Thursday, November 01, 2018

Senate Estimates Last Week On The myHR Was Not All Smooth Sailing. Full Transcript Included.

This report of the goings on appeared last week:

Morrison government under pressure to rewrite My Health Record legislation

By Dana McCauley
24 October 2018 — 6:02pm
The federal government has come under increased pressure to suspend the rollout of its controversial My Health Record system and is considering rewriting its legislation, after a Senate inquiry highlighted major privacy failings and as the number of Australians to opt out exceeds 1.1 million.
Nationals senator Nigel Scullion revealed in Senate estimates on Wednesday that the government is considering further amendments to its legislation to address lingering privacy concerns raised by respected medical and privacy experts.
Added to the government's worries is independent Kerryn Phelps, the former Australia Medical Association president on track to be confirmed as the winner of Saturday's Wentworth byelection, who vowed to use her position on the crossbench to pressure a minority Morrison government on the issue.
Dr Phelps, a strident critic of My Health Record, told Fairfax Media she would be in Canberra on Thursday to meet with crossbenchers and seek their support for a suspension of the e-health system's rollout and the establishment of a new inquiry to ensure that it is bullet proof.
"I'll  also ask to speak to the Minister and shadow minister to talk about where there's room for compromise on this," she said.
Dr Phelps said the secondary use or sale of patient data remained unresolved despite the government having announced changes to prevent law enforcement from accessing medical records without a court order and ensure that records could be permanently deleted upon request.
"The more you dig into the creation and use of these databases and the potential for misuse, the more concerning it becomes," she said.
Mr Hunt would not confirm plans to further amend the legislation when contacted by Fairfax Media, but Senator Scullion said it was his understanding that the government was looking at doing so.
"My understanding is that there'll be consideration of not only the report of this committee, [but also] of improving the privacy elements of that," Senator Scullion told the community affairs legislation committee on Wednesday.
"There's been a lot of input from stakeholders, from the Privacy Commissioner to the president of the AMA.
"I would think that the government, and someone can yell at me, but my understanding is that the government will be considering amendments to the legislation that take into consideration some of those matters."
Senator Scullion also revealed that more than 1.1 million people had now opted out, up from 900,000 on September 12.
He defended the government's refusal to extend the opt-out period by a year beyond the November 15 deadline, as pledged by Labor and recommended by the Senate inquiry report, saying the government needed to push ahead so the benefits of the e-health system could be rolled out to the wider population.
"It's important to note that people can opt out the very next day ... Anyone can close their My Health Record at any time."
More here:
I have to say with the outcome in Wentworth now pretty clear I wonder just how firm the Government is going to remain on its plans.
Here is the relevant transcript for browsing:

Senate Estimates  - October 24,  2018 - ADHA Related Transcript.

