If This Is Accurate – And It Seems To Be - Victoria Health Seems To Be Off On An IT Frolic!

 This appeared earlier today.

Planned database of Victorians' health information 'trashes privacy'

By Henrietta Cook

December 5, 2020 — 11.30pm

The private medical information of every Victorian who has used public hospitals and health services will be collected by the Health Department, stored on a database and accessed by clinicians under a controversial state government plan.

The proposal, which was quietly unveiled in September, has attracted criticism from legal, consumer and public health groups because patients can’t opt out.

The Department of Health and Human Services has also flagged expanding the initiative — known as the clinical information sharing or CIS solution — to include patient details from private hospitals, GPs, mental health systems and ambulance services.

Danny Vadasz, chief executive of the Health Issues Centre consumer advocacy group, said it was worrying that patients were unable to consent to the collection of their data.

“It goes against everything the health system has been working towards over the past 10 years,” he said.

“The health system keeps talking about a patient-centred system and how consumers should be part of the decision-making process. How can you possibly argue that, and then just trash rights to privacy, data security and confidentiality without even consulting the constituents who are going to be affected?”

The initiative was a recommendation of an independent report commissioned by the government in 2015 following a series of potentially preventable baby deaths at the Djerriwarrh Health Services' Bacchus Marsh Hospital.

It's understood that changes to the state's privacy laws, which will enable the database to go ahead, will be drafted next year.

The proposed changes would give the department authority to electronically share patients' current and historical health information across public hospitals and health services.

The state government believes the database will complement and support My Health Record – the troubled national system for sharing health information between hospitals, GPs and pharmacies.

Following public outcry, My Health Record moved to an opt-out system in 2018, with about 2.5 million people withdrawing from the service.

The Health Issues Centre ran consultations with about 150 consumers and while many believed the state database had worthy intentions, they were concerned about the lack of opt-out provisions.

Mr Vadasz said consumers felt uneasy about sensitive information, such as a diagnosis following a stint at a public hospital’s mental health unit, being uploaded onto the database. This could lead to discrimination when they next accessed a public hospital, he said.

Similar concerns were aired about information collected from sexual assault clinics linked to public hospitals, and the diagnosis of communicable diseases such as HIV.

“Why is that relevant? Why do I have to have that information publicly available to DHHS bureaucrats and clinicians when it has nothing to do with the condition I am being treated for?” Mr Vadasz said.

Law Institute of Victoria health law committee member Bill O’Shea said the risk of privacy breaches would be heightened once information restricted to individual health services became accessible to all public health services. He said these services employed more than 160,000 practitioners.

“A lot of people have sensitive information that they don't want disclosed to a broader audience,” he said. “You should be able to opt out.”

While hospitals can already share information about patients without their consent for treatment, there is no central database. Clinicians rely on patients and their families to disclose which health services have their data.

A DHHS spokeswoman said the system would give public hospitals and health services a more complete picture of a patient’s history.

“It reduces the risk of missing important medicines information and allergies, and lets doctors and nurses see important medical images and laboratory results, to more safely manage the patient,” she explained.

She said the initiative was still in its planning stage and the department was seeking feedback on different options.

The Victorian Healthcare Association, the peak body for the state's public hospitals and community health services, said the voice of consumers was absent from the database's design.

“A one-size-fits-all approach to clinical information sharing will fail to address the nuance required to safeguard consumers’ rights to privacy and confidentiality and in some cases, their personal safety,” it wrote in a submission to the department.

The association’s chief executive, Tom Symondson, said while he supported the secure sharing of health information, it was vital that hospitals could withhold sensitive information, with patient consent, about family violence, custody, child protection, elder abuse, complex mental health conditions, paediatric health and abortion.

More here:

https://www.smh.com.au/national/victoria/planned-database-of-victorians-health-information-trashes-privacy-20201204-p56kpc.html

Here is the official word on the initiative:

Clinical information sharing

Key messages

• The Clinical Information Sharing Platform is a critical enabler to improving patient safety
• The Clinical Information Sharing will be deployed across an initial 3 public health services with a view to expand
• Clinical Information Sharing will enable effective and efficient clinical handover and continuity of care between health services

Victoria’s Digitising Health strategy, based on recommendations within the Targeting Zero report, identifies the need for investment in digital health information and related technologies to facilitate the delivery of person-centred healthcare. The focus will be on the acute health sector (i.e. Public Hospitals), to target safety and quality areas of most immediate risk to patients. 

