This appeared from the RACGP late last week.
GP-run school clinic to close due to teens’ data privacy fears
Doug Hendrie 13/09/2018 3:41:32 PM
A ground-breaking Tasmanian school health clinic will close due to fears that sensitive data uploaded to My Health Record may be seen by parents.
GPs are concerned young people will not divulge sensitive information due to fear it could be seen in My Health Record.
GP Dr Robert Walker has run a student health clinic at Rosny High School, which has around 1000 students, in Hobart for 10 years. It is one of only two GP-run school health clinics in Tasmania.
But he will close the clinic on 15 November, the day all Australians who have not opted out of My Health Record will have a record made for them.
‘About 15% of our young patients have a [My Health Record], presumably enrolled by their parents and almost all without their knowledge,’ he wrote in a blog post.
‘These students are really distressed by having a [My Health Record] and now worry about their confidentiality.
‘If we do not tick a box on our path referrals to avoid results going onto their [My Health Record], parents and others can see the results of [STI] and HIV screens. If a pharmacist slips up and fails to block a dispensing activity, scripts for contraceptives and medications for [STIs] are also visible.’
Dr Walker will this week make a formal submission to the ongoing Senate committee inquiry into My Health Record, calling for urgent change.
In his submission, he will note that, ‘Simple tick-box errors on requests for pathology or imaging tests, poorly edited Shared Health Summaries prepared by other providers with unproven or irrelevant diagnoses or errors with pharmacy dispensing notifications may cause unintended or incorrect uploads of data into a student’s [My Health Record] – which other parties can view.’
‘As GPs, we insist that [My Health Record] be restructured and alternatives considered for teenagers,’ he will write to the inquiry, calling for a stop to the program for young people between 13 and 19.
Dr Walker told newsGP he is in a bind, as he and other GPs will be in trouble if they continued – and students will be in trouble if they did not.
‘What we don’t want is to have students fearing going to us or other doctors for service. When they see a doctor sitting there with a computer, they’ll be thinking, “Where is this data going?”’ he said.
‘[At present], we tell kids that whatever they tell us, it won’t get back to mum, dad, the police or a boyfriend. And they say, “Whew, that’s great”.
‘Adolescents are much more sensitive to potential damage to their privacy than adults. If you’re 17 and applying for a job, you don’t want your anxiety known to people.’
Dr Walker estimates he and his colleagues from nearby Lindisfarne Clinic see around 50 students a week, with consultations split evenly between mental health, sexual health and injury.
He said there are many ways sensitive information – the results of an STI test, a prescription for contraception, or notes on a mental health condition – could be uploaded to a mature minor’s My Health Record and seen by parents or guardians.
‘You might prescribe a contraceptive and the teenager’s older sister might go get it. The pharmacist wouldn’t realise it was a mature minor and would upload a Shared Health Summary, and the data’s up there,’ he said.
Dr Walker gave the example of a former patient who wanted a pregnancy test.
‘In great fear, she said, “If my father finds out about this, he will beat me”. So that’s the fear we have,’ he said. ‘Unless we can guarantee confidentiality – and I can’t, after 15 November – why do it?’
‘The last thing we want to have happen is have a kid suffer injury. They might tell us about same-sex attraction, about an experience with an older boy, they might want an HIV screen. Let’s say that pings up on their record and they’ve got a highly religious family – they might end up homeless.’
Dr Walker said that to continue his twice-weekly bulk-billed drop-in clinic, he and his colleagues would have to spend an ‘inordinate’ amount of time making sure students understood the potential risks of having data uploaded to My Health Record.
‘The extra work to minimise harm will make our clinics unworkable. Just telling teenagers to alter the settings on their [My Health Record] is not enough,’ he will write in his submission.
‘[T]eenagers may avoid consulting their doctors or psychologists via Medicare. This loss of faith will be a disaster and will destroy the long accepted recognition by young people that doctors ensure confidentiality.’
The news comes after Dr Nathan Pinskier, Chair of the RACGP Expert Committee – eHealth, this week told the Senate committee inquiry that the issue of parents of mature minors seeing sensitive data represents a growing concern.
Dr Pinskier called for a halt to any automatic uploading of data for young people between 14 and 18 unless they directly opened their own My Health Record. He also called for access to be denied automatically to authorised representatives once a minor turns 14, without the need for them to take control of their own record.
Dr Pinskier told newsGP the issue had been raised repeatedly by worried GPs at My Health Record education sessions run by the RACGP.
At present, a teenager’s authorised representative has default access to their My Health Record until they turn 18, unless they take control earlier.
Dr Pinskier said it is unrealistic to expect teenagers to be able to verify their identity and gain access to the documents – such as evidence of address, bank account details and Medicare details – required to take control of their own record.