Here is the link to the whole file.
Here is the myHR material (see .pdf for cast details from the Department):
At about 2:30pm
Senator GRIFF: Thank you. Chair, I have some My Health Record questions next. Do you wish to stay where we are?
CHAIR: That is all right, we will come to Senator Di Natale.
Senator DI NATALE: I also have My Health Record questions.
CHAIR: Okay, so we will go to Senator Watt.
Senator WATT: We also have some My Health Record questions. I think we all have My Health Record questions, but Senator Di Natale might have other questions in this outcome as well.
Senator DI NATALE: No, I don't.
----- Distraction on another issue.
Senator WATT: It sounds like all of our remaining questions relate to the My Health Record. Mr Kelsey, I suspect most of these questions will come to you. The last we heard—I think this was at the Senate inquiry we had recently—was that about 900,000 people had opted out of the My Health Record. What's the current figure?
Mr Kelsey : The current figure is 1,147,000.
Senator WATT: So now over a million people have opted out from My Health Record.
Mr Kelsey : That's correct.
Ms Edwards : What's happened since the last occasion—remember, it was about three per cent. As we had expected and hoped, the rate of opt-out has trended down quite significantly. It's still coming in. We're getting close to the end of the opt-out period. We're still well under five per cent. So we're certainly on track to where we had expected and where the minister indicated he wanted us to land.
Senator WATT: On this point about coming to the end of the opt-out period, you're probably aware that last week this committee recommended a 12-month extension to the opt-out period, but that recommendation was immediately rejected by the minister. Probably, Minister, I need to put this to you: why is the government refusing to follow this sensible suggestion?
Senator Scullion: I can understand that you would believe it's a sensible suggestion, Senator, because it's your suggestion. Could I just indicate that we wanted a closure of the database in so much as we knew that the day after the books are closed anyone can close their My Health Record in any event, because the process is there at any time to say, 'I want to opt out now.' For those people in the future, there's not an opt-out date that is not available. We needed to close those in order to give the benefits of the My Health Record to the wider Australian population. It is so important to note that people can opt out the next day. The very next day, the following day, they still have an opportunity, as anyone does, across the process, to exercise their right to opt out. That is the reason that I understand the minister decided he would not follow specifically your advice.
Senator WATT: Just remind me: the current opt-out date is 15 November—is that right?
Ms Beauchamp : That's correct.
Senator WATT: When the minister previously extended the opt-out period for one month, he said that it 'gives Australians more time to consider their options as we strengthen the 2012 My Health Record legislation'. He linked that opt-out extension to the new and improved legislation. We had been told that that legislation would be passed by now, and that was part of the reason why we rushed our inquiry. Of course, that hasn't happened, and we now won't be sitting until a couple of days before the opt-out period closes. If it was so important to extend the opt-out period on the basis of the new and improved legislation, why wouldn't the government extend the opt-out period at least until a point after the legislation will be passed?
Ms Edwards : On the timing, in the period in which people can opt out—although, as the minister says, they can continue to leave the system at any time—the records won't be immediately created. There's about a month-long period after that in which paper forms, which we have talked about before, have to be reconciled and so on. There's actually a period until a date in December. The legislation will be back before the parliament well before then, we anticipate.
Senator WATT: You'd be aware that the opposition and others have floated a range of amendments that we think need to be made to this legislation to give people greater protection. Wouldn't it be a better way to go to wait until those protections are made and the legislation is strengthened before people face that cut-off date for an opt-out?
Ms Edwards : The amendments and the matters are for another day—
Senator WATT: It's for the parliament, yes.
Ms Edwards : All of the matters in the report are being considered. The legislation will continue in the parliament shortly. The opt-out period ends on 15 November, but then there's a month's period before any records are created. Obviously, the report has come down, it's being studied carefully in the department and advice will be provided by the agency. The key issue that the minister made clear in deciding not to further extend the opt-out period is the desire to make sure people have the benefit of the My Health Record as quickly as possible.
Senator WATT: Minister, does the government contend that the existing My Health Record legislation is now strong enough for the rollout to proceed, even though it hasn't been amended yet?
Senator Scullion: My understanding is that there'll be consideration not only of the report of this committee, which is a multiparty committee. And I understand there'll be consideration of improving the privacy elements of that. Certainly there's been a lot of input from stakeholders, from the privacy commissioner to the President of the AMA, which you'd be well aware of. I would think that the government—and someone can yell at me—will be considering amendments to the legislation to take into consideration some of those matters.
Senator WATT: Yes. That is the exactly the point, Minister: there have been a range of stakeholders providing some really constructive suggestions about how that legislation can be strengthened. The opt-out period closes on 15 November. We may not even get to debate this legislation and the amendments before the opt-out period ends.
Senator Scullion: On 16 November you can still opt out—that's the point. In terms of just this issue of opt-out, we're just ending it so we can actually say: 'That's the demographic we're dealing with. We can move this forward.' If somebody says, for any reason, 'I've changed my mind; I want to opt out,' they can opt out whilst this process is going on.
Ms Edwards : Some important issues have been raised in the course of the public debate. There are some things in the legislation already before the parliament. There are some additional matters in the Senate report. We're interested in all of those things, in terms of both potential legislation that might be preferred and administrative processes that the agency's looking at hard—to protect victims of domestic violence and all those other issues that are raised. This is a balance in making sure that as many Australians as possible can have the real health benefits, to save lives, through having a broad-spread My Health Record.
It's important also to remember the context. There are already more than six million people with My Health Record. Although I wouldn't for a moment say we don't take very seriously the concerns that have been raised—we do—there has not, to date, been any significant instance of the sorts of issues that have been raised. So we are confident that there are significant safeguards and standards in the existing legislation sufficient for it to continue, and we'll continue to look at improvement through the current bill, through the matters in the report and otherwise.
Senator WATT: Sure. But over a million people have now opted out, presumably because they lack confidence in the system.
Ms Edwards : For a range of reasons, no doubt—as they can. As the minister says, anybody who's concerned now can leave the system at any time.
Senator WATT: You'd be aware that both the AMA and the College of GPs have called for a further extension in the last week. Are those groups wrong to do so?
Ms Edwards : It's a matter of public discussion. Different views will be around. Those groups have also been really clear about the great benefits of My Health Record.
Senator WATT: You would remember that the opposition supports the concept of My Health Record as well. But it's now not only a Senate committee that has called for an extension. You've got two of the leading groups in the country, the AMA and the College of GPs, also calling for a further extension, and the government is just charging on.
Senator Scullion: No, what we've said is that it closes on the 15th; if you still want to opt out on the 16th, 17th or 18th it's still available to you. I'm not sure on what basis the AMA and the other organisations you've met have those concerns but, as we've indicated, we'll be seeking to clarify the My Health Records Act when it comes before parliament.
Senator WATT: In August, Minister Hunt justified the extension that he gave to the opt-out period at the time by saying it was a key request from the AMA and the College of GPs, so why is it that the minister listened to them then but he refuses to listen to them now?
Ms Edwards : I'm sure the minister's listening very closely to all comments being made and following debate. It's a matter of balance between the very great benefits that are to be gained by moving to a widespread My Health Record and responding to stakeholder concerns. We have to do all things at once—look at the things that have been raised; see what changes, administrative or otherwise, need to be made; and move towards a real step change in the way health works in this country.
Senator WATT: Has the minister, or his office, requested the department to work on any amendments or additions to the legislation in light of the recommendations of our Senate inquiries?
