SENATE
COMMUNITY AFFAIRS REFERENCES COMMITTEE
Thursday, 20 September 2018 Members in attendance: Senators Gichuhi, Martin, Siewert, Singh.
Terms of Reference for the Inquiry:
To inquire into and report on:
The My Health Record system, with particular reference to:
a. the expected benefits of the My Health Record system;
b. the decision to shift from opt-in to opt-out;
c. privacy and security, including concerns regarding:
i. the vulnerability of the system to unauthorised access,
ii. the arrangements for third party access by law enforcement, government agencies, researchers and commercial interests, and
iii. arrangements to exclude third party access arrangements to include any other party, including health or life insurers;
d. the Government's administration of the My Health Record system roll-out, including:
i. the public information campaign, and
ii. the prevalence of 'informed consent' amongst users;
e. measures that are necessary to address community privacy concerns in the My Health Record system;
f. how My Health Record compares to alternative systems of digitising health records internationally; and
g. any other matters.
Present:
EDWARDS, Ms Caroline, Deputy Secretary, Department of Health
KELLEHER, Mr Brian, Assistant Secretary, Digital Health Branch, Portfolio Strategies Division, Department of Health
KELSEY, Mr Tim, Chief Executive Officer, Australian Digital Health Agency MAKEHAM, Professor Meredith, Chief Medical Adviser, Australian Digital Health Agency McMAHON, Ms Bettina, Chief Operating Officer, Australian Digital Health Agency
O'CONNOR, Mr Ronan, Executive General Manager, Core Services Systems Operations, Australian Digital Health Agency
RISHNIW, Ms Tania, First Assistant Secretary, Department of Health Committee met at 17:04
CHAIR (Senator Siewert): I declare open this hearing and welcome everyone here today. We acknowledge the Ngunnawal and Ngambri people on whose land we are meeting and pay our respects to elders past, present and future. This is the third public hearing in the committee's inquiry into the My Health Record system and I think everyone has made a submission. Before we start taking evidence, I remind all present here today that, in giving evidence the committee, witnesses are protected by parliamentary privilege. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to the committee and such action can be treated as a contempt to the Senate. It is also a contempt to give false or misleading evidence. We prefer all of our evidence to be given in public but, under the Senate's resolutions, witnesses have the right to request to be heard in private session. If you want to do that, let us know. I would now like to welcome officers from the Department of Health and the Australian Digital Health Agency.
I know you have all been given information about the parliamentary privilege because I asked you that the other day. I remind witnesses what we can and can't do. I hope that is okay. Did anyone want to start with an opening statement?
Ms Edwards: No, thank you. We will launch into questions.
Senator SINGH: I first have some questions for you, Mr Kelsey. What were the circumstances that led to your resignation as the head of Care.data in the UK NHS?
Mr Kelsey: I was the National Director for Patients and Information in England. There were no circumstances of the resignation over Care.data. Would it help if I gave you the history of Care.data because I think there has been misunderstanding about what that is about.
Senator SINGH: I am interested in the circumstances of your resignation.
Mr Kelsey: I resigned in 2015, following the agreement by the Chancellor of the Exchequer in England to invest 4.8 billion pounds in digital health in the UK as a result of a strategy that I had led the development of.
Senator SINGH: Was that Care.data?
Mr Kelsey: No, nothing to do with Care.data. Care.data was 18 months before I resigned from the NHS. I did so because I took the view, as people in public service often do, that it was right to go out on a high note. It was widely regarded as a very important achievement for the health service that we achieved that funding round, and I was either going to do five more years of implementation or do something else, and I had been offered another role.
Senator SINGH: What was the system called you were setting up? I thought it was Care.data but what was it called?
Mr Kelsey: I ran all the national infrastructure and technology in the NHS, which included a range of programs—care record, e-referrals, the spine. I was responsible for NHS England for commissioning all of those services from a variety of partners in the National Health Service. There were many projects. The overall strategy that I was responsible for, both designing and subsequently implementing, was called Personalised Health and Care 2020 and that is the basis in which NHS is currently making investments in digital services across England.
Senator SINGH: Is that similar to the My Health Record system?
