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Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"


H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Sunday, July 01, 2018

It Nice To Have Some Actual Data Regarding Feelings About The myHR Among The Public.

This appeared last week and is reproduced with permission:

What do Australian women think of My Health Record?

The Australian government has met with difficulties in persuading Australians to register with its national electronic health record system, My Health Record. Just one in five Australians have a My Health Record. I have just submitted an article for peer review that reports on the findings from the Australian Women and Digital Health Project in which the participants talked about their attitudes to and experiences with My Health Record in interviews and focus groups. As the Australian Digital Health Agency moves towards an opt-out process to register as many Australians as possible, the findings from this study offer important insights into what Australian women think of My Health Record.
The full preprint version of the article can be accessed here: Article – My Health Record preprint.
Here are the major findings:
  • Despite their generally highly engaged use of online health and medical sources, awareness and use of My Health Record was quite low among the participants. When asked if they had signed up to My Health Record, only a third (24 out of the 66 participants) answered that they definitely had enrolled themselves. Nine women said they weren’t sure or couldn’t remember if they had registered, while the remaining 33 women responded either that they had not heard of My Health Record or they had decided not to sign up.
  • The women who had registered for My Health Record said that they had done so because of the benefits they could see of being able to have a digital health record that could be shared across providers. None of the women who had registered for My Health Record made any reference to the opportunity to be able to view their health records themselves or add to them. As this suggests, there was little awareness among the participants that My Health Record had been initially designed as a patient engagement tool as well as a platform for storing their medical information and sharing it with their healthcare professionals.
  • Technical difficulties were major barriers to enrolling and using the system successfully. The problem was not just My Health Record itself, but the MyGov platform on which it was hosted. Several women made reference to other services on MyGov being difficult to access and use.
  • No participants had yet found any benefit or use for My Health Record. It was viewed more as a repository for the use of healthcare professionals than for women’s own active use as contributors and users of their data.
  • Several participants said that they regularly had to remind their doctors that they had a My Health Record, only to find that the doctors were not using the system or uploading information, and even discouraging patients from using it.
  • Recent publicity in relation to the Australian government’s misuse or lack of protection of citizens’ personal data have led to the participants demonstrating low levels of faith in the government’s capability to adequately manage My Health Record. Many participants also referred to their distrust in the Australian government to protect their medical information adequately. Government agencies were represented as incompetent rather than malicious, lacking the knowledge and skills to establish and maintain a national EHR system that was secure and effective enough to give them enough confidence or motivation to register and use it.
  • In summary, these findings suggest that the Australian government needs to provide adequate and appropriate information to the Australian public about My Health Record, and particularly the opt-out process and negotiating consent to data sharing. It so doing, it will have to address wider problems of the Australian public’s lack of trust in the ways in which government agencies collect, share, protect or exploit their personal data.
Here is the link:
The paper really addresses a lot of the issues which have been discussed here and elsewhere and seems to indicate that conversations on the blog are pretty well grounded and the views expressed reflect what you will be told if you ask the public what they think of the myHR and how it is being handled.
In extreme summary the ADHA still has a fair bit of work to do to get majority understanding, acceptance and awareness and seems not to really understand the skepticism many hold on the whole initiative and its actual potential benefits.
The preprint is well worth a download and read!


Anonymous said...

I wonder if Tim is starting to realise Australia is not the push-over he was expecting it to be. What is happening here is the same as happened in the UK for the same reason - he's in charge.

Anonymous said...

Hard to link the touted benefits to reality on the ground. We need more dinosaurs from the NHS, with the ADHA down a few senior executives, wonder if a couple of speakers at HIC this year are only here for HIC?

Anonymous said...

Unfortunately this report like the probably privacy misuse from HealthEngine will be swept under the carpet.

Bernard Robertson-Dunn said...

'There are dangers': GPs issue warning over walk-in pharmacy health checks

Let's see.
* GPs do not seem to be in favour of pharmacists doing health checks.

* Pharmacists want to get more involved in monitoring patient's medication and input data into myhr.

* The government wants to raise the bar re myhr and ePIP. i.e. spend more time putting data into myhr.