Ms Edwards : The minister has asked us for analysis of everything there and what options might be to either address them or not. We provided a range of advice on the things over months and months, including in relation to the report and including potential amendments. But it was generally advice on what's been raised and what we can or should do about it.
Senator WATT: So the minister has effectively provided the Senate inquiry reports to the department and asked for advice?
Ms Edwards : I think we got it straight off the website the minute it went up.
Senator WATT: Yes, I'm sure. He's asked for advice on the recommendations that were made.
Ms Edwards : It's an ongoing discussion. We've been providing advice and having discussions about this in an ongoing way. Whether there's a formal request to do it I'm not sure, but it's certainly our understanding that we're providing analysis and advice.
Ms Beauchamp : It's normal for the government to respond to such committee reports. Of course, we have been asked to look at the recommendations, and I think the minister wants not only to give due consideration to the committee reports but to maintain dialogue with other stakeholders as well. So I think he wants to take a very considered approach in terms of whether there should be any amendments to legislation, whether it needs to be clarified and what the minister said. So, yes, we're providing that advice.
Senator WATT: Has the department provided any advice that involves further amendments to the legislation?
Ms Beauchamp : We have provided options and advice, yes.
Senator WATT: But, to your knowledge, no decision has been made on that at this point?
Ms Beauchamp : The matter is currently under consideration.
Senator WATT: Okay. So you haven't been asked to progress any further amendments? It's a matter still under consideration?
Ms Beauchamp : Further amendments will be subject to the minister and the government, and the department quite rightly is providing options and advice on legislation.
Senator WATT: Okay. Back in July, the minister undertook to launch a new public information campaign about the My Health Record, and that now does appear to be rolling out with some advertisements starting to appear on TV. How extensive is that campaign?
Mr Kelsey : I'll take that. Can I invite my colleague Ronan O'Connor to come to the table, please.
Mr O'Connor : The communications campaign has ramped up for that additional month. You'll have noticed that the TV campaign started last Sunday. That's running for a period of three weeks until the end of opt-out. It ran last week, it's running this week, there'll be a break, and then it will run for the last week of the opt-out period.
Senator WATT: That's the TV component of it?
Mr O'Connor : Yes.
Senator WATT: My recollection is that there were other components for this as well, weren't there?
Mr O'Connor : Yes. We have increased paid media in relation to digital. We've also increased slots within AM radio, and we have also continued with the community engagement that has been happening on the ground, which has been led by PHNs.
Senator WATT: And what's the overall budgeted cost of that campaign?
Mr O'Connor : Which component of the campaign?
Senator WATT: The overall communications campaign for the My Health Record.
Mr O'Connor : The overall communications element for My Health Record, just from a comms perspective, is $27.75 million. That can be broken down into a number of different components. In relation to the paid advertising campaign, it's $5.45 million. Then there have been additional costs associated with the additional month in relation to the extension, and that comes in just over $5 million.
Senator WATT: So it was initially $5.45 million for paid advertising—TV, radio, online, in newspapers and whatever else. But there's now an additional $5 million.
Mr O'Connor : As a consequence of the month's extension and the increasing communication, yes, just over $5 million.
Senator WATT: Okay. Sorry, Minister. Just for me to wrap up on this point about a further extension of the opt-out, you're right that people can opt out at any point into the future, but the problem here is that, if people don't opt out before 15 November, whether they like it or not, a record's going to be created for them. That's different to the system we've had up until now, where someone had to actively choose to have a record created for them. So the problem is that, whether I like it or not, I'll have a record created for me, and I might not know about it if I haven't seen this communications campaign. The Senate inquiry highlighted a whole range of problems with these records around privacy and other issues. So again I'd just ask you to give some consideration to a further extension so that the legislation can be passed and the privacy issues can be dealt with before people start having records created for them.
Senator Scullion: I will pass that view on to the minister.
Senator WATT: And as I said, it's not just my view; it's that of the AMA and the college of GPs as well.
Senator DI NATALE: I also have some questions around My Health Record. Can I ask about the polling or research that's been done amongst health providers? Do you have any information on that? Can you talk to me about what the nature of that work looked like?
Mr Kelsey : We have a whole raft of benefits realisation projects looking at behaviours.
Senator DI NATALE: What are they called: benefits realisation projects?
Mr Kelsey : Yes. To determine the impact on clinical quality and efficiency of—
Senator DI NATALE: It sounds a bit 'hollow man' to me: benefits realisation project.
Mr Kelsey : Yes. It's the normal phrase in this—
Ms McMahon : I can maybe add to that. We constantly monitor the impact of the My Health Record as feedback on whether or not we're actually achieving the sorts of benefits that the government would expect from this investment. It's measuring a range of implementations of the My Health Record—whether there are any changes in clinical practice or consumer behaviours. One of those projects is the polling to which you referred earlier.
Senator DI NATALE: How is that done?
Ms McMahon : We basically run surveys. We have undertaken two surveys with just over 500 clinicians.
Senator DI NATALE: How do you select those? Is that a randomised sample?
Ms McMahon : I'll need to take that on notice. We went to market and have selected a provider to do that.
Senator DI NATALE: Is that a cross section of all GPs? It's not a self-selecting group who want to participate in the survey?
Ms McMahon : No. I will take the methodology on notice.
Senator DI NATALE: I am assuming they're reputable and they have done that—you've got a good cross-section. I think we spoke about this during the inquiry and I don't know that we had any hard data, but if you have any hard data on that. What are some of the questions that were tested?
Ms McMahon : Some of the questions were—in using the My Health Record have you experienced any benefits?—and, if yes, there's a range of options. For example, have you changed your prescribing behaviour? Have you had an improvement in the way that you have managed the medicines of the patient? For a pharmacy, it asks if they've had any changes in dispensing. For a general practitioner, if they have changed the way that they would order a pathology test. One of the benefits we expect is that fewer pathology tests will be ordered if people are able to see them.
Senator DI NATALE: You obviously test general trust in the system and doctors' confidence that information will be kept private. Is that one of the questions?
Ms McMahon : Yes, one of the questions—
Senator DI NATALE: Are you tracking that? I'm interested in knowing whether there was a change at all over the recent public media attention, shall we call it, in terms of doctors and health care professionals trusting the system, and their concerns around privacy.
Ms McMahon : Yes. We did ask a question in the sample where—we asked the question in April and May and then in July and August.
Mr Kelsey : We're going to have to take that on notice. We included some summary results in the submission we provided to the Senate inquiry. There is some data. To remind senators of those results, in the first wave, which was the first polling we did, which is statistically weighted and demographically significant, 14 per cent of GPs surveyed reported not needing to order a pathology or diagnostic imaging test, because they were able to see a previous test result through the My Health Record.
Senator DI NATALE: On the percentage of health professionals who believe patient information will be kept private? I'm interested in the most recent survey results, both before and after the recent controversies, I'll call them. The percentage of health professionals who believe that it will be safe from unauthorised access. The proportion of health professionals who use it for themselves or for their families, and whether they'd recommend it to patients, family or friends. And on people's attitudes towards the system—whether they believe there are potential benefits—whether those numbers are tracking up or down. I'm very interested in the trends over time with each of those specific indicators.
Mr Kelsey : We'll take that on notice. Some of the questions aren't quite the same as the ones you've asked, but we'll provide you with data.
Senator DI NATALE: Are you able to provide us with a full survey?
Mr Kelsey : Yes.
Senator Scullion: I think quite a sample of that survey is made by submission into the Senate inquiry.
Senator DI NATALE: I know you're not trying to hide it and you have said you're happy for us to look at it. It does impact on what the next steps look like, in terms of people's trust and clinicians' trust and how we continue to build that. Delete means delete. Can you tell me what the time frame for implementing that looks like?
Mr O'Connor : It will be implemented as soon as practically possible when the legislation changes.
