[Kbi-webcivics] [IA - members] MyHealth Record

[Todd Hubers]

Hi Tim,

As usual, you have plenty of insightful things to say. The improvement of
healthcare is truly a worthy goal, but not if that means dragnetting data
against citizens. But with so much information and ideas to cover: I think
progress would be achieved with goals and a strategy.

Strategically, there is a limited amount of impact I believe we could have
in this particular group. I would also suggest that "Privacy" alone isn't
enough of a reason for the majority of the population, so that line of
conversation will benefit the privacy-concerned, but won't appeal much
broader than that.

If you can summarise distinct problems in dot-point forms that would be a
great asset. Here are some of my own to kick-start:

1. *Can a citizen "withdraw"?* - There is a lot of talk about opt-out and a
deadline. One would think that a person's situation and beliefs are not
static. If withdrawal is not a planned mechanism, that's very problematic.
Actions would be: highlighting this to relevant groups to lobby for such a
mechanism to be created.

2. *Is there a better design?* - I would think that a self-sovereign
(SOLID?) framework would be a more direct 1:1 digital conversion. It would
be one where you have total control over the data, and choose who can
"view". Currently, people manually carry records (and quite a lot are sent
digitally Org to Org directly). Actions would be: signalling the open
source development of a self-sovereign platform, and have people opt-out,
not because they are concerned about privacy, but because they want to
influence the Government to evolve to the better solution.

Any more high-level points?

(I was involved way back with NeHTA, PHR, and other related systems. There
is much controversy beyond an "opt-out" model. But I do hope that something
will succeed given that over $1bn was spent on this.)

Cheers,

Todd

On Wed, 18 Jul 2018 at 12:58, Timothy Holborn via members <
members at lists.internet.org.au> wrote:

> I would call it data dignity, noting in my opinion, the best person to fix
> that is the internationally extraordinary Hon. Michael Kirby, but we'll
> need to do some internal work prior to making best use of his time.
>
> On Wed., 18 Jul. 2018, 12:40 pm Ian Mann, <ianmann897 at gmail.com> wrote:
>
>> I fully appreciate your concerns about data privacy and control. I
>> recall in Germany in before WW2 all Jews had to register, and that
>> registry was used later to exterminate them.
>>
>
> I am sure the registries were full of all sorts of claims made by the
> government at the time...
>
> The temporal process, through which "verifiable claims" are evaluated is
> hygienic, but also a series of features that may be considered "out of
> scope".
>
> It is not the job or public servants to fix that. It's the job of the
> people to do so, in any working democracy with a functional system of
> government.
>
> One might wonder how functional ours is, if reasonable considered today.
> Do public servants understand the legal rules in which their work as agent
> relates?  Does it not matter, as most data is governed by international
> contract law + support for foreign affairs / law enforcement workers ..
>
> Do they believe reducing the available funding for civil society groups
> will improve the results formed in their eco-chambers?
>
> The worst thing, in my opinion, that they did to jews in WW2 was not
> death; it was the requirements put upon them on the basis they sought to
> continue to live and what that did you their humanity, what was required of
> them to decide, agreeing upon a set of human rights was a good idea.
>
> Even still, even today, we're defending those decisions...   Go figure.
> It's a police prosecutors job to defend the actions of police, it is not
> their job to uphold the law.  That's why access to lawyers is prohibitively
> expensive, as to diminish the means for a judge, a court to hear about
> unfairness...
>
> Same series of beliefs are manifesting in our health system and it'll be
> more expensive than the cost born by way of the failures of our legal
> systems.
>
> Imho & cheers,
>
> Tim.
>
> On Wed, 18 Jul 2018 at 12:36, Timothy Holborn <timothy.holborn at gmail.com>
>> wrote:
>> >
>> > It is my opinion that the manner in which someone, or group of people,
>> store your data...
>> >
>> > They'll be able to review your decisions, temporally, as they've been
>> made in past with increasingly improved resolution.
>> >
>> > My view is that you, or those nominated in your last will and
>> testament, should be the people who control how this 'inforg' works.  You
>> should not be limited as to what you can store in it, but rather, how and
>> what others see; and whether their able to rely upon it, to make decisions
>> that affect you and others.
>> >
>> > I think this is an important decision to make.  I think currently,
>> there is very little technology services (if any)to make it.
>> >
>> > Facebook is default.  Government seems to be making attempts to
>> compete, rather than redesign.  It's a marketplace problem, We need one.
>> We need to define the rules of engagement, what "fair dealings" means, "in
>> good faith", for the information age...
>> >
>> > Tim.
>> >
>> > On Wed., 18 Jul. 2018, 12:28 pm Ian Mann, <ianmann897 at gmail.com> wrote:
>> >>
>> >> Yes Tim a lot of beneficial things have arrived as your introductory
>> >> paragraph says.
>> >>
>> >> I am sure some not so beneficial things are there too, but on balance
>> >> I would never wish to return to the past days even if it were
>> >> possible.
>> >>
>> >> I watched a documentary called Ghost land a while ago where they took
>> >> Kalahari Bushmen to Germany. The first part of the documentary shows
>> >> the Bushman current life.
>> >> Then hey go to Germany and vist their first city ever.Once our own
>> >> ancestors lived that way I thought.
>> >>
>> >> https://www.youtube.com/watch?v=iCfcxAbbShY
>>
>>
>>
>> --
>> Ian Mann
>> Mobile 04 7859 7859
>> International +61 4 7859 7859
>> Home International +61 2 4873 5444
>> 10 John Street, GOULBURN NSW 2580
>>
>
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Todd Hubers

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