On 14/03/2018 14:57, Philippe Ameline wrote:
Le 14/03/2018 à 12:41, Thomas Beale a écrit :
so the long term solution is healthcare data and major services
(workflow / process) must eventually be part of a back-end system that
isn't owned by any product vendor or care delivery location, but
instead managed on behalf of the patient by a trusted third party.
Why do you believe that a third party is necessary/useful?
In my opinion, your (health) information is yours and you can manage it
yourself in a personal cloud or with a Ligne de vie.
well, IT-savvy people can do that. But realistically, everyone will pay
a company to do that, and then you have to start thinking about what
your contract with the company looks like. Do they respect GDPR? Do the
implement privacy and security? Do they guarantee permanence?
Performance? Availability? Record transfer to other countries, cloud
storage etc? And so on. At the very least, the cloud-side data manger
has to provide a running instance of openEHR, or Ligne-de-Vie or
whatever. Will they keep it up to date? Whose implementation? Etc.
Some of these requirements can be provided by generic cloud storage
companies, but many will require a dedicated e-health data manager kind
of organisation. Now, if this is commercial and profit-oriented, with no
proper governance or regulation, there are serious dangers (data being
onsold to pharma and insurance companies, data loss and so on).
Then we have to consider the need for convenience. IN large socialised
health systems - UK NHS, most EU countries, and any large US HMO (Kaiser
Permanente etc) does it really make sense for each person to have to go
shopping for a place to put your lifelong health record? So when you put
all this together, a relatively small number of organisations that
provide this service, in an ultra-reliable way will be needed. Doing it
with cheap personal cloud will seem ok, until it is discovered that
people are losing their passwords, forgot to pay the cloud provider
bill, changed cloud provider but forgot to transfer their data and so
on. Medical errors will result from that, so I don't see it as a viable
path.
I would say: the term 'patient' just gets demoted to meaning a
client/supplier relationship that sporadically occurs between a person
in a health system, and the health system's healthcare provider
organisations.
OK. And the pivotal term here is "sporadically".
When switching from the (health) organization reference frame (still
cameras fixed on the walls) to the person's reference frame (head
mounted real time camera), you switch from a set of specialized sporadic
encounters to a life long holistic management (that includes sporadic
health related encounters). This is the reason why the term "patient" is
not consistent here.
theoretically that's true, but I don't think it's an important point
because I think everyone knows that 'patient' stands for 'person, when
obtaining healthcare'. I don't think the word 'patient' is going to
disappear from the healthcare lexicon anytime soon...
- thomas
--
Thomas Beale
Principal, Ars Semantica <http://www.arssemantica.com>
Consultant, ABD Team, Intermountain Healthcare
<https://intermountainhealthcare.org/>
Management Board, Specifications Program Lead, openEHR Foundation
<http://www.openehr.org>
Chartered IT Professional Fellow, BCS, British Computer Society
<http://www.bcs.org/category/6044>
Health IT blog <http://wolandscat.net/> | Culture blog
<http://wolandsothercat.net/>
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