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Date and Time: 12:30pm AEST, 8 August 2018
- 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
The opt-out period for My Health Record began recently, prompting much greater scrutiny of the project by media and the public. Central to that scrutiny has been questions of privacy and security of the system.
In this webinar, we briefly cover My Health Record in general, then open a panel discussion that will focus on the privacy and security of the system, how legislation and policy affects it, and whether and what changes should be made to improve the privacy and security of My Health Record.
- Timestamped Q&A
- Key takeaways by Pip Brennan, Executive Director of the Health Consumers Council WA
- What’s happening with the legislation for My Health Record?
- An important overview of the pros, cons and questions about My Health Record
- How to set Privacy and Security Controls on your record - myhealthrecord.gov.au
Click the minutes and seconds to go to the part of the webinar where the question was asked.
4:30 - What information is in an MHR, and what is the timetable for any further development of that information on the MHR?
6:55 - Who will have access to that record?
7:10 - How will last week's measures announced by the government fit the protections around release of your data?
8:20 - Where can people find easy to understand instructions about how to access and control the data?
9:55 - Can researchers access MHR data for research purposes?
11:20 - What about access by insurance and other companies to the identified data?
12:38 - As a GP from your perspective, what are the sorts of issues when it comes to privacy and confidentiality that strike you when we're talking about MHR?
17:30 - What sort of issues do you think as a long time health consumer advocate we need to be thinking about in terms of privacy and security with MHR?
20:40 - Bruce, what are the privacy and security issues to keep an eye on?
25:03 - But don't you have to put the benefits of such a system of having comprehensive health records for easy access by both the consumer and the patient. How much is that worth?
26:35 - Karen on medication safety
29:10 - What do you think about this issue that in the end, as Karen says, it's for the consumer to balance their beliefs, their needs, from the health system to balance the risk?
32:30 - Charlotte, on a related issue, some of the medical profession have been critical of the fact that if patients have a choice of what goes on and off their record, this may in fact endanger clinicians treatment decisions down the track. What's your feeling about this?
38:15 - Discussion on hospital IT practices and balancing vulnerability with ease of use
43:15 - We've had one of the email messages that's come through who says, "I assume that the comments by the gentleman on privacy apply equally to all clinical records."
44:00 - For the 14 to 17-year-olds who can apparently take control of their records, what does one do about educating both them and their parents about this if it comes to this?
so have a question from James who asks, "What sort of billing information is included on the MHR and how secure is this information?
ou delete information, does your GP made aware of it? Automatically no?
51:20 - Bruce - We're ignoring the human factor, we need to think seriously about risk, about autonomy and about respect.
52:15 - Karen, can I ask you what factors should patients who have the diagnosis of a stigmatizing illness mental health, HIV/AID, what are the sorts of things they need to think of when it comes to My Health Record? What about genetic information?
54:45 - Kim, what's the status of the genetic genomic information issue in MHR?
55:40 - The road to hell is paved with good intentions. What we will see is creep.
Some people have suggested that say, "Women who live with chronic pain or have a history of anxiety should opt out as they risk their diagnosis being used as a reason to not investigate something further." How is the medical profession dealing with that sort of issue where anxiety on your record might mean the doctor would say, "Oh, I won't go down that track?"