Mr Kelsey: Within that portfolio, there is a service called the Summary Care Record, which is national in England, which I oversaw and which provides clinicians with access to a much smaller summary of a person's health information and was designed to support the urgent and emergency user case. It covers about 98 per cent of the English population and is not visible to patients or citizens themselves, but is used in the background. So it is
similar, as a national repository, providing clinicians to access of some level of shared information, but different to My Health Record for a number of reasons, notably that the patient controls and the consumer power that My Health Record provides.
Senator SINGH: I am sure you are aware of the article in The Guardian that refers to Phil Booth, the coordinator of the British privacy group medConfidential. The article talks about you, as the person in charge of implementing My Health Record in Australia, but also in charge of setting up care.data. Phil Booth says 'The parallels are incredible. It looks like it is repeating itself, almost like a rewind or a replay,' in relation to My Health Record and care.data, which was abandoned, I think, by the UK. That is why I am asking the question. I am trying to understand the cancelled care.data system in 2016—I think there was some investigation into that and how your role equates with that, and your current role here with My Health Record.
Mr Kelsey: Thank you for that question. I am very happy to give you the facts of the situation around care.data. It was a program to link, for secondary uses only, GP and hospital data. It was never intended as any kind of support for direct-care services. It was a program that I stopped in 2014, because, before we had launched it, it became evident to me and to the Secretary of State for Health in the UK that the legal protections were not adequate for secondary uses of health data. In particular, there was no legislative protection for solely commercial uses of secondary uses data. I stopped the program and we then introduced legislation that now has put in place protections that, frankly, are already in the Australian context agreed within the My Health Records Act 2012. But in England we didn't have similar protections. We were lucky enough to be able to put an amendment through the care bill in parliament in 2014 and then we also redesigned the way in which the agency responsible for administering secondary uses and care.data went about their decisions about who should have access to that kind of secondary uses data.
The British government has recently relaunched the opt-out. In July, English citizens were offered the opportunity to opt-out of care.data, essentially. So, the program to link GP and hospital data was redesigned by me before I left and is now operational, and opt-out is being offered across England. Just to be clear, there was no sense in which this was an abandoned project. The need to analyse the linked data set for the NHS was paramount in terms of trends analysis, public health protections and so on. That is now running and opt-out has been offered nationally from July, I think, this year.
Senator SINGH: It is now an opt-out system?
Mr Kelsey: It always was an opt-out system.
Senator SINGH: I understand some of the protections you refer to that weren't there were in relation to drug and insurance companies being able to buy information about patients' mental health conditions, diseases and smoking habits. Obviously, fairly major changes were made to provide those protections. Mr Booth's position highlights that our system, My Health Record, 'seems to be the 2018 replica of the 2014 care.data'. Could you say whether or not you agree with that?
Mr Kelsey: No, and Phil knows perfectly well that is not the case. care.data is for secondary analytic uses. The program that is currently operational is for secondary uses of data. This is the analysis of data based on people's ability to opt-out, should they wish to. It is specifically limited to general practice data in England and to what we call the Hospital Episode Statistics database, which is a central repository of hospital data collected by NHS Digital. My Health Record is a system of direct care and completely not comparable to care.data. A number of people have made that assertion and it is just not correct.
Senator SINGH: So, the operations of My Health Record do not reflect the operating principles and plans created for care.data, which you were part of?
Mr Kelsey: As I said, I had the good fortune, with the British government at the time, to put in place legislation to provide protections that are already provided in the kind of legislative context that Australia has. England has now built on that basis, I think, a very sound foundation on which to enable secondary uses data to be analysed on the basis of individual rights to opt-out. The model for My Health Record is very different to that which prevails in England. The only really comparable system, which I have tried to explain, is comparable only in the sense that it is about a central repository sharing information as a Summary Care Record—which is in our submission—as a more reliable and useful comparison. Summary Care Records has been extremely successful. My understanding is that my former colleagues in the NHS are now planning to open it up to patients and citizens for their access, partly based, indeed, on their insights into the My Health Record project.
Senator SINGH: Which agency or authority regulates, or monitors or approves the actions of the work of the ADHA?
Ms Edwards: It is a portfolio body of the Health portfolio. Mr Kelsey reports to the minister, I believe.
Mr Kelsey: I am a corporate Commonwealth entity. I have a board. I am accountable to the minister in exactly the way that corporate entities are. We also operate under an intergovernmental agreement with states and territories and the Commonwealth in relation to work programs to implement the National Digital Health Strategy.
