I noticed this brochure a few days ago.
The Sydney Children’s Hospital Network
SECURITY OF YOUR CHILD’S INFORMATION
We follow strict government standards regarding the secure storage of your child’s health information in all formats.
We regularly enhance and audit our systems in order to protect your child’s information from unauthorised access, loss or other misuse.
NSW public health services hold health information in paper records, on local electronic medical record systems and the NSW HealtheNet.
HealtheNet is a secure state-wide electronic record used by the NSW public health service.
HealtheNet contains a summary of your child’s health information, for example, your child’s discharge summaries, pathology and diagnostic test results and medication information.
If your child attends a public health service anywhere in NSW, in most cases this summary information will be available to your child’s treating clinical staff via HealtheNet.
MY HEALTH RECORD
My Health Record is Australia’s national digital health record system. All Australians have a My Health Record, unless you choose not to have one.
If your child has attended a NSW public health service, a summary of their health information will be sent to your child’s My Health Record. NSW public health staff may also view, and send information to, your child’s My Health Record.
If your child has a My Health Record, but you do not wish for your child’s information from a particular doctor’s appointment or hospital visit to be included in their My Health Record, you must inform the health provider at the beginning of your child’s visit. For further information about My Health Record, telephone 1800 723 471, or visit myhealthrecord.gov.au.
CHILDREN ACCESSING THEIR OWN RECORDS
Young people are able to make decisions about their health if medical staff think they are mature enough to fully understand their health problems and the treatment options. There is no fixed age for this, but it is usually about 14 years of age.
In most circumstances, medical staff will encourage young people to involve their parent or carer. Children aged 16 years and over have the right to ask for their information independently.
Here is the link:
https://www.schn.health.nsw.gov.au/files/attachments/net6645_schn_privacy_leaflet_fa_v2.pdf
A search finds this basic description of what HealtheNet is and what is does. Dated Sep 2019.
What is HealtheNet?
HealtheNet is a NSW Health state-wide information-sharing platform, accessed via the hospital’s electronic Medical Record(eMR). It connects multiple systems allowing NSW Health clinicians with secure and immediate access to a patient’s medical information from across all NSW Local Health Districts.
HealtheNet also shares patient information with General Practitioners (GPs)via secure messaging and sends and retrieves key clinical information to the national My Health Record (MHR) system, if the patient has one; enabling patients and Primary Healthcare providers access to key clinical information.
What documents are sent directly to GPs?
Currently HealtheNet electronically sends discharge summaries to a patient’s nominated GP (via secure messaging). GP practices receive discharge summaries when:
1.Patient’s nominated GP details is stored in eMR
2.A hospital clinician electronically signs the discharge summary;and
3.The patient is discharged.
What clinical information does NSW Health share to a consumer’s MHR?
HealtheNet sends and retrieves patient related clinical information with the MHRsystem.
Currently, NSW is sharing the following clinical document types to MHR:
1.Discharge summaries
2.NSW Health pathology results*
3.Diagnostic imaging reports
4.Dispense medication records at discharge
NSW Health is currently uploading information from Inpatient and Emergency encounters. Work is underway to include information from Outpatient encounters.*
All NSW Health Pathology networks are planned to be contributing to HealtheNet and MHR by late2019.
Note: GPs will still receive pathology reports from NSW Health Pathology laboratories through their existing channels.
Here is the link:
It is interesting what information is not sent on to the #myHealthRecord.
---- Begin extract
What information does NSW Health NOT share with a patient’s MHR?
▪ Pathology test results identified as sensitive (at NSW state level) are not sent to the patient’s MHR. These include: (i) HIV tests and HIV Drug Assays (ii) Sexually Transmitted Infections (STIs) tests (iii) Genomics tests (iv) Pregnancy related tests in minors(under 16yrs)(v) Drug and Alcohol tests (vi) ABO typing paternity group, (vii) MCS tests (genital), and (vii) Autopsy tests.
▪ Pathology tests ordered by GPs and processed by NSW Health Pathology are not displayed in HealtheNet Clinical Portal nor uploaded to the patient’s MHR
▪ Pathology results and imaging reports from public hospitals that use a private pathology/imaging lab may not be sent to the patient’s MHR.
▪ Dispensed medication at discharge that are classified as sensitive drugs are not shared with MHR, these include but not limited to HIV medications.
