
Your private medical data is for sale and driving a business worth billions - kafkaesq
https://www.theguardian.com/technology/2017/jan/10/medical-data-multibillion-dollar-business-report-warns
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TeMPOraL
The subheadline says what I've been writing over and over again here: there's
no such thing as "anonymized data". There's only "not enough other data to
correlate out identities".

~~~
falcolas
It's not as catchy, but you should probably add "until combined with other
data sets."

~~~
TeMPOraL
"There's no such thing as "anonymized data", there's only "anonymized until
combined with other data sets"." Sounds catchy to me. Thanks!

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alexmingoia
Great. I hope my medical data is sold so they can use it to improve my
healthcare.

Americans are hysterical when it comes to healthcare privacy. Meanwhile, the
rest of the world carries on leaving us behind.

When I was in Taiwan, people had national cards that carried a digital history
of their medical records on the card. When I explained this to a nurse here in
the US she looked at me like I was crazy. Like I had suggested we send men to
mars.

~~~
pasbesoin
Several decades ago, when trying to purchase individual health insurance
(didn't currently have an employer-enabled option), I was denied because of a
single visit to a psychologist within the requested two year medical history
(time frames for these have since greatly expanded).

Not for ongoing treatment, but for _one isolated appointment._

And this was for a plan that provided very limited mental health benefits,
anyway.

More recently, I was -- belatedly, and after several years of mis-diagnosis of
occasional minor discomfort -- diagnosed with a very minor hernia. The well-
regarded surgeon I was referred to said he would not operate on it; it was too
minor. The prudent course of action was to leave it alone.

Nonetheless, when subsequently (once again, due to the nature of the U.S. job
market and health insurance's codependent relationship with it) attempting to
purchase private insurance (this was before the ACA), I was initially denied.
This time, the insurer made some minor error in processing my application, and
I happened to have an influential connection to another company that had a
partnership with that insurer. Someone with whom I'd had a long professional
relationship was able to leverage this to get my application re-evaluated, and
eventually I was offered a policy... I'll just say that this did not come as
the result of normal channels. I still had to accept an exclusion for the
condition.

Americans are hysterical about their health care privacy for very good
reasons. In other countries, such data might be accumulated and used in
epidemiological studies and in efforts to provide better, more effective, and
more cost-effective care. It makes sense to mine such data for such insights.

Here, in the U.S., such data are accumulated by private interests that profit
by turning "insurance" into cherry-picked participation and discrimination.

Every transition, every "life event" that has a participant re-acquiring
health insurance, is worked to the maximum to exclude those who are most
likely to claim benefits. And with the ever increasing instability in the U.S.
labor marketplace, such opportunities increasingly abound. People increasingly
don't stick with one company for a career or even a significant fraction of
one. And particularly at more elevated ages, when health care needs tend to
increase, a career transition is likely to leave you with no employer-provided
health care insurance.

As I sometimes say, it's like we in the U.S. are paying "whole insurance"
rates for what has effectively become "term insurance."

The ACA addressed this, to some extent, although the prices were getting out
of control due to weaknesses engineered in by the opposition as it was written
and fostered after it was enacted by e.g. hamstringing the law through lack of
budget allocations.

I fear for what is to come. Where every bit of health care data on me is once
again used not to further science and effective treatment, but rather to
exclude me if and as soon as I start to look like an expense.

Americans are paranoid about their health care privacy for damned good
reasons.

And I didn't even begin to address the topic of employer discrimination. Many
of you are familiar with this with respect to age -- common in the "tech
world" and particularly "programming." Health is another, similar vector.
Yeah, there are laws, supposedly. And then there is reality. And... age as a
simplistic, non-specific means of assigning a speculative health rating to an
applicant. One that nobody needs to address in subpoena-able fashion.

I believe a crucial component of enabling better treatment through data
sharing and mining, would be to ensure -- with some very strong laws with
felony penalties for violation -- that said data are _never_ used to
discriminate against individuals nor categories with respect to health
insurance coverage nor pricing.

If you're healthy, you're blessed. If not, society's got your back. Not for a
"free ride", but for the care you need to live the best life you can -- one
that hopefully, in turn, benefits us all.

And health care coverage helps keep small, less expensive problems from going
untreated and growing into large, expensive ones. It's not just moral, by most
people's definitions; it's also cost-effective.

P.S. At least, this is my view. Recently, I've been struggling with the
observation that while this seems to me to be both rational and compassionate,
much of the world persistently does not work this way and apparently shows
little inclination to really begin to do so.

It's a pretty lonely feeling, as this continues to sink in. I've kept hoping,
for years, things will get better. Believing in "progress." But I'm losing
that hope, with respect to human nature. Particularly in larger, significantly
anonymous groups and where local disparities can and are arbitraged by larger
entities to the detriment of individuals.

Where "humanity" is removed from consideration and every possible cost is
externalized. Where no one is accountable for the failures.

Anyway. It would seem we have a lot to learn from each other. But that
knowledge is being hijacked by systems -- people -- using it to pit us against
each other.

~~~
alexmingoia
Discrimination should be addressed by laws against it, not by locking up
medical records to the point that t literally kills people and damages our
healthcare system. Same with preexisting conditions. Again other countries
don't have this problem.

~~~
pasbesoin
Well, look at what is happening to the ACA, which was a step in that direction
with its elimination of pre-existing conditions as a factor used to determine
whether to offer insurance.

Americans have learned the hard way that people can and will use their health
care information against them. And that even commitments in law towards
eliminating this face strong counter-pressure and reversal.

The reality is discrimination. And there is no reliable, dependable change to
this on the horizon.

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DrScump

      ...*conservative justices* ruled in favor of IMS Health and against the attorney general of Vermont...
    

It was, in fact, a 6-3 decision, with even Sotomayor and Kennedy in the
majority, _upholding_ the decision of the Second Circuit.

~~~
blakesterz
Somehow I've never hear of this one, that's quite a ruling:

"Vermont argues that its prohibitions safeguard medical privacy and diminish
the likelihood that marketing will lead to prescription decisions not in the
best interests of patients or the State. It can be assumed that these
interests are significant. Speech in aid of pharmaceutical marketing, however,
is a form of expression protected by the Free Speech Clause of the First
Amendment. As a consequence, Vermont’s statute must be subjected to heightened
judicial scrutiny. The law cannot satisfy that standard. "

 _Speech in aid of pharmaceutical marketing_