Three digital health critical enablers have been identified to deliver these improvements: 

1. further rollout of electronic medical records to Victorian public health services
2. a unique patient identification capability across the Victorian health sector
3. a clinical information sharing platform across Victorian health services

Improved patient identification and the linking of patient records across health services is a prerequisite to the implementation of CIS platform. 

Digital patient identification, electronic capture and sharing of clinical information are critical for enabling management and use of health information for the provision of care and service improvement.

Overview

The department is working with Victorian health services and their clinical experts to determine requirements to deliver CIS capability across the Victorian public health sector. This program of work includes deployment to three health services.  Following this, the CIS capability will be extended to support statewide deployment, as funding allows.

At present, Victorian patients may have multiple unlinked health records spread across multiple health services, resulting in fragmented, rather than person-centred healthcare. 

CIS will enable effective and efficient clinical handover and continuity of care between health services. Handover and transitions in care are high-risk steps in the patient care journey. The need for a CIS solution is highlighted in emergency situations, where a patient’s medical history is unknown but immediate clinical decisions are necessary.  

• The CIS platform is a Victorian technology solution that will share public hospital data and make it available to healthcare providers (medical practitioners) within health services for the purposes of providing patient care.
• CIS will support clinical workflows and will contain ‘continuity of care’ clinical information for all patients that attend a public health service in Victoria.
• The CIS will facilitate access to the summary information in a patient’s My Health Record (MHR); this includes information across the broader health ecosystem (Victorian and national) e.g. general practices, private diagnostics, specialists and clinical information from other states and territories. 
• The combination of access to local health data provided by the CIS and a summary of a patient’s medical history from outside Victoria via the MHR will enable healthcare providers to have a more complete record of their patient’s medical history.

Timelines

The CIS project is a three-year initiative. The project is currently in phase one.

Downloads

• Clinical information sharing (docx, 51 KB)

https://www2.health.vic.gov.au/hospitals-and-health-services/quality-safety-service/digital-health/digital-health-initiatives/clinical-information-sharing

Here is the factsheet referenced above:

Clinical Information Sharing.

Overview

Clinical Information Sharing (CIS) allows sharing of core clinical information across public health services, making it available to healthcare providers within health services when providing patient care.

The implementation of clinical information sharing solution will enable more effective and efficient clinical handover and continuity of care between health services. Handover and transitions in care are high-risk steps in the patient care journey. The need for a clinical information sharing solution is highlighted in emergency situations, where a patient’s medical history is unknown but immediate clinical decisions are necessary.

CIS will allow sharing of core clinical information from public hospital data, making it available to healthcare providers within health services for the purposes of providing patient care.  It will also facilitate access to summary information in a patient’s My Health Record. 

CIS will support the secured sharing by clinicians of a patient’s demographic data including details of a person to contact in an emergency and also for medications, allergies and adverse reactions, discharge summaries, recent results of pathology and diagnostics imaging tests, recorded clinical observations such as height, weight, blood pressure and Advance Care Directives, advance care plans and resuscitation plans.

Benefits across the health sector

•      Improved patient safety and decreased avoidable harm

•      Improved client service integration, care handover and person-centred care 

•      Better clinical outcomes through improved data quality

Patient information is protected

The department takes the protection of patient information seriously. The CIS has been designed to ensure the highest standards for privacy and security of patient information. Detailed legal, privacy and quality assessments will be undertaken by independent experts to confirm the CIS solution meets all the legal, privacy and quality requirements.

----- End Factsheet

To me this is just astonishing and seems to be a bit like to ADHA effort to make the #myHealthRecord the central system in making the CIS the central Victorian system for accessing clinical information across the Vic. Public Health System.

It seems like a huge ‘boiling the ocean’ exercise and I am glad is it still at a phase (Initiation) where sense can prevail.

The idea of aggregating locally held clinical data from the private and public sector with the variably complete and timely data held in the #myHR is surely both overly complex and a uniquely difficult data management task – even if the private sector data was accessible.

Of course, privacy, consent and data sensitivity issues seem not to even warrant a real mention and the claimed benefits are all pretty nebulous and unproven.

This needs to be stopped and quickly would be my view, and I suspect that is what they will be told if real experts are involved as suggested (excluding the risk of judgement being distorted by consultation fees!) To me it really feels like a decade long unachievable fantasy!

What do you make of it?

David.