Senator SINGH: What ethical framework exists that informs the operations of ADHA?
Mr Kelsey: We have a very specific rule that we can obviously share with the committee—it is legislated— which specifically identifies the purpose and role of the agency and expectations around the way in which it should operate.
Senator SINGH: Did you say it is a rule?
Mr Kelsey: Yes, the Australian Digital Health Agency Rule, which founds the agency.
Ms McMahon: The PGPA (Establishing the Australian Digital Health Agency) Rule.
Ms Edwards: Of course, the agency is subject to the PGPA act in its entirety, as well as the rule made under that legislation, just like—
Senator SINGH: Mr Kelsey, in answer to my question about an ethical framework you referred to this rule.
Are you able to table that?
Mr Kelsey: Yes, of course. As my colleague says, we are subject to the PGPA Act, first of all. That accounts for the ethical requirements that, of course, the public servants in that context need to meet. In addition, there is a specific legislated rule that founds the agency and describes its objectives, which I am very happy to table.
Senator SINGH: Thank you. That would be great.
Ms Rishniw: If I can add to that. The Privacy Commissioner also has a clear role in oversighting the agency and any privacy issues.
Senator SINGH: I would like to now ask the department about the Law Council, which this week added their voice to concerns about how the My Health Record could be used in relation to domestic violence. They said records could be accessed by parents who are subject to apprehended domestic violence orders, possibly exposing children or other parents to risks. What do you say in relation to that?
Ms Edwards: Obviously, the government and the Department of Health take very seriously our obligations to ensure that we protect the most vulnerable people. We don't add to any of those risks. Actual potential victims of domestic violence fall into that category and that is why the framework for My Health Record includes very stringent privacy choices, which can be accessed quickly in emergency circumstances, and it is why the agency has done a lot of work on this particular issue, including talking to stakeholders and community groups involved with protecting women and children escaping violence, and so on. They will be able to talk to you about the measures they have put in place and the discussions they have had.
Senator SINGH: The Law Council says:
The current definition of 'parental responsibility' under the act exposes the health records of children to misuse. The legislation needs to protect the location and identity of victims of family violence from being shared with perpetrators.
Has this been considered? Has the department considered this?
Ms Edwards: It absolutely has been considered. That's why there are all sorts of mechanisms for people to go in and change the access environment in their records. But we are very interested in what the Law Council and others have to say and we are always interested in hearing these things and we are continually reviewing those settings and so on. But, as I say, one of the key things to do here is actually to talk to stakeholders out in the community about what's needed, and that's something we're continuing to do through the agency throughout the opt-out period.
Senator SINGH: Do you share the concerns expressed by the Law Council? They've outlined that abusive partners could use the My Health Record records to locate, or at least narrow down the location of, their children or former partners. Is this a concern for the department?
Ms Edwards: It would be an absolute concern if there was—
Senator SINGH: What the Law Council is saying?
Ms Edwards: We are listening to what the Law Council is saying, but perhaps one of my colleagues could outline exactly what the situation is in relation to a person escaping, say, a violent home and how they can use the record to ensure those sorts of details are not available to an abusive partner.
Ms McMahon: The issue comes where a parent is an authorised representative for a child's record. That permits them access. They can log on and see that child's record, as an authorised representative. I think what the
Law Council was talking about is, if an abusive ex-partner accesses the child's record, they are able to see, for example, discharge summaries from a hospital, which would identify that a child had received care in that facility or any other healthcare facility.
Practically speaking, the agency has operational processes in place to respond to those situations so that a consumer—potentially a mother fleeing a violent situation—could contact us and raise concern about safety for herself or the child. The ex-partner would not be able to see the mother's record but could see the child's. We would immediately suspend that record in terms of stopping the authorised representatives from accessing it. We do that immediately and then we undertake an investigation to ensure that any sort of access is not putting the child at risk and those records can remain suspended while there's any risk of that occurring.
We've also, as Ms Edwards mentioned, been talking to a number of organisations, including Women's Healthcare and Children's Healthcare Australasia and their member hospitals, Women's Legal Service Queensland, Australian Women against Violence Alliance and others, to determine the different dimensions of this issue and how it could be addressed in the short and the long term.
