” My Health Record moving to an opt-out model is the most important digital health change for consumers in Australia in 2018.
To help people make an informed and considered decision about whether or not to opt-out of having a record created for them CHF are holding a series of 6 webinars, starting this week, that will cover the key information people need to understand the benefits and risks of My Health Record in the context of their own lives.
These interactive webinars will include knowledgeable panellists and provide a chance for questions from the public to be asked of them through the webinar service’s Q&A and chat functions.”
Full details and registrations Part 1 Below
” The Federal Government’s Health Care Homes is forcing patients to have a My Health Record to receive chronic care management through the program, raising ethical questions and concerns about discrimination.
The government’s Health Care Homes trial provides coordinated care for those with chronic and complex diseases through more than 200 GP practices and Aboriginal Community Controlled Health Services nationally, and enrolment in the program requires patients to have a My Health Record or be willing to get one
See Part 2 below for debate ACCHO Chronic care patients forced to have My Health Records to access government’s Health Care Homes program
” NACCHO endorses and supports the My Health Record system initiative provided patient information and privacy is protected. The patient is in control of what information is placed in their electronic record and who else has access to it.
But want an assurance from the Health Minister that all patient records will be protected and if that requires further legislation then so be it.’
Mr John Singer, Chairperson of the National Aboriginal Community Controlled Health Organisation (NACCHO)
Before each webinar, we are also surveying and collating questions on each week’s topic through our website and on Twitter.
Over the coming weeks, the webinars will cover privacy and security, and overview of digital health in Australia, the benefits and risks, digital inclusion and health literacy.
You can find out more about the entire series here: https://chf.org.au/introduction-my-health-record-webinar-series
Details for Webinar 1: Privacy and Security of My Health Record
The first webinar is being held next Wednesday, 8 August at 12:30pm AEST and will focus on privacy and security.
Register here: http://www.webcasts.com.au/chf080818/
Questions and concerns on the topic can be submitted through the CHF website here: https://chf.org.au/introduction-my-health-record-webinar-series/webinar-1-privacy-and-security#questions
They can also be shared on Twitter using the hashtag #MyHealthPrivacy.
Your questions and concerns will be collated, edited and aggregated by CHF to put to the panellists at the webinar. It will also be possible to ask questions during the event.
- Kim Webber – General Manager, Strategy at the Australian Digital Health Agency
- Karen Carey – Consumer Advocate, former chair of CHF and Chair of the NHMRC Community and Consumer Advisory Group
- Dr Bruce Baer Arnold – Assistant Professor, Law at University of Canberra and Vice-chair of the Australian Privacy Foundation Board
- Dr Charlotte Hespe M.B.B.S. Hons (Syd) DCH (Lon) FRACGP, FAICD – GP, Glebe Family Medical Centre and RACGP Vice President
My Health Record is an important reform that will only work and evolve in the right way if clinicians and consumers understand, trust, value, use and discuss the system. We hope that you will join us for these webinars as we discuss and question the key issues and information about My Health Record.
Part 2 Chronic care patients forced to have My Health Records to access government’s Health Care Homes program
The Federal Government’s Health Care Homes is forcing patients to have a My Health Record to receive chronic care management through the program, raising ethical questions and concerns about discrimination.
The government’s Health Care Homes trial provides coordinated care for those with chronic and complex diseases through more than 200 GP practices and Aboriginal Community Controlled Health Services nationally, and enrolment in the program requires patients to have a My Health Record or be willing to get one.
But GP and former AMA president Dr Kerryn Phelps claimed the demand for patients to sign up to the national health database to access Health Care Homes support is unethical.
“I have massive ethical concerns about that, particularly given the concerns around privacy and security of My Health Record. It is discriminatory and it should be removed,” Phelps told Healthcare IT News Australia.
Under a two-year trial beginning in late 2017, up to 65,000 people are eligible to become Health Care Homes patients as part of a government-funded initiative to improve care for those with long-term conditions including diabetes, arthritis, and heart and lung diseases.
Patients in the program receive coordinated care from a team including their GP, specialists and allied health professionals and according to the Department of Health: “All Health Care Homes’ patients need to have a My Health Record. If you don’t have a My Health Record, your care team will sign you up.”
Phelps said as such patients who don’t want a My Health Record have been unable to access a health service they would otherwise be entitled to.
“When you speak to doctors who are in involved in the Heath Care Homes trial, their experience is that some patients are refusing to sign up because they don’t want a My Health Record. So it is a discriminatory requirement.”
[Read more: Greg Hunt announces legislative changes to tighten privacy and security protections for My Health Record | Opposition calls for My Health Record roll out to be suspended as AMA seeks greater privacy protections]
It has also raised concerns about possible future government efforts to compel Australians to have My Health Records.
“The general feedback I’m getting is that the Health Care Homes trial is very disappointing to say the least but, nonetheless, what this shows is that signing up to My Health Record could just be made a prerequisite to sign up for other things like Centrelink payments or workers compensation.”
Human rights lawyer and Digital Rights Watch board member Lizzie O’Shea claims patients should have a right to choose whether they are signed up to the government’s online medical record without it affecting their healthcare.
“It is deeply concerning to see health services force their patients to use what has clearly been shown to be a flawed and invasive system. My Health Record has had sustained criticism from privacy advocates, academics and health professionals, and questions still remain to be answered on the privacy and security of how individual’s data will be stored, accessed and protected,” O’Shea said.
Health Minister Greg Hunt this week announced legislative amendments to restrict access to individuals’ My Health Records by law enforcement and government agencies following a privacy backlash that had grown in momentum since the three month opt out period began on July 16.
Records of those who have chosen to opt out of the system will also now be deleted. Previously, data would remain in the system until 30 years after a person’s death, or when date of death was unknown for 130 years after the date of birth.
The three-month opt out period has also been extended to November 12.
About 6 million people currently have a My Health Record and remaining Australians will have a record created for them by the end of the year unless they opt out.
The Opposition’s Shadow Health Minister Catherine King claimed the government’s changes don’t go far enough.
“Minister Hunt’s response to this fiasco that has become the implementation of the My Health Record is entirely inadequate. We’ve had weeks where the minister has been out there saying there is nothing to see here, there is no problem, particularly no problem when it comes to the legislative provisions relating to court orders and access by law enforcement bodies. We now see that, again, that was entirely untrue,” King said.
“We don’t believe that anything less than a suspension of the opt-out of the My Health Record, whilst the government rebuilds community trust in the My Health Record, will be sufficient. This government has presided over a failure of implementation, and it comes with a litany of other failures. When it comes to the National Disability Insurance Scheme implementation, when it came to Census fail, when it comes to the roll out of the National Broadband Network.”
According to O’Shea, the Health Care Homes revelation raises further concerns about a system that has been mired in recent controversy. She said Indigenous people may be particularly wary of My Health Record, penalising some of the most vulnerable Australian patients.