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The final webinar of the series was an opportunity to summarise what has been covered, and put any remaining questions people had about My Health Record directly to representatives of the Federal Government.
In this webinar, a panel of health consumer advocates asked questions of a panel of representatives from the Federal Government, in a style similar to Senate Estimates. The consumer panellists also shared their thoughts and experiences with My Health Record.
Date and Time: 2pm-3:30pm AEDT, 17 October 2018
Representatives from Government:
- Karen Gallagher, ADHA, General Manager – Implementation, My Health Record
- Kim Webber - General Manager, Strategy at the Australian Digital Health Agency
- Michael Frost, AIHW - Group Head, Primary Health Care and Veterans Group
- Paige Burton - Consumer, 2017 Australian Youth Representative to the United Nations
- Sharon Tonkin - Consumer and carer with 40+ years of rural health experience
- Marc Niemes - Consumer, Digital and eLearning business founder, "Health is not something done to you, it is something you take part in"
The person who asked the question is named in brackets.
3:08 - (Jo) We might start off by asking each of the consumers can you take a couple of minutes to
tell us what your current attitude towards My Health Record?
3:32 – Marc
5:24 – Sharon
7:50 – Paige
10:03 – (Jo) Government reps, did you want to respond at all to anything that's said or can you outline what the role of the agency is in My Health Record?
10:24 – Kim
11:21 – Karen
13:17 – Michael
14:55 - (Jo) What would you say to people who are saying that a lot of the marketing, a lot of the emphasis has been on health professionals rather than the consumers who it's supposed to help?
18:15 – (Marc) Is MHR data being used to do more to move healthcare into basically preventative healthcare?
20:25 – (Sharon) How do we ensure that an e-conversation doesn’t just happen between medicos, leaving the consumer out?
22:43 – (Marc) What level of security do we have as consumers the data has been taken care of, and if that does get out in some way, what can we do?
27:14 – (Marc) Can the SMS notifications about access go to the designated carer?
28:06 – (Paige) Why send that text message after someone accessed the record and not before?
31:00 – (Paige) There's no, as I'm aware, incentive for GPs, medical practitioners, to take extensive notes, and that the system relies on that. How are we going to make sure that people are taking notes in a way that is clear, that allows for nuance, and when someone else looks at that record they can say, "Actually, I know what was happening here"?
34:17 – (Marc) Does the GP see it as an admin layer, or an actual benefit?
35:50 – (Sharon) Until 12 months ago, we had five GP practices in five towns. There was two IT systems, that didn't talk to one another. We're holding our breath, "Will they talk to My Health Record?"
37:10 – (Marc) Why not just use a digital wallet to hold the record, or a token, or something of that nature?
41:38 – (Jo) That was one of the questions that came through to us online. "How will people access their health record, if they're unable to access through myGov?"
44:23 -(Jo) On secondary use of data, Michael, can you tell us about who can access data and for what purposes? 47:46 – (Jo) So what checks and balances are there? Somebody says how they’re going to use the use the de-identified data. Then they use it for a different purpose. What happens then?
48:32 – (Jo) What's the process for de-identifying data?
50:09 – (Marc) Is it too simplistic to say if you are receiving the public benefit of a medical service, then you should, by rights, because you're in the health system, be willing to basically give them your de-identified data, anyway?
55:49 – (Paige) I think it's pretty flippant the way we're talking about, "Oh, people haven't been educated about it," or whatever. It's not an abstract thought, when we think about this data going to people. It does happen; it has happened.
1:00:49 – (Sharon) I was wondering how we're going to protect the concept of informed consent?
1:04:23 – (Sharon) How are we going to teach the population how to use it?
1:08:40 – (Paige) What kind of assurances are there for the privacy of young teenagers, and what happens when someone turns 18?
1:14:00 – (Paige) Are there instances where people will have to have a record to access certain kinds of health care or trials?
1:16:38 - (Jo) A question from Rosemary; "My GP's not currently set up for MHR, and he's reluctant to get involved, what rights do I have as a consumer? How can I insist?"
1:18:30 – (Jo) What are you doing with specialists to get them on board?
1:21:15 – Closing remarks from consumer panellists
1:25:00 – Closing remarks from government panellists