Senator SINGH: It could be too late. With everything you just said, it could be too late, couldn't it? You're talking about a domestic violence situation, and I think this is why the Law Council are raising this particular example. What are you going to do about this? You've highlighted that it is a concern to you as well. Are you going to be organising a meeting with the Law Council? You're saying that you're reviewing and so on. What does that actually mean? Can we have something where we can have a bit more faith in what this reviewing is going to be and how you're going to take this issue up that I've raised in relation to domestic violence?
Ms Edwards: We've obviously been following all of the hearings, and I think we are going to follow up some issues, and the Law Council would be one we would contact to talk to about what they see as potential gaps in what we've done and what potential changes there might be. That's certainly something we would be prepared to do.
Mr Kelsey: Just to be clear, we have a whole family safety program that is continuously looking at ways in which those protections can be improved, and there are very important insights from a number of the witnesses to this inquiry which we are listening to, but that program is not just engaged with advocate communities or advocates in relation to domestic violence. It also very much focuses on issues in relation to children in care. We have a whole set of arrangements with state and territory partners where they are able to take control of children's records when they are, for example, taken into care. Just to reassure you, there's a whole program of work which is fully up and running in the agency currently, on family safety.
Senator SINGH: Let's just break it down. What happens when a mother doesn't contact you and she's fleeing family violence? You're placing the burden on her to contact you. You could imagine someone in that situation. They're going, 'Hold on a minute. I've got to contact the Australian Digital Health Agency about My Health Record.'
Ms Edwards: What normally would happen, and it hasn't happened, is the DHS—
Senator SINGH: It hasn't happened because we don't have this in place yet in a full-blown way.
Mr Kelsey: There are six million people and there are very large numbers of children in that mix. I am not suggesting for a minute that this is not a very important priority. We work closely with colleagues in the Department of Human Services, who will often, I understand, get calls in relation to suspension of what is called the IHI number, which is the number behind the My Health Record for a range of different purposes from say, a social worker supporting a mother in that circumstance or a women's refuge where a mother may have gone, and they will alert us when they have suspended that person's Medicare number, if that's the situation. We expect the workflow in that respect to come mainly through DHS, which is the established channel for first port of call in those circumstances.
Senator MARTIN: Along those themes, can you walk me through? A child's health record has the parents, the guardians, who have access to that. I would imagine that would be a form they would fill out and put their name on so it's recorded. If there's a split, I presume the guardian of that child then has the opportunity to eliminate the other partner from that record?
Mr Kelsey: That's correct.
Senator MARTIN: It would be up to them?
Mr Kelsey: Yes.
Senator MARTIN: How does the partner who has been eliminated have access to the child's record?
Mr Kelsey: They wouldn't. I think what the senator is referring to is that moment before any legal or similar action has taken place or a court has ruled that a child could be taken into custody, for example, into care. That is the pre-moment for formal action. Certainly when any kind of formal action has been taken and a partner removed from being an authorised representative, which is a legal status beyond just My Health Record, there is absolutely no possibility of them getting access to those records.
Senator MARTIN: In that short period of time you have just mentioned and Senator Singh has mentioned, is the department aware of any instances where a partner has been able to track down any part of their family through the My Health Record since its commencement in 2012?
Ms McMahon: Not since the agency has been the system operator.
Ms Edwards: I am not aware of any instance. It's also worth making the point that in the case of a woman, as it is in most cases, fleeing a violent situation and moving to a refuge or to a new address, nothing automatically changes in the My Health Record to reveal that. Addresses appear only in reasonably limited circumstances in the child's record. That would require something to be uploaded with the new address. That obviously wouldn't happen immediately. Of course we take it very seriously and we want to make it happen immediately, and of course we are doing everything that we can, but the day after or the week after someone has left, there would be nothing in that record to indicate the place the person has left to.
Mr Kelsey: We should also add that in some states and territories in Australia the position is already that in those circumstances there are no children's records uploaded into any medical record system.
Senator SINGH: Going back to your submission that you referred to, I want to know how many doctors that were in attachment A of your submission have received money from the ADHA. When I say that, it looks like they are employed as what you would call a clinical leader, is it, by the ADHA?
Mr Kelsey: We have a pool of clinicians who are called clinical reference leads, absolutely. I can't immediately tell you which ones of those are on this list.
Senator SINGH: Are those doctors employed by the ADHA?
Ms McMahon: Some