Senator DI NATALE: What does that mean? Is that a technical challenge for you? When you say 'as soon as possible', what does that actually mean?
Mr O'Connor : We need to wait for the outcome of the legislative process to determine what it is. We're planning on the basis of hard deletes, complete deletion of all the records off the databases and so forth as well. There's a process in place where we'll make that happen as soon as practically possible after the legislation changes.
Senator DI NATALE: What's as soon as practical after the legislation.
Ms Edwards : I think the point is that until the legislation is passed—we need to know exactly what the parameters are. What's in the draft could change.
Senator DI NATALE: A hard delete is a hard delete.
Ms Edwards : Assuming that's what the parliament supports at the end of the day.
Senator DI NATALE: Hypothetically, if tomorrow there was a law that said hard delete means a hard delete—
Ms Edwards : In accordance with the current draft.
Senator DI NATALE: how long would it take?
Mr Kelsey : To clarify, if the legislation was passed through the Senate in the sitting week of 12 November, our anticipation is we would have introduced the changes to hard delete by about 7 December—before records are created, depending on the time in the legislation.
Senator DI NATALE: Is it possible to fully delete a record—is it going to create issues where you've got that gap, where records are created but the hard delete doesn't occur until afterwards?
Mr Kelsey : At the moment, depending on the timing of the legislation, the hard delete technology would be created before the records were created.
Senator DI NATALE: What was the date you said?
Mr Kelsey : 7 December, depending on the process of the legislation.
Senator DI NATALE: Is there any work undertaken to allow record-holders to delete individual items from their record?
Ms McMahon : They exist today. Today a consumer can go into their privacy settings and identify a particular document—
Senator DI NATALE: You can hide it.
Ms McMahon : You can hide it. You can also effectively remove it, which deletes it from the system.
Senator DI NATALE: That's a hard delete?
Ms McMahon : Of that specific part, but not the entire My Health Record of that person.
Ms Beauchamp : You can also tell clinicians not to upload it.
Senator DI NATALE: But in some instances I suppose that will happen regardless. I might go to the question of information being uploaded. Let's go to pathology and radiology providers, for example. One of the concerns that people have is that there are instances that actually happen right now where you might get a result and the result finds its way to a patient before the doctor has an opportunity to sit down and explain the result. Sometimes it can be something nasty. We know that happens now, but it's likely that we're going to see that become more common because doctors aren't going to be required to review tests before the results are uploaded. Is that right?
Mr Kelsey : That's not correct, no. Pathology and radiology reports have a seven-day lag before they are made available on My Health Record to the consumer.
Senator DI NATALE: But not all clinicians will talk to patients within those seven days. That result will be uploaded after seven days.
Mr Kelsey : We work closely with all relevant clinical bodies on determining that.
Senator DI NATALE: I understand that. I think in most cases doctors will do that, but there are always cases that slip through. In seven days a doctor might be busy, forgets to check a result, whatever, and it doesn't happen. Suddenly the patient can see it.
Mr Kelsey : That is correct.
Senator DI NATALE: That's a possibility, and that will be more common now because people will have the results uploaded to their own record, which they can access at any time. Are there any systems or processes in that setting that are there to protect patients?
Ms McMahon : I think we said more the opposite. You made a comment earlier in your question that this system changes the requirement for a doctor to review the results before speaking to the patient. The My Health Record doesn't change that requirement. The doctor is still required to do that before speaking to the patient and there's an obligation on them to provide feedback to the patient if there's an issue. We see My Health Record as providing the consumer the opportunity, in the event there's a failure in the test orderer actually reviewing that and getting on to them to provide them feedback, to see if there's a result and follow that up to preserve their own clinical safety and improve the quality of their—
Senator DI NATALE: I'm not saying there are not benefits to it, but there are also risks. At the moment, as a consumer, you don't have access to a centralised database where you can look up your own stuff and go, 'I had my pathology test done eight days ago, and here it is.'
Ms McMahon : Yes.
Senator DI NATALE: That doesn't happen now, whereas it will soon.
Ms McMahon : That's right.
Senator DI NATALE: And for those instances—there are certainly benefits to what's being proposed, but there are also risks. One of the risks is that—
Mr Kelsey : I think at the moment, if I'm not mistaken, if you've been a resident in Australia for up to three years you are able, for example, when your doctor orders a pathology test, to get the test results to be directed to you as well as your doctor at the same instance. I think there is quite a large volume—I don't know the exact numbers—of people seeing their tests at exactly the same time as their doctor.
Senator DI NATALE: As I said, it does happen now but it doesn't happen frequently. Usually tests are sent to the prescribing or authorising doctor, and you go back to see the doctor—your way of accessing that information is to go and see the doctor. That's the pathway. If a doctor hasn't seen it in seven days, it ends up on My Health Record and the patient's got access to this record—this can happen to everybody. It's going to be even more common where those errors are more likely to be picked up by patients who access their record and are curious. There are examples, in the instances you've just described, where someone asks and says, 'I want to see the result of my MRI scan.' I think there's one example of where someone got an MRI sent to their home and they found out they had a brain tumour, and they hadn't had a discussion with the doctor yet. You end up with this pathology result saying, 'No support, don't know what questions to ask, but I've got the radiologist's report that says "brain tumour".' My question is: what are the supports that are being built around that?
Ms Edwards : I understand the point, but it seems to us that, if you have a brain tumour and your doctor has failed to look at your report within seven days, the problem there is not with the—
Senator DI NATALE: No, no, sorry. In practice—I know from experience—a hundred people come in with a headache, and you might write a hundred referrals for a MRI but you don't know which one is going to have a brain tumour.
Ms Edwards : No, but on the one that does, you would look at it quickly and you'd ring them straight away.
Senator DI NATALE: You're getting these results in all the time. You would hope there is not a breakdown, but there are breakdowns. There are breakdowns. What I'm highlighting is that it's going to be more common. That's an extreme example, but there will be others. There'll also be language in reports that sounds alarming, but it may not be. There'll be questions raised by pathologists or radiologists where they're raising the possibility of X, even though it's a small possibility, and that might find its way to a patient.
Ms Edwards : We understand the point. There's been a lot of consultation with the sector about what is a reasonable period to expect the doctor to have a chance to look at it and contact the patient, and seven days has been arrived at as a fair point. There will be instances—and some of those instances will be saved by the fact that the patient's looked at it and been able to bring it to the attention of the doctor—where people might find nasty results when their doctor hasn't got around to it, or ones that they've misunderstood. We appreciate that. It is a balance between consumer choice and control over their own health and records and trying to avoid these circumstances.
Senator DI NATALE: I'm asking what thought has been given to structures and processes around that, for example. Let me give you a practical one: what if someone goes away on holidays? Can the doctor request that the result is not uploaded for longer than seven days? Is that possible, or is that seven-day period locked in?
Mr Kelsey : If the doctor and the patient agree that the results should not be uploaded to the My Health Record, that's well within the gift of the patient at the time the test is ordered. But it needs to the based on the consent of the patient. So, yes, absolutely, if that's the common view, that someone is going on holiday and they don't want to receive their result until the doctor has seen it, then it would not be uploaded to My Health Record at their discretion.
Senator DI NATALE: But, as far as you are aware, at this stage, the seven days is agreed and the responsibility is entirely now on the doctor to take care of what happens in those circumstances?
Mr Kelsey : That's the agreement that's been reached with the sector, yes.
Senator DI NATALE: Okay. Have we got more questions on My Health Record?
Senator SINGH: Yes, I do.
Senator DI NATALE: Perhaps we can go across to Senator Singh, Chair, and I'll just get organised here and come back.
Senator SINGH: Mr Kelsey, I think you'll remember that last time you were in this committee's hearings I asked you about your interaction with journalists; in particular, if you had sought for any journalist to change or remove any critical coverage, directly or indirectly. You chose to take that on notice. I've gone through some of your answers on notice. Over and above what you've already provided in answer to that question on notice, have you had any interactions with the website Healthcare IT?
