[LINK] The "health" record security model

[Jim Birch]

Hi Jan

There are three basic reasons for having a shared health record

1. To help the patient by treating their conditions.  Primary benefit goes
to the patient.
2. To help the health system: to make the system more efficient, basically
to treat more people and/or treat them better at the same budget.
3. To aid medical research.

As befits our narcissistic times, the debate is basically around item 1,
ie. ME!!!! (Multiple exclamation marks intended.) What are my benefits v my
risks, etc.  If you're promoting the system, you promote the benefits to
the individual; if you're against it, you deny that there are any benefits
and talk about the risks.

Item 2 is the one that influences the government.  It indirectly affects us
all who pay taxes or receive the benefits of taxes because we pay less tax,
or get better healthcare, or we can get something else.  Healthcare costs
are rising faster than most other costs to a significant degree because we
are treating more things, better.  Medicine is empirically better than it
was two decades ago.  Healthcare is already a major government budget item
and if the rise continues it will become the major budget item.  I'm pretty
ok with this.  Healthcare is basically good, ie, more diseases cured or
better managed, statistically means longer happier lives. However, because
it is such a big ticket item we want it to be as efficient as practicable.
In practice arguing for efficient use taxation is boring accountancy stuff
and doesn't get much of a run, except for the periodic shock/horror value
of some bit of government profligacy.

Item 3 is actually the deep benefit, the one we should be considering if we
are interested future generations as well as ourselves.  Suppose everyone
decided a thousand years ago to forego 1% annual growth for an easier life,
or because change was disturbing, or whatever, we would now be nearly as
poor as the average person was a thousand years ago.  Thing weren't too
good by current standards.  Sure there weren't problems with plastic bags,
but there was a lot of starvation and the chance of a kid making it to age
10 was about 50%.  Improvement is medicine operate in a similar way, it is
cumulative.  If you're concerned about not leaving a planet decimated by
global warming you should also be concerned about creating better
medicine.  Currently there are there are a lot of treatments that don't
have an established benefit case.  The gold standard in clinical trials is
currently the randomised control trial.  They are difficult to set up and
cost a lot.  The usual problem is getting enough numbers from the available
budget to get a statistically significant result.  The big data approach
that a common shared health record provides is a way around this.  It won't
give the same information as an RCT but it has great potential.  Once the
system gets going we have  a n=25000000 natural experiment running.
Medical researchers are rubbing their hands.

Back to your original question on how long is medical history useful.

Purpose 1: Short term if you get better, longer as a managed condition.
Purpose 2: Longer term, it allows treatment of the population to be
optimised for the available resources.  Including people who haven't got
the disease yet.
Purpose 3: Forever, well, almost.  These are actually lifetime longitudinal
studies in large numbers.  And the benefit is not just to us but to future
generations because medical knowledge is not consumed (like medical
treatments) it is a persistent good which accumulates.

Purpose 3 is actually the big net benefit for everyone now and in the
future but it is slow and impersonal.  It's the hardest to get people to
think about.  You probably won't die of global warming; you won't be
probably saved be saved by medical knowledge generated from medical records
but there will be incremental improvements in treatments that accumulate.

Jim