, 2010, 10:27:28 AM5/25/10
to nhindirect-discuss
Adrian,
It's surprising that the chair is not listed on the wiki. But it is
documented in the Implementation Group presentations --
http://nhindirect.org/file/view/NHIN%20IG%2005182010.pdf (see slide
17) --
that the leader of the Individual Involvement WG is Richard Elmore
David
On May 25, 8:42 am, "agrop...@medcommons.net" <agrop...@gmail.com>
wrote:
It's surprising that the chair is not listed on the wiki. But it is
documented in the Implementation Group presentations --
http://nhindirect.org/file/view/NHIN%20IG%2005182010.pdf (see slide
17) --
that the leader of the Individual Involvement WG is Richard Elmore
David
On May 25, 8:42 am, "agrop...@medcommons.net" <agrop...@gmail.com>
wrote:
Reply all
Reply to author
Forward
0 new messages