Mr Kelsey : Healthcare IT?
Senator WATT: Or their US owner.
Senator SINGH: There are two different ones, but I'm asking about that one first.
Mr Kelsey : I'd have to take that on notice but, as I said at the last meeting, there are many, many health websites, those sorts of online websites. As I said at the last inquiry—I think it was an inquiry, rather than estimates—
Mr Kelsey : we talked about the fact that the job of the agency is to correct, where appropriate, inaccurate commentary on My Health Record. It is not to seek to correct criticism; it's purely based on factual accuracy. If there were factual inaccuracies in reports on the Healthcare IT website then, yes, the standard practice would have been to seek correction of those items.
Senator SINGH: That's why I'm asking about that particular website. The other one is the one Senator Watt referred to, the HIMSS. That is the Healthcare Information and Management Systems Society, which is a US-owned website.
Mr Kelsey : I'm not aware it's a website. HIMSS is an organisation that organises events.
Senator SINGH: Well, it has an online—
Mr Kelsey : It may well have a website, yes.
Senator SINGH: Yes, it has an online news interaction. I'm asking specifically about media coverage on either of those two platforms.
Mr Kelsey : There may well have been cases where we sought correction of articles published on those websites. Were they not included in the—
Senator SINGH: No, they're not included in the answer to the question on notice. You raise, obviously, a few other websites.
Mr Kelsey : We'll go back and provide any further interaction with that.
Senator SINGH: So there's no-one at ADHA who knows about those two platforms and who could answer that?
Mr Kelsey : Healthcare IT News is one of many websites that report on things like My Health Record. I think the request on the—
Senator SINGH: Okay. You'll take it on notice?
Mr Kelsey : Yes, that's fine.
Senator SINGH: Does ADHA have any sort of commercial or financial arrangements with HIMSS?
Mr Kelsey : I'd have to take that on notice. HIMSS is a company that organises events and runs a system for measuring the digital maturity of hospitals. I would say now that I don't think we do have any commercial arrangements with HIMSS. They actually have a big conference coming up in a couple of weeks in Australia. We may sponsor—
Senator SINGH: Are you a sponsor of that conference?
Mr Kelsey : It could be that we sponsor a booth at that conference.
Senator SINGH: Is there a financial component to sponsoring the booth?
Mr Kelsey : There would be if we were taking a booth.
Mr Kelsey : I'm informed by my colleague that we have a booth at the forthcoming HIMSS conference in Brisbane, which would involve a financial transaction of some sort.
Senator SINGH: How much are you paying HIMSS for that sponsorship?
Mr Kelsey : That I'd have to take on notice. It'd be small. I don't know exactly how much. It would be an exhibition stand, essentially. It's a conference which has many, many exhibitors. I can certainly find out how much we're paying for the stand.
Senator SINGH: Okay. So you are aware that there's some financial component as far as your sponsorship of the HIMSS conference is concerned, but you are not aware of any other interactions in relation to copy that HIMSS have published?
Mr Kelsey : Healthcare IT News, I'm pretty sure, is an online news report that HIMSS owns. But I don't think HIMSS itself publishes material. It doesn't have a website as such. But Healthcare IT News is—let me just check—
Senator SINGH: I'm actually online looking at it at the moment.
Mr Kelsey : Okay—Healthcare IT News. They publish—just like Pulse+IT and the other online trade journals—information about digital health, and they have certainly reported on My Health Record.
Senator SINGH: That's right. They have.
Mr Kelsey : What we will do is provide on notice any interactions we've had with them where we've sought correction of copy.
Senator SINGH: Yes, that was the question.
Mr Kelsey : I will provide that on notice.
Senator SINGH: Okay. I'd like to explore the issue of the Parliamentary Library's July FlagPost about My Health Record. As you're aware, that post was taken down and later amended after an intervention by the health department. Earlier this week we heard from the Finance and Public Administration Committee's hearings that the department's chief operating officer, Matt Yannopoulos, was the first to contact the Parliamentary Library with concerns. Welcome, Mr Yannopoulos. Who first alerted Mr Yannopoulos to the existence of this My Health Record FlagPost?
Ms Beauchamp : Before I let Mr Yannopoulos respond, could I just correct a statement you just made.
Mr Kelsey : I think you said that the Department of Health and the interventions we made led to the decision by the Library to pull down the article. The Library, as was articulated by Dr Heriot in the earlier committee, is an independent body and an independent agency. They make decisions based on the merits or otherwise of their own information. At no time did we ask them to amend or pull down the article. It was their decision. As to when the department was first informed of the article or the blog, I'll let Mr Yannopoulos say where he heard the information.
Senator DEAN SMITH: Secretary, your account is an accurate one. The Parliamentary Librarian made it very clear that the decision was hers and hers alone as an independent officer. I was a member of the Finance and Public Administration Committee earlier in the week, when she made that statement.
Ms Beauchamp : That's correct, yes.
Senator SINGH: Just to correct, what I said earlier was that the post was taken down and later amended after an interaction with the Department of Health.
Ms Beauchamp : I thought you said 'an intervention'.
Senator DEAN SMITH: Well, Senator Singh is changing her language now.
Senator SINGH: No, I'm not, because I have it written in front of me. So I know clearly what I said, because it's written down in front of me. So I'm not changing it, Senator Smith. We can go back through the Hansard and look at it.
Senator DEAN SMITH: I'm sure it will say exactly the same as what I just said now. So I guess we will unravel some of that, Ms Beauchamp. I wanted to ask Mr Yannopoulos: was it your idea to call the Parliamentary Library's Jonathan Curtis?
Mr Yannopoulos : It was a discussion I was having with Mr Kelsey and others. We were monitoring the media each day through the My Health Record opt-out period. The FlagPost was published, I think two days earlier, on 23 July. As it was getting a lot of media focus, particularly the focus on the legislation issue, we decided—and I took the action—to call Mr Curtis. I don't know if you've seen that Hansard from earlier in the week. I suggested that I would like them to have a look at the article. I would put in writing to Mr Curtis our concerns. I did that at 1.31 on 25 July. At 4.42 on that day—and these emails were tabled, I believe, earlier in the week because they were sought under FOI—he wrote back and said he disagreed and they weren't going to alter the article. We had another look and put some more points to him later that evening. I think I sent the email at 9.58 pm. Then, of their own accord, on the morning of 26 July they removed the article, and he emailed me at 8.42 to say he was doing that. I emailed him back shortly thereafter and said thank you. Then Mr Curtis rang my general counsel at 2 o'clock to say that they intended to republish the article with updates, and, at 6.24 pm on 26 July, the article was republished.
Senator SINGH: Thank you for those dates, Mr Yannopoulos.
CHAIR: We have five minutes to go for output 1.
Senator SINGH: I just need to finish this particular issue about the Parliamentary Library with the Department of Health. We're nearly there! In finance and public administration estimates on Monday, we heard that, after Mr Yannopoulos' contact with Mr Curtis, the Parliamentary Librarian, Dianne Heriot, got a message to contact you, Ms Beauchamp. How was this request conveyed to her?
Ms Beauchamp : I tried to ring her, after speaking to Mr Yannopoulos and our people, just to give her a heads-up in terms of some of the comments we had on the FlagPost.
Senator SINGH: To give her a heads-up?
Ms Beauchamp : Yes, that Mr Yannopoulos had been in contact with her people.
Senator SINGH: Why did you feel the need to personally intervene in that way?
Ms Beauchamp : It's not unusual for people to draw to the attention of whoever is in charge some comments and liaisons that agencies are having with their staff. I also reiterated the fact that there were some errors in the article, particularly the article's description of the My Health Record Act as a 'significant reduction in the legal threshold' in terms of protecting the privacy of an individual's health information.
Senator SINGH: Did the minister or anyone in his office ask you to intervene?
Ms Beauchamp : No. This was after I spoke to the Chief Operating Officer.
Senator SINGH: Did you have any conversations or contact with the minister or anyone in his office about this issue before you spoke with Dr Heriot?
Ms Beauchamp : No.
Senator SINGH: I've run out of time, but I want to ask Mr Yannopoulos: when was the last time you or anyone else from this department initiated contact with the Parliamentary Library about a FlagPost concerning health policy?
Mr Yannopoulos : I've never done it. For anyone else, I would have to take it on notice.
Senator SINGH: You've never done it. Have you ever done it, Ms Beauchamp?
Ms Beauchamp : It would be remiss of us in terms of any factual information that was provided about a policy that we were administering on behalf of the government if we thought there were inaccuracies. It's not unusual for us to contact various organisations where we think there might be a problem.
