[Kbi-webcivics] MyHealth Record

[Timothy Holborn]

I was alerted to the health-records 'opt-out' situation going on, and note
it is an area of interest; whilst also considering, the area to be 'high
stakes' in nature and therefore not a preferred innovation field at first
glance.

*TL;DR summary:* heath is a tricky area - if anyone is interested in
work-shopping solutions around this area, in relation to the beneficial
owner of health information relating to a 'data subject' being the 'data
subject' (aka - knowledge banking SIG work) let me know.

For those not currently on the Knowledge Banking SIG list - please fine
link: http://lists.internet.org.au/mailman/listinfo/kbi-webcivics

*Long-form* *series;* of thoughts and considerations below,

The problem thereafter becomes, that whilst dignity preserving intentions
are to get things right before messing with peoples health; the 'status
quo' processes underway may not be so considerate of others.  It is
certainly my experience that there are alot of flaws in the area; noting,
my family have been involved in the healthcare sector for many generations
and through this heritage, i have an awareness of the health-records
systems and related processes, since i was a child; noting,

pathology companies needed a way to disseminate results as quickly as
possible.  Indeed, my homework was often done in the room filled with old
green-screened data-entry workstations...  with my mother answering the
phone, for inbound emergency requests by clinicians.

I believe the 'opt-out' process is soon closing, but find link here[1].

I think there are a variety of issues in this area; and am interested to
hear if people are interested in work-shopping it.   There are massive
problems with ensuring timely supply of good healthcare services; there are
also massive problems with data-quality, data-hygiene, the means to correct
false statements made, the means for the interests of citizens to be
represented on an individual basis; where the industry and government seek
to ensure an isolation based approach, which means, the means for people -
particularly those without any medical industry knowledge in their families
- to get good healthcare outcomes (rather than rent-seeking behaviours) is
increasingly more difficult.

>From my own observations, i have been concerned about the manner in which
medicare billing codes have seemingly been made use of commercially to
limit, the means in which medical services attend to patient issues; based
on a practice method, of solely responding to the request outlined by the
particular medicare billing code.

conversely; my grandfather, in the 80's/90's, had a microscope, a bunch of
slides and books; and the microscope was connected to a camera and
monitor.  I'm fairly sure, whether it be autopsies, tissue or fluid samples
- whatever he was trying to figure out clinically - he wanted to figure it
out, without caring too much about the 'medicare billing code' that related
to how he needed to go through a method of enquiry to figure it out.

Australia is currently making a migration to RDF (knowledge banking
compatible - structured data formats) by way of SNOMED CT‑AU which provides
the ontological structures required to map everything out.  I was involved
in a project briefly, donating my time to some young doctors who wanted to
make an OSCE[2] app and found many worrying issues; that make alot of
sense, from a 'consumer' point of view.

I am particularly worried about doing serious work in this area, given the
enormous powers at play; and overall, the stakes.  but if others are
interested in looking at how to explore the means in which the beneficial
ownership of data relating to your health and welfare may be considered to
be beneficially owned by you, rather than you being defined by others,
based on the interests of their business systems (and the failing of such
apparatus) - let me know.

It's certainly a big problem area - particularly in relation to mental
health which has direct relationships to many security, crime and welfare
issues moreover.

Whilst i state again - it is my view, that testing systems out is better
done on things like - who is watching the footy, or what ad's you want to
get when your watching it, or what the relationship is between your
'opt-in' to get a test-drive of a car you might buy, and the privacy
framework relating to the use of that TV by yourself, your children and
your friends.

the other fields relating to health include statistics.  I am aware of
several areas of complex social-studies where no reasonably good level of
statistics are available, to which the statement is that its either too
expensive or too hard due to privacy.  Health is a dignity issue, keeping
someone unhealthy as to preserve their privacy does not improve quality of
life and is in my opinion, a breach of the hippocratic oath -noting, i'm
not sure what the equivalent of this oath is, for those involved in
web-science / data-science, and the governance of such capabilities in the
interests of public good.

Having an unconscious trauma patient die, due to not being aware of
important facts that could be made known by way of a medical records system
- isn't a good outcome.

Having a misdiagnosis by a person working in a hospital who is not
qualified to make diagnosis, in a manner that contravenes those that do, as
to provide external parties false and misleading information, that is
in-turn stored in their databases; whereby the subsequent cost of
negligence and the means to resolve what has been formed is left without
consideration, as it is not in the interests of the insurance policy /
provider, held by the organisation responsible for any such bad-agent;
that's no good either.

and what happens if everyone reads and starts to take control of their own
medical records... how many people want to talk about these very sensitive
personal matters, particularly if they say things in those records that
could prevent those people from their current standing of gainful
employment.  If it means, on medical grounds, they're unable to engage in
their field of professional endeavour.  What if the misdiagnosis, results
in the would-be patient being left without treatment for something that is
treatable, but different to what they'd been harmed by having it stated,
with impunity, they suffered from.

What if it's not that they're crazy, but that they've got blood pressure
problems and no-one checked.  What is the responsibility of the patient,
and the responsibility of the clinicians and the staff that support their
functions.  What is the responsibility of government, to ensure appropriate
tests are made available; rather than forming means to have founded any way
in which public funds are in-effect, misused, through the continued
treatment of symptoms for a treatable circumstance of condition.

What if those processes; are politically inconvenient, but that it is made
by structure - to ensure the voices of others do not count.

We can issue (and rescind) credentials in dynamic and complex ways..   I
don't think those working on these problems in government, feel as though
they have the support they need; to get the job done in a manner they're
more comfortable with having participated in doing; therein, that it is
important to understand the distinction between the role, and the forum.

right now - i believe we have an insufficient capacity to form forum; and
my now long-email, is certainly looking for expressions of interest, to
make progress.  As previously noted -  the SIG TOR is under development[3]
please feel welcome to contribute.  Additionally, i've set-up the Slack
group[4] as an interim measure.

Tim.

[1]
https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record

[2] https://en.wikipedia.org/wiki/Objective_structured_clinical_examination
[3]
https://docs.google.com/document/d/1xKHONGoepiq29r7NMB9T6yd6kPcfWY2JsaDzK6OqnHE/edit?usp=sharing

[4]
https://join.slack.com/t/webcivics/shared_invite/enQtMzk5MDA2NTMyMDk4LTU0OGQzMGI1ZGIzODBiMDBjYmMzNDRkMmE1ODI0YzBiNTdmMzY2MGQ3NDNlYzhkYzU1OTU3NjMzYmU5YjY1ZTc

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