This appeared during last week:
We can gain a lot by sharing our sensitive health data
Sam Crosby
Published: March 29, 2017 - 12:00AM
Published: March 29, 2017 - 12:00AM
Years back, I worked with a group of people who had contracted Hepatitis C. The experience of one woman stayed with me.
Julie looked every inch your average working mum. Hep C was a hangover of a past life she was desperate to escape.
But when she confided her positive status to a co-worker, word spread throughout her office.
She found herself shunned by one group of fearful colleagues, and pitied by another.
Julie's story stuck with me, because it was such a striking example of how sensitive medical data is. Its unauthorised release wrecked her work life.
It's this sensitivity that has meant the benefits of e-health have eluded our nation for a decade.
We know that fully digitising and unifying our personal medical data would dramatically improve our health and save billions each year. Yet our decision makers are jumpy about the potential consequences.
This reluctance contrasts sharply with the way in which we have bounded toward exposing our other private information.
Instead of the anonymity of cash we use electronic transfers that track our activity. Instead of relatively untraceable mail and phone calls, we allow servers in foreign countries to house our personal correspondence. Instead of keeping our thoughts to ourselves we publish them on Facebook, which quietly catalogues a complete history of our photos, our networks, our lives.
We could quite easily stop doing all of these things, because whenever you start collating data in the one place there is always at least some risk of a hack or theft. But we don't, because it would be a hassle. We trade off the security of our privacy for convenience.
But our health records feel different – they are the most sensitive, private information we have. Then again, the benefits on offer are so much greater than a mere convenience.
"Personalised medicine" would allow doctors and nurses to use a combination of patient history, behaviours, and genetic data to identify individualised treatments and drugs.
Our lives – and the lives of our children – could conceivably be saved through the swift transfer of pertinent information.
Better, freer data would also enable those who run the health system, including hospitals and the PBS, to better identify areas of low-quality care.
It is now 10 years, however, since the Rudd government launched its e-health initiative. It failed due to poor pick up and low stakeholder support.
The current government has looked to reboot efforts through its My Health Record program, but take-up is still poor and, like its predecessor, it faces a critical issue: doctors don't endorse it.
The Australian Medical Association's key objection is that under existing regulations patients can remove anything from their own records without even leaving a note about the omission. This renders any record dangerously unreliable.
Yet government has allowed this loophole, because it is so keen to ensure every potential privacy concern is catered to.
That's a shame. Because there is a lot of evidence that indicates if government moved more decisively, we might well be receptive.
…..
Sam Crosby is executive director of The McKell Institute.
The full article is found here:
This is really a pretty sad article.
First – on Julie’s story – it is outcomes and experiences like this that should and indeed do make people share health information very carefully. Once material like this is out it is very hard to get back!
Second I know of no evidence that overriding people’s privacy is likely to make them happier to have their privacy violated!
Third, where is the evidence that the government will be careful and secure with information, given what they did recently in leaking personal information for their own political purposes.
Fourth what is the evidence the information in the myHR is actually useful for the purposes Sam proposes.
All this enthusiasm comes from the analysis reported in this report:
The much more measured approach to the use of Data in a careful and transparent way almost certainly has merit but going at it like a ‘bull at a gate’ is not the way forward. Let’s build trust, public awareness and confidence first before proceeding!
Anyone who knows anything would not use the myHR as a base for the sort of datamining discussed other than in desperation!
See the most recent poll of the view of readers.
Please download the report and then comment if you have a moment! With the revelations from earlier on the way the myHR can leak private information, use of this information needs very careful thought - to say the least.
David.
David.
4 comments:
Very strange report. It says
"Stakeholders at the McKell Roundtable identified three public sector datasets they believed would improve healthcare and health outcomes should government agencies prioritise them for collection and sharing: (i) the My Health Record (electronic health records) (ii) public hospital performance data, and (iii) public sector
administrative health data."
The authors conflate My Health Record with electronic health records. Never once do they mention that MyHR is a summary system, that the real useful data is buried in other systems and the MyHR doesn't and can't contain real clinical point-of-care data.
No doubt this report will be used by ADHA in its analysis and justification for its strategy. Pity it's so wrong.
Is the real issue that the Health record system is a document store not a content store, the former not much good beyond an online filing cabinet duplicating what is elsewhere. I keep asking is this simply holding sharing information back?
Summary and aggregation/administration data sources do not equal a full clinical record. The data sources listed above cover only a fraction of the actual clinical data. While benefits can be drawn from having a complete collection of digital clinical records, the reality is further from ideal. Even when clinical data is recorded it can be incorrect considering the number of times I've been misdiagnosed. The benefits of EHR's are often speculative or based on selective cases which are then used to over generalise the benefits. Just because you have data in electronic records doesn't mean it's useful for analysis.
Unfortunately the government departments has a clear indifference towards citizens
One specific potential harm is coercion: where patients unwillingly give others access to their records from overt threats or force, or under the guise of helping a vulnerable relative. References to abuse or maltreatment in the medical record seen by household members may lead to escalation of the abuse, restrictions on access to healthcare for victims, or pressure or aggression directed at health staff in demands to change the record.
There is also the case of abused and neglected children, whose parents may have authorised access to their records. The 30% of women and 16% of men who experience domestic abuse in their lifetime and the 24% of children who experience abuse or neglect over childhood are at risk of further harm. Without the assurance of confidentiality, how can we expect patients to seek help from their GP for the full range of physical, emotional, sexual, and social problems that may affect them?
Equally important is the idea that the clinician, worried about coercion or information leakage within a household, may be inclined not to record anything deemed sensitive, such as early concerns about abuse or maltreatment.
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