Senator SINGH: So it's not unusual, but you've never done it before?
Ms Beauchamp : I haven't rung the Parliamentary Librarian because no other information like this has been brought to my attention. It was the week after the commencement of the opt-out period for My Health Record. There was some confusion in the public domain, and I just wanted to put on the record what our view was in terms of administering the policy directions of government based on what the Digital Health Agency had raised with us.
Senator SINGH: Does the Department of Health have proper formal processes and procedures for contacting the Parliamentary Library?
Ms Beauchamp : I don't think we need processes and procedures to have a conversation with a public official.
Senator SINGH: Okay; thanks.
Senator GRIFF: Can I go back to the 1.4 million who opted out. Have you got that broken down by state?
Mr Kelsey : We don't, I'm afraid.
Senator GRIFF: On notice, could you provide that by state and also by gender and age?
Mr Kelsey : I'm not sure we will be able to do that, because, obviously, when people opt out they don't provide us with a geographical location. But if we can, we will provide it.
Ms Edwards : If I can jump in: of course, the opt-out period hasn't ended and the paper forms are not yet reconciled. I wonder if what you're really after is those breakdowns of the final—
Senator GRIFF: I would like to see it at this stage—at this point.
Ms Edwards : I only raise it because I think it might be a large amount of effort on an unfinished process—
Senator GRIFF: Yes, fair point.
Ms Edwards : and I'm not sure whether it's actually going to be feasible or easy to do it. Obviously, I understand why you want the information, and it would be very important at the end. But, for example, you'll have virtually none in remote areas because we're doing paper forms there for their convenience. So I wonder whether if it would be possible to give you a breakdown of the final, if it's possible.
Mr Kelsey : If it's possible, yes. I'd agree with my colleague that it would be more useful to have that breakdown at the end of the process.
Senator GRIFF: That's fine. I'd also like to know, and perhaps you might be able to explain—whether it was your drafters or after the approaches of others—how section 70 of the act, relating to law enforcement agencies, became part of the actual act. Was it a decision made by health department drafters or was it after approaches by the A-G's Department or someone else?
Ms Edwards : You're talking about in the original legislation?
Senator GRIFF: Section 70, yes.
Ms Edwards : I don't know if we have anyone who'd have the detail, but they're reasonably standard types of provisions. I don't know what exactly happened, but there are things that the drafters say to you, like, 'These are the sorts of things that you have in a normal act like this.' It's some years ago now, obviously, but certainly it's not a surprising provision to find—the one that we're now proposing to alter.
Senator GRIFF: Have there been any access requests from law enforcement agencies to date?
Ms Edwards : 'No', I think, is the answer.
Mr Kelsey : Not to the agency.
CHAIR: We've run out of time, because it's now past 3.15.
Senator GRIFF: Chair, I've got about 10 minutes worth on My Health Record. Everybody else has had that.
CHAIR: Are we at outcome 2?
Senator WATT: We'd be happy for this to go on a bit longer, Chair, if you'd like.
CHAIR: Then we give up outcome 2?
Senator WATT: Yes. We think, particularly later in the night, we'll be able to really contract the amount of discussion.
Senator SIEWERT: Save time.
Senator WATT: For outcome 5, for instance, we don't have too much.
CHAIR: Okay. And what happens to outcome 2? That's mental health.
Senator SIEWERT: No, we'll need our time there.
Senator WATT: I think we'll need all our time there. It's just Senator Griff's been waiting a fair while, so we'd be happy—
CHAIR: I think some of those questions will have to go on notice, unfortunately, because I need to give Senator Di Natale some time.
Senator DI NATALE: I think what Senator Watt's saying is we're probably going to make up quite a bit of time, because, like you, Senator Watt, we're going to be able to contract some of outcome 5. I suppose what we're seeking is permission to maybe just spend a little longer on this.
CHAIR: Do we know what outcome you'll be giving up? Because we will let the people go.
Senator SINGH: We'll make the time up, I think.
Senator WATT: Yes. It's not so much that we will not do anything, but we won't need as much time for outcome 5 as the program says.
Senator SINGH: We'll make up it up later on.
CHAIR: All right.
Ms Rishniw : Senator, you asked about law enforcement agencies and requests. The department is aware of only one request from a law enforcement agency in the six years of the operation of My Health Record. It was at that time from the Tasmanian police in relation to a serious murder investigation, and no records were released.
Senator GRIFF: All right. I understand from some clinics that the default option for their practice management system is to upload all new patient records to the system. For patients with an MHR, the new record goes into their MHR, which is pretty obvious. But what happens to the records of patients who do not have an MHR if their records are being uploaded to your system?
Ms McMahon : If a patient doesn't have a My Health Record, no records from the local system are uploaded into the My Health Record.
Senator GRIFF: But I understand that the practice management system is still giving you everyone, with new records included even if patients don't have one, because the practice doesn't necessarily know that that person has opted out. So, if the bulk is given to you, do just ignore all records that don't have a match in My Health Record?
Ms McMahon : No, it doesn't work that way. There's a call made from the practice management system which is called, I think, 'get My Health Record', and it's a query to the system: does a My Health Record exist for this individual? It uses the individual healthcare identifier, or the IHI. An answer is returned, which is 'no' if they don't have one, and then no documents are sent.
Senator GRIFF: I've also had a constituent approach my office with concerns about records that have been removed from his MHR by an entity defined only as 'an external provider'. He contacted MHR and was told three different stories. One person told him it looked like the records had been removed by a doctor, another said Medicare had removed them, and a third said it appeared to be a coding error. That is obviously an unsatisfactory state of affairs. Given it's a system that permits record owners to know exactly who has accessed their My Health Record, why is an identity defined as 'an external provider'? How can that happen?
Mr Kelsey : It's difficult to comment on an individual case. We'd have to look at that. But I'm not immediately aware of such a denomination being possible within the system. The only denomination of a provider would be the name that is given to what's called the HPI-O, the organisational identifier. If there were one that was attributed to something called an external provider, that would be the name of a thing. And I'm unaware of the name of a hospital or the name of a pathology company that's 'external provider'. If that individual wants to make contact with the agency, ring the call centre, we can obviously investigate that. But the way the system is set up is to identify the identity of the organisation.
Senator GRIFF: Okay. I will pass that on to my office.
Ms Edwards : Just to be clear, I don't think—in our understanding of how the system operates and how it is coded—that aligns with the agency's understanding. We'd say that obviously there needs to be an investigation. If you can provide all those details to the agency, we will investigate that particular case and come back to you directly.
Senator GRIFF: Have you established metrics for dealing with problems within your organisation? Are there particular metrics that you have in place for how long it will take?
Mr Kelsey : Yes. We monitor customer complaints. Ronan, perhaps you could speak to that.
Mr O'Connor : In relation to customer complaints and consumer interaction through the call centre, there is a small survey that we ask people to complete at the end of their calls. On that basis, the satisfaction rates at the moment are roughly 95 per cent. That's particular to the call centre itself. We also have a process internally, within an agency, where we capture correspondence in that agency, and that's responded to.
Senator GRIFF: Thank you. That will do for me, Chair.
Senator DI NATALE: I'm interested in what the government's doing in terms of engagement with the College of General Practitioners; in particular, the concerns they have around the current practice incentive payments used as the tool to incentivise, if you like, GPs. I think the college and others are concerned that that's not an appropriate tool to remunerate GPs for the time it takes to fill in the information. The whole thing relies on uploading data. Are you currently considering any other forms of remuneration for general practitioners to complete this information?
Ms Edwards : So you're asking about ePIP?
Ms Edwards : We haven't got the ePIP people here. The people who know that stuff aren't physically here at the moment.
Ms Rishniw : I can answer part of that question. In terms of the Electronic Practice Incentive Program, which is part of the broader incentive program to GPs: that is a program and a payment that actually looks at a range of things. It looks at better digital practice, common use of terminology, improvements in systems. My Health Record is one of five criteria of eligibility that are used under that program, and it is by no means the only criterion. So it's one incentive payment to try to improve digitisation of GPs across—