While Medicare and Pharmaceutical Benefits Scheme (PBS) information is not visible in a teenager’s My Health Record, the RACGP will express its concern that pathology reports, medicine information and other summary documents may disclose sensitive health information the teen may not wish to share.
But he will close the clinic on 15 November, the day all Australians who have not opted out of My Health Record will have a record made for them.
‘About 15% of our young patients have a [My Health Record], presumably enrolled by their parents and almost all without their knowledge,’ he wrote in a blog post.
‘These students are really distressed by having a [My Health Record] and now worry about their confidentiality.
‘If we do not tick a box on our path referrals to avoid results going onto their [My Health Record], parents and others can see the results of [STI] and HIV screens. If a pharmacist slips up and fails to block a dispensing activity, scripts for contraceptives and medications for [STIs] are also visible.’
Dr Walker will this week make a formal submission to the ongoing Senate committee inquiry into My Health Record, calling for urgent change.
In his submission, he will note that, ‘Simple tick-box errors on requests for pathology or imaging tests, poorly edited Shared Health Summaries prepared by other providers with unproven or irrelevant diagnoses or errors with pharmacy dispensing notifications may cause unintended or incorrect uploads of data into a student’s [My Health Record] – which other parties can view.’
‘As GPs, we insist that [My Health Record] be restructured and alternatives considered for teenagers,’ he will write to the inquiry, calling for a stop to the program for young people between 13 and 19.
Dr Walker told newsGP he is in a bind, as he and other GPs will be in trouble if they continued – and students will be in trouble if they did not.
‘What we don’t want is to have students fearing going to us or other doctors for service. When they see a doctor sitting there with a computer, they’ll be thinking, “Where is this data going?”’ he said.
‘[At present], we tell kids that whatever they tell us, it won’t get back to mum, dad, the police or a boyfriend. And they say, “Whew, that’s great”.
‘Adolescents are much more sensitive to potential damage to their privacy than adults. If you’re 17 and applying for a job, you don’t want your anxiety known to people.’
Dr Walker estimates he and his colleagues from nearby Lindisfarne Clinic see around 50 students a week, with consultations split evenly between mental health, sexual health and injury.
He said there are many ways sensitive information – the results of an STI test, a prescription for contraception, or notes on a mental health condition – could be uploaded to a mature minor’s My Health Record and seen by parents or guardians.
‘You might prescribe a contraceptive and the teenager’s older sister might go get it. The pharmacist wouldn’t realise it was a mature minor and would upload a Shared Health Summary, and the data’s up there,’ he said.
Dr Walker gave the example of a former patient who wanted a pregnancy test.
‘In great fear, she said, “If my father finds out about this, he will beat me”. So that’s the fear we have,’ he said. ‘Unless we can guarantee confidentiality – and I can’t, after 15 November – why do it?’
‘The last thing we want to have happen is have a kid suffer injury. They might tell us about same-sex attraction, about an experience with an older boy, they might want an HIV screen. Let’s say that pings up on their record and they’ve got a highly religious family – they might end up homeless.’
Dr Walker said that to continue his twice-weekly bulk-billed drop-in clinic, he and his colleagues would have to spend an ‘inordinate’ amount of time making sure students understood the potential risks of having data uploaded to My Health Record.
‘The extra work to minimise harm will make our clinics unworkable. Just telling teenagers to alter the settings on their [My Health Record] is not enough,’ he will write in his submission.
‘[T]eenagers may avoid consulting their doctors or psychologists via Medicare. This loss of faith will be a disaster and will destroy the long accepted recognition by young people that doctors ensure confidentiality.’
The news comes after Dr Nathan Pinskier, Chair of the RACGP Expert Committee – eHealth, this week told the Senate committee inquiry that the issue of parents of mature minors seeing sensitive data represents a growing concern.
Dr Pinskier called for a halt to any automatic uploading of data for young people between 14 and 18 unless they directly opened their own My Health Record. He also called for access to be denied automatically to authorised representatives once a minor turns 14, without the need for them to take control of their own record.
Dr Pinskier told newsGP the issue had been raised repeatedly by worried GPs at My Health Record education sessions run by the RACGP.
At present, a teenager’s authorised representative has default access to their My Health Record until they turn 18, unless they take control earlier.
Dr Pinskier said it is unrealistic to expect teenagers to be able to verify their identity and gain access to the documents – such as evidence of address, bank account details and Medicare details – required to take control of their own record.
While Medicare and Pharmaceutical Benefits Scheme (PBS) information is not visible in a teenager’s My Health Record, the RACGP will express its concern that pathology reports, medicine information and other summary documents may disclose sensitive health information the teen may not wish to share.
Here is the link:
There is more coverage here:
What we now have to do is see if these concerns actually lead to change – and how effective it will be.
Time will tell.
David.
