Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Wednesday, October 03, 2018

Once Over Lightly On All Those Submissions To The Senate myHR Inquiry. There Are Some Very Clear Messages!

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.


Anonymous said...

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.

There 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

Bernard Robertson-Dunn said...

Has anyone seen in the submissions, or anywhere else for that matter, how the government expects to fund this thing in perpetuity?

They 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.

Anonymous said...

I think the dog ate it Bernard.

The 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

Anonymous said...

Submission 113 puts forward a nice set of arguments IMHO.

Anonymous said...

Care.data, NHS Choices, NHS Apps, Telstra, ADHA, MyHR - could it be six failures in a row for Tim Kelsey?

Anonymous said...

There 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.

Anonymous said...

Just 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.

Anonymous said...

@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.