Senator DI NATALE: Yes, across general practice.
Ms Rishniw : Indeed.
Senator DI NATALE: I suppose my question is: is there any other payment model that's being looked at to make sure the information is being uploaded to My Health Record?
Ms Rishniw : We would hope that the benefits of the system actually incentivise upload by GPs.
Senator DI NATALE: But it takes time. All this stuff takes time in general practice. I know there's a long-term benefit, but they've had a huge freeze on their Medicare indexation for many, many years. The cost of providing those general practice services increases but their payments haven't, and this is another burden on their time.
Ms Edwards : It's a big question. We are, as you would know, redesigning some of the other PIPs at the moment and talking very intensely with the college and others about that—that's the one that's going to be the PIPQI. We are obviously going to have a look at the ePIP requirements, because the one that relates to My Health Record will be affected by the opt-out, given that so many records were created, and so on. We have a number of forums where we talk with the AMA, the RACGP and others about all sorts of issues, including PIP, My Health Record and so on. If you're asking: is there a current proposal to pay GPs to upload to My Health Record? No, there isn't. But we're continuing to talk to them generally about primary care and all the different bits that make up the way we have payments to GPs in primary care.
Senator DI NATALE: Is it fair to say that you are looking specifically at trying to provide a model that remunerates GPs for uploading information?
Ms Edwards : No, we're not.
Senator DI NATALE: So you're saying you feel that the current ePIP—I mean, it might be redesigned, but it's not targeted specifically to My Health Record—
Ms Edwards : We're having a general discussion with the peaks about how primary care happens and how we're going to improve it, but we do not have a specific proposal to pay people for uploading into My Health Record.
Senator DI NATALE: You're asking GPs to do something that's going to take time and means they can see fewer patients, which means they get less income—it's pretty straightforward. I know there's a benefit. As I said, I support doing it. But you are putting another impost on general practitioners, who have been right royally screwed over because of the MBS freeze. This is another burden. I'm just wondering whether any consideration is given to remunerating them for it.
Ms Rishniw : I'm sure the agency can clarify. My Health Record, for most practitioners: the more they use it, the simpler it will be. It's a two-click process at the moment if they're using it and they've got compliant software.
Senator DI NATALE: That's not the feedback I'm getting.
Ms Rishniw : Ideally, the more practices use My Health Record and the more consumers use My Health Record, the simpler it will be and the more useful.
Senator DI NATALE: Sure. Again, right here and now you're asking them to do something that means they're going to see fewer patients and they're going to take a hit.
Ms Edwards : We hear the comment, and it goes to the whole issue of primary care and so on. I think what Mr Kelsey and others can talk to you about is all the work that's been done with the medical software industry to make it a very seamless and, as Ms Rishniw said, a two-click or even less process. That stuff is still embedding and it'll become less difficult—it's a training and learning thing as well. That doesn't go to all of the things you've raised, but it is actually the key focus. I don't know if you want to comment on that, Mr Kelsey?
Mr Kelsey : Not on remuneration.
Ms Edwards : No, but on how—
Mr Kelsey : Yes. Perhaps I could invite my colleague Dr Meredith Makeham to give a sense of the amount of work we have done to work with the College of GPs and other colleges representing general practitioners, as well as the broader medical community, on making My Health Record as streamlined and as useful to them as possible.
Prof. Makeham : Thank you. The first point to make about this is the actual time that it takes for a general practitioner to put a shared health summary into My Health Record. I'm a practising general practitioner also, for context. It's actually, in the proprietary software that's most commonly used, three clicks or four clicks. It should take 20 seconds or so, perhaps 30 seconds. And it would depend on the quality of the data in the GP's system and their appetite to check the accuracy of the information going into the shared health summaries they actually upload.
In terms of the effort that's been put into making the software more user-friendly, there's been a lot of work that the Australian Digital Health Agency has done in collaboration with the vendors who create the software and that interface. In fact, the systems have been streamlined as much as possible. There's also been a lot of work that's been done with the Royal Australian College of General Practitioners. I'm a former member of the Expert Committee—eHealth and Practice Systems. I am aware that, yes, it does take a little bit of time to put a shared health summary up, but it's quite minimal.
Senator DI NATALE: As you said, it depends a bit on what your system already looks like, doesn't it?
Prof. Makeham : Yes.
Senator DI NATALE: Part of the problem here is that if you're running a very modern, efficient digital practice then it's reasonably straightforward, but if you're not then the demands are significantly higher than what you've outlined, aren't they?
Prof. Makeham : Yes. I think the important thing to reflect on about that is that My Health Record is actually shining a spotlight on the data quality sitting in all of our practice software systems. Of course, as we become more familiar with the method for putting shared health summaries up and we're exposed to the data quality in our systems, it's actually an opportunity for us to have a conversation with our patients about the accuracy of their medications. It's a great safety benefit for people to have that opportunity to have a shared health summary put up.
Senator DI NATALE: Thank you. I'm done.
Senator GRIFF: Just very briefly, I'd like a bit of clarification in relation to accessing public and private hospitals. Will every junior doctor and every nurse have their own, as I understand it, HPI-I, an Individual Healthcare Identifier, or will they have access through a HPI-O—in other words, the organisation? Is it through an organisation or will they all have an individual identifier?
Ms McMahon : In terms of hospital staff, there's a legal requirement, and we have a portal operator agreement—a contract—with each hospital so that, when they connect to the My Health Record, they have the hospital connection. That is the core connection. Some hospitals—basically all of the private hospitals and some public hospitals—also enter and send us the HPI-I for each of those healthcare providers, but others use their local authentication—that is, the local log-ins that the nurse or junior doctor or others would use to authenticate themselves within their local system.
Senator GRIFF: So, one log-in to the system per hospital is possible?
Ms McMahon : No. We have one connection for the hospital, which is the link from that hospital through to the My Health Record. We capture that and—
Senator GRIFF: But, if somebody is logging into the terminal, they would either have—
Ms McMahon : If they're logging into the terminal, then their local log-in is retained or they capture the HPI-I. They must do one or the other, but it must go down to the individual person who is logging in. That's a requirement in the legislation and under our portal operator agreement.
Mr Kelsey : You can't log in as an organisation.
Senator GRIFF: I'm getting a little confused because you're kind of saying both. It could be one or another?
Ms McMahon : It is.
Senator GRIFF: I'm working in XYZ hospital and we just have a log-in for the organisation. So Dr Di Natale, next to me, could use that to go in, although he might have a separate identifier as well. But he could go in and log in or I could log in using the same password if it's an organisation set-up. Is that correct?
Ms McMahon : No. Dr Di Natale would have his own log-in as Dr Di Natale to the Cerner implementation, or whatever it is, in Royal Prince Alfred Hospital. And then we have one pipe from that hospital to the My Health Record which sends information around the authentication of that person. It could be that Dr Di Natale has an HPI-I captured by that hospital system or it could be just the local log-in they use with their user name and password. But, either way, Dr Di Natale would need to be identified as an individual.
Senator GRIFF: Everyone on that floor would be using an individual log-in?
Mr Kelsey : Yes, by law they have to do that.
Senator GRIFF: Thank you.
ACTING CHAIR: Thank you. Are there any other questions? There being none, we'll move on to outcome 2.
Mr Kelsey : Sorry, Chair, could I clarify one point that I made earlier on. Healthcare IT News, as we clarified, is an online news provider in digital health. I was mistaken in that, in the question on notice that we provided back to you, you asked, 'Could you provide some examples on areas where you sought to correct inaccuracy?' and, in fact, Healthcare IT News isn't included on the list which covers a number of other providers. So we will, as I say, on notice, provide you with requests for correction of Healthcare IT News reports. But I was wrong to say I thought they were already included in the response to the prior question taken on notice.
Senator SINGH: [inaudible] on notice.
Mr Kelsey : Okay; yes.
Senator SINGH: Both—the one for which you're paying sponsorship to the conference.
Mr Kelsey : Yes, we will.