* The government has extended its freeze of medicare payments to GPs "The indexation freeze commenced in July 2015 and was originally intended to end in July 2018. It will now continue until at least July 2020."

* The article 'There are dangers' says: "... many Australians were avoiding their GP because of costs and time constraints."

The key to the success or otherwise of myhr is not patients, it's GPs. They will advise their patients and may or may not use the system.

The government needs the active co-operation of GPs. GPs need full and accurate information about all aspects of the system but I'm not sure they are getting it.

That's why I wrote this:

Anonymous said...

An excellent article Bernard, well researched and nicely put forward. With reference to the ABS, readers might find this interesting, it certainly raises the question - is this an isolated event or standard practice?


Bernard Robertson-Dunn said...

Re the ABS, I have no doubt that the ABS people will follow the rules and do the right thing when it comes to data/statistical analysis etc. I have spoken with people there and they are fully aware of the problems with de-identification and in making data available to research bodies outside government.

However, I am not so sure about the government's intention when it comes to linking health data with other data "to help government agencies and researchers respond to nationally important policy and service delivery questions." as explained on the ABS' MADIP page. It's a bit too vague.

It comes down to openness, transparency and trust.

Re the KPMG reference, use of the big four accounting firms are making government around the world a bit nervous.


Bernard Robertson-Dunn said...

Re my article "My Health Record: on a path to nowhere?"

A couple of observations.

As of 9:30am this morning there have been 13 Comments, most in agreement, two, from Brendan Wickham. discussing (arguing about?) some of the issues but not IMHO seriously disputing the thrust of the article.

The 13th comment is interesting in that it comes from Mukesh Haikerwal, ex head of AMA and NEHTA's top clinical lead (assuming my search engine has it correct).

This is his comment:

"Bravo Bernard: an excellent piece. I hope it is widely disseminated read and heed paid. The push has become a hefty shove. Citizens have a 3 month window to opt-out of being opted-in to what will become an out-out system. What they really need is access to someone that can hold their hands and guide them – not on a web-site or podcast or YouTube video – but a real person explaining what the record is. How it works today. Aspirations for the future. How to log on and enable the security settings that are actually very good. For the x00,000 AHPRA registants and other eligible providers: have fun enrolling understanding and using – and being very visible!
'My [electronic] Health Record' – cui bono (for whose benefit)? – DRO: http://dro.deakin.edu.au/view/DU:30090274#.WzqbTY5VCeE.twitter"

I'm not sure I agree with his assertion about the security settings - myhr is designed to acquire and disseminate data into systems that are invisible to patients.

FYI, the poll numbers are also worth noting:
The question is: "My Health Record will improve patient outcomes"

Strongly disagree (51%, 74 Votes)
Disagree (23%, 33 Votes)
Neutral (15%, 21 Votes)
Strongly agree (8%, 11 Votes)
Agree (3%, 5 Votes)
Total Voters: 144

In other words about 11% of respondents (not necessarily GPs or health workers) agree that it will help patients.

The Medical Republic ran an online poll and published this in their printed version

"Around 140 GPs responded to a survey about MHR hosted on our website and e-newsletter earlier this month.

The survey asked GPs if they were going to eschew the government’s electronic health record system when the three-month opt-out period begins in July this year.

More two-thirds of respondents said “yes”.

Most GPs said they were opting out because they were worried about their own privacy and that of their patients, with particular concerns around the potential secondary uses of data. Others disagreed with how the system had been rolled out.

“I don’t think the MHR has been managed properly, and I’m “not paid to manage the process”, were two popular reasons cited for opting out.

“I don’t think patients should be able to edit their results”, “I have too much to do already,” and it’s “too time consuming for what it brings in effectiveness” were other popular reasons.

About 20% of the GPs surveyed already had an MHR.

While the TMR survey had its limitations, including the small sample size and negative framing of the questionnaire, the results did mirror those of a previous survey, and should be concerning for the Australian Digital Health Agency, the group responsible for rolling out the system.

A poll of 124 attendees at the GPs Down Under conference in the Gold Coast in June revealed that 63% intended to opt out of the MHR."

Note the concern GPs have for their own privacy as well as that of patients. The consultation on secondary use of health data didn't even mention health worker privacy in their conclusions and report.