OK good folk of the forum, what do you think?As people with a complex health issue, with multiple specialists, this is something that directly impacts us, and could benefit us greatly (memory issues anyone?!).However there's privacy issues (any government department can access it without your knowledge), identity theft, insurance denial, employment issues etc.I just asked my GP about it today and she is officially undecided. She said get back to me on that one, the practice is having a meeting about it tomorrow!To opt out or not, that is the question. Would love to hear your thoughts.

I've opted out on principle. There have been so many IT stuff-ups in this country (let's start with the census). Apart from that, even the federal health minister doesn't know how it's going to operate. Yes, (contrary to his beliefs) the police can demand access to it without a warrant, it seems. Is it accessible if you're overseas? They don't know yet. So many unanswered questions. At my age, I care little who knows what about my health history; but for young people, it could be used against them for employment reasons, if it's not secure.

Prof Kerryn Phelps was talking about this on Radio National this morning and has had a bit to say about the legislation on Twitter.Prof Kerryn Phelps AM‏ @drkerrynphelps 11m11 minutes ago More Copy link to TweetEmbed TweetProf Kerryn Phelps AM Retweeted Louise SmithThe opt-out period is the next three months. You can wait to see what the Minister @GregHuntMP decides next week. If you are not happy with the privacy settings on this legislation, you can opt out, knowing you can opt in at any time in the future.As a previous president of the AMA, and a fairly sensible woman, I think she has a fair idea what she is talking about. Her concerns were mainly the amount of agencies who could request personal and currently private information, such as GP notes, without a warrant or court order by contacting the regulator, currently the Australian Digital Health Agency, and putting forward a 'reasonable' argument. The decision to release the information would then be made, without the patients consent, by a public servant. That's uncomfortable enough, but if the Agency was ever privatised (never say never about that) it's possible those decisions would be made by a corporate entity. That's really uncomfortable. The model has changed considerably since the idea was conceived in 2012--back then it was to be controlled by the patient. It seems we cant be trusted with that. Ironic, no?Her feeling is that GPs may stage a revolt and refuse to upload information that they consider sensitive unless the privacy concerns are addressed which could put them at risk of professional sanctions. She's also worried about the push by the health insurance companies to have access. That huge amount of data, the health records of potentially 25 million people, is a very valuable piece of kit. Money being the root of all evil (or route if you feel like being literal) nothing should be taken for granted. I think the legislation would have to be tightened considerably for me to be comfortable with it. The cynic in me is also concerned about changes in legislation as time passes which may not be in the individuals best interests.This story will go on for a while, but the more I'm hearing, the less I like it. There is still more than enough time to make a decision and, as Prof Phelps points out, you can always opt in later.

Everyone is 'in' unless you 'opt out'. As I understand it - your GP can't make the decision on your behalf.Personally, I don't trust the Govt as being smarter than the hackers.You should be able go online & use your centrelink/whatever log in to change that.

I'll probably not opt out but I might if I were younger, if half the world hadn't already got access to my medical records or (sorry, not my intention to alarm) if I had mental health issues. I don't care if employers have access to my physical health records, given the unsolicited approaches I get my details would appear to be well and truly circulated. But while it might helpmedical practitioners to share information about my mental and emotional state, I would be concerned about any leakage elsewhere. That sort of info wouldn't be on offer until this scheme is well established and some evaluation available.

I like the idea of everything being held centrally but for me too many unknowns about who will have access so I opted out at the weekend.

My Health Record | BCNA Online Network

54 Replies

kmakm
Member
7 years ago
My current thinking is that I will opt out my children. They have no complex ongoing health issues, and being digital natives I am confident that they will make up their own minds as young adults with all the information that will be available to them at that time.

I'm just not sure about myself.
Zoffiel
Member
7 years ago
I've been listening to Tony Bartone, president of the AMA, defending it at the National Press Club. Not very convincing, I'm afraid. He went down the rabbit hole for me when it became all about how inconvenient it was for doctors to go to nursing homes (which are getting further and further out in suburbia) and not be able to access records or use their system and then having to go back to their offices and write up notes and fax scripts and waste their valuable time, etc etc....you get the picture.
He has a point but it did nothing to sell the idea to me as the focus was on the wrong end of the equation--patients concerns come last, it seems. Again. The journos gave him a grilling about why he felt it was his position to defend the system, particularly in light of current concerns about security. Those who say that all the information is available to those who know how to find it are also missing the point. The thing that worries me is third parties being given pretty much unlimited licence--the suppliers of the aps for internet access, for example--to mine the data and how poorly that seems to have been thought out.
I've been a walking health record for years, the bloody folder comes to all my appointments. It would be very convenient to be able to leave it at home and to trust that if I get hit by the proverbial bus, someone will be able to sort it all out. I'm holding off for the moment and have set a diary date with myself closer to the cut off time to make a decision. I'll probably not opt out, but it is frustrating to see the amount of sensationalism surrounding the whole debate. What is the fake news? Some if obviously is.
Sister
Member
7 years ago
Still considering the pros and cons. For the kids as well as for me. I'm not sure, as far as I'm concerned, what anyone would have to gain from hacking my records unless it was to change anything with malicious mischief in mind.
AllyJay
Member
7 years ago
For me, I have some reservations, but mainly for other, particularly younger people. I personally don't give a toss if any government sticky beak looks at my info....I feel I have nothing to hide from them or anybody else. I'm highly unlikely to work again in the future, and don't need any insurance. If someone wants to steal my identity, they won't gain much from me. I have a bunch of very complicated medical issues, and so if I collapse in a shopping centre whilst alone, or are hit by a bus, at least all my medical crap is in one place and is accessible. If I was to wear a Medic Alert bracelet large enough to have all the details on it, it would be the size of a dustbin lid!!!

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