----- End Relevant Transcript.
David.

7 comments:

  1. The committee is focussed on legislative issues. There seems to be an underlying (unspoken) assumption that the system is secure, adequately architected, functional and fit-for-purpose providing significant benefits to all stakeholders.

    To obviate against much of the criticism that has been levelled at the ADHA, that most of the 6 million registrations were achieved after employing somewhat questionable methods for enrolling these people, it would not be inappropriate for each individual to be sent a short unambiguous questionnaire asking them to please confirm their wishes to be registered for a My Health Record.

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  2. “Ms Beauchamp : You can also tell clinicians not to upload it.” Is it that simple really?

    A hypothetical tale (surely not reality?):
    Just say I go to my GP and he suspects an STD, takes a sample and orders a pathology test and some medication. I live in a small town, and so request that he does not upload the Shared Health Summary to my My Health record. Meanwhile, the sample and request for pathology go off to the pathology lab in Brisbane and I get the medication dispensed from a pharmacy – in another town, because the pharmacist in my home town is my brother in law. Just in case, I ask the dispensing pharmacist not to upload the dispense record to my My Health Record.

    OK, then some months afterwards I log in to my My Health Record. True there is no Shared Health Summary from my GP there – what a relief!. But my record clearly shows the medicine I had dispensed (specific for this condition) and the pathology result shows the result of my pathology test. Oh no! This is because the medicine was dispensed via the PBS and the PBS claim was automatically uploaded into my record. The pathology lab in Brisbane received my sample for testing, but I was not there in person, and my sample could not give voice to my desire not to have the result uploaded. I realise with embarrassment any healthcare provider that I have visited in the meantime (my dentist, the local hospital where I visited the ED with a broken finger, and my local pharmacist friend) has now seen my My Health Record and now knows about my embarrassing STD. Silly me, I thought when I asked the GP not to upload the details of the STD, that this would also not upload any corresponding documents, such as the PBS claim data and the pathology result. I stupidly thought there might be some sensible linking between the documents in my record. I try to hide these documents in my record (the PBS claim and the pathology result), but can see from the access list that these documents have been viewed. And possibly downloaded…

    I wish someone had explained it all better before I decided not to opt out.
    Please someone tell me this hypothetical is not possible.

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  3. Your privacy is like a balloon, one Tim prick and it’s gone.

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  4. That should have been “pin prick”, silly digital app must have put 2 and 2 together and made a judgement call for me.

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  5. "I stupidly thought there might be some sensible linking between the documents in my record."

    Silly boy. My Health Record is a dumb document management system with no smarts at all. That's what makes it so dangerous to patients and useless to health providers.

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  6. Is it? But it is being spouted as a watershed open innovation platform to rival Those who actually do provide open innovation platforms

    From the ADOHA

    By supporting a thriving digital health industry delivering world-class innovation, the following will be delivered by 2022:

    Australians will have better and more informed access to safe, quality health applications, tools and content, through a digital services endorsement framework that will be co-produced with clinical, design and innovation leaders.
    A new health innovation exchange will be established, where clinicians, researchers and entrepreneurs use data to identify opportunities to work collaboratively on designing digital health solutions.
    The Agency will work with industry to evolve the developer support program to reduce barriers to innovation and enable opportunities for better integration with the My Health Record system and other digital services.
    The Agency will consult with the community on development of a comprehensive approach to digital inclusion, to ensure new innovations do not leave anyone behind.
    Adoption will be accelerated by providing best practice design principles and guidelines to improve usability and user experience.

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  7. Delusions of grandeur.

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