As of the time of writing there are
about 117 Submissions that can be downloaded and read:
Here is the link:
Now I am not going to claim that I
have read each of the Submissions in detail but as most of them have responded
to the Terms Of Reference questions it is possible to gain some useful
insights. Among these are:
1. I did not notice a single responder
who felt the ADHA Communications process was worthy of congratulations and
indeed most remarked how hopeless / useless / un-inclusive it had been.
2. I did not notice a single
submission that talked of proven results and benefits from the program so far
- since 2012. The benefits were all
possible, coming later, likely and so on.
3. Not a single submission said the
myHR was totally secure and would never be hacked / penetrated. All to a person
expected some breach at some point.
4. I did not spot a single
submission that said the myHR was finished, useful and a thing of great utility
and wonder. Many seemed to use the word ‘potential’ and seemed to be basing
their enthusiasm on said potential – not the system as it currently exits.
5. There was a lot of support for
the opt-out process to lead to a myHR that was securely closed until its owner
set their preferred security settings.
6. Many submissions noted the issue
of the digital / wealth / mental health divide and expressed concern as to how this
would affect the overall system usage etc.
7. The issues of the problems around
juvenile control of their record and around domestic violence were all seen as
real – with the expectation that affected individuals being aware of how to
control access etc. being a pretty unreasonable ask.
8. Many who submitted felt the
opt-out period needed a serious extension.
9. Those who mentioned the issue
felt the audit trails for access to the system needed to work at the individual
and not the organisational level.
10. There seemed to be agreement
that the System also needed a great deal of work in functionality and utility
to have any hope of delivering on its ‘potential’.
The RACCP Submission was pretty
typical of many. It is Submission 74 if you want to browse.
Executive summary:
The RACGP welcomes the opportunity to
provide written comment to the Senate Community Affairs References Committee
inquiry into the My Health Record and our key recommendations include:
·
strengthened
privacy and security legislation to improve consumer and clinician confidence
in the My Health Record system
·
increased
communications with consumer groups to improve digital health literacy to
ensure consumers are informed about what My Health record is, the My Health
Record expansion and how they can use the My Health Record to participate in
their healthcare
·
targeted
consumer education on the My Health Record consumer controls, how the record is
activated and the impacts of the current standing consent process regarding
information uploaded and viewed by healthcare providers
·
better
articulation of the role of My Health Record as a consumer controlled record
and the associated high value use cases
·
improvements
to the record activation process , whereby patients who have their record
initially activated at a healthcare organisation are required to provide
consent for such activation with evidence of this consent stored by the system
operator
·
strengthening
the current privacy and accessibility provisions of minors healthcare
information by authorised representatives.
·
strengthening
individual provider and other healthcare staff audit logging
·
removing
consumer addresses from documents uploaded to My Health Record
·
continuing
to support a national rollout of direct secure electronic communications
between healthcare providers
·
an
additional incentive is introduced for general practice that is service-based
which is paid to the individual healthcare provider responsible for upload, and
supports the upload of accurate, high-quality data.
----- End Exec. Summary
The proof of the pudding will
now be eating. It these outcomes are reflected in the Senate’s Final Report
that would be good. Anything less would be a betrayal of those who have
bothered to submit.
David.
Agree David I have read through most and made sure I selected a good balance of submissions. It is difficult to come away feeling the Government system has any real role to play. It is clear the top ranks of ADHA leading the MyHR has failed dismally. Not only in the communication aspect but also failed to build a system to support the optout and make utility.
ReplyDeleteThere is also this little shameful matter - https://www.themandarin.com.au/99485-how-health-dept-officials-muscled-the-parliamentary-library-into-deleting-my-health-record-analysis/
As for inaccuracies- the ADHA cannot claim it has never released data from the system in six years. They have only existed for two years
Has anyone seen in the submissions, or anywhere else for that matter, how the government expects to fund this thing in perpetuity?
ReplyDeleteThey have always assumed in the past that the enormous benefits would easily cover whatever costs it might incur.
AFAIK they have never done a proper cost benefit/analysis i.e. one that includes all costs (i.e. those of heath providers and patients), not just the costs of the IT system and ADHA.
The labor party must be looking at this fiasco and be wondering if it is all worth it. If they aren't, they should be.
I think the dog ate it Bernard.
ReplyDeleteThe way the funding models are setup to track actual cost impacts, dis-benefits and assumed future value would be difficult at best. That is of coarse not a reason for it to be missing from the public record
Submission 113 puts forward a nice set of arguments IMHO.
ReplyDeleteCare.data, NHS Choices, NHS Apps, Telstra, ADHA, MyHR - could it be six failures in a row for Tim Kelsey?
ReplyDeleteThere is certainly some great perspectives in these submissions. Bernard you folks at the APF have done a fine job. Hopefully the senate committee are bold in their final report. I have slaved at the ADHA for more than a year and needed to read these submission to reaffirm my creeping doubts.
ReplyDeleteJust an observation - the myhealthrecord Twitter is not exactly demonstrating a successful marketing campaign. 1300 odd followers for a $100 million dollar communications campaign is hardly successful.
ReplyDelete@myhealthrecord only tweets to #myhealthrecord so they are shouting into their own little echo chamber. IMHO, they are doing this quite deliberately. The more people who hear about the thing, the more who will opt-out.
ReplyDelete