IMPORTANT: Patients have the right to request that information not be sent to their MHR and NSW Health is obliged to comply with this request. In NSW Health a request not to send information to a MHR will apply to all clinical information created for that hospital encounter.
Note: Pathology test results and diagnostic imaging reports shared with the MHR system are accessible to healthcare providers immediately however they cannot be viewed by the patient for seven days.
----- End extract
How decent of them!
So it seems we have a mini, duplicate and partial #myHealthRecord being created in NSW totally under the radar (for me at least) if not for most of the public!
I wonder what steps have been taken to obtain any form of consent for passing this information to the federal system and making the information accessible all over NSW.
It seems that if the bureaucrats get hold of any of your health information they are overwhelmed by a desire to send it off far and wide – without actually asking you – but seemingly assuming you will be perfectly happy for that to happen.
It seems eHealthNSW noticed the opt-in / out debate and decided to fly under the radar!
What other States are up to this sort of covert program I wonder? Queensland perhaps.
David.
This initiative started life in December 2018 as the Child Digital Health Record
ReplyDeleteChildren’s health goes digital
https://www.digitalhealth.gov.au/about-the-agency/digital-health-space/children-s-health-goes-digital
"20 December 2018: The Agency has partnered with eHealth NSW and the Sydney Children’s Hospitals Network to enhance children's care and empower families through digital health technologies.
A child’s health and development information is currently captured in a range of unconnected paper and digital systems, meaning key details are not always available when and where they are needed.
To address this, the Agency has partnered with eHealth NSW and the Sydney Children’s Hospitals Network to establish the National Children’s Digital Health Collaborative. The Collaborative is designing, building, and evaluating three proof of concept national initiatives including a child digital health record and a digital pregnancy health record."
According to this (Dated March 2020) they've got as far as a proof of concept which they will be trialling in the middle of 2020.
https://www.digitalhealth.gov.au/news-and-events/news/national-digital-health-strategy-march-updates
It seems they will be delivering a "Next generation scalable interoperability platform"
There's more information here:
https://conversation.digitalhealth.gov.au/childrens-collaborative
It seems to be yet another Australian Digital Health Initiative.
I am sure that it all true - but this seems to be more advanced and to have been under development for quite a while.
ReplyDeleteBut, whatever is happening, we are creating yet another duplicate set of data from the source information it seems.
This seems to be potentially very messy etc.
Consent is not clear to me either.
David.
Does Dr Zoran Bolevichnot sit as an active member of the ADHA board? Why all these competing undertakings? Or has he no control over eHealth NSW?
ReplyDeleteCan't speak to the consent issue but HealtheNet is a much richer and real time record than MHR, and AFAIK has been in operation for many years (at least < 2014) whilst MHR was (and arguably still is) a nebulous concept. I'd assume each state Health Dept has built a similar capability over the years as health is a state issue and many systems hospital/area based, so was a clinical imperative.
ReplyDeleteIt's not exactly been kept secret either.
https://www.ehealth.nsw.gov.au/programs/clinical/healthenet
If the need for or existence of HealtheNet comes as a surprise to AHIT then that's on AHIT, and doesn't reflect well.
What / who is AHIT?
ReplyDeleteWhatever is going on it sure looks like an uncoordinated, fragmented mess with nobody making sure everything will work together to support the patient.
ReplyDeleteThe AHDA is concentrated on My Health Record, which needs the active cooperation and participation by each patient to ensure that "their" health record is accurate and complete.
Fat chance.
Like someone pointed out yesterday, a certain COO and her team have clearly dropped many balls, all related to ensuring coordination to prepare for interoperability, secure messaging, common clinical models and terminology, safety the list goes on. Seems the more harm you do the more reward you get
ReplyDeleteOrganizing data is something that can be useful if you have good data and you don't destroy it in the process. The data is the Model and the system is the View in the MVC pattern. The focus should be on high quality standards compliant data with as much atomic data as possible and preservation of the data in its original form. Then you can create any number of views of the data which can be customized to GPs/Specialists/Patients etc
ReplyDeleteMHR destroys the original data by turning it into pdf and its a very dumb view of the data and shreds the data in the process meaning its a total dead end and is customized to no one, so no one is happy. National programs should be focused on high quality compliant data and then try and build views from a solid base, or let others build the view they want. We have one size fits no one. FHIR or HL7V2 is not the issue, its quality data in its original form (Which is mostly HL7V2 currently) that is critical. A view can dumb it down as much as it likes as long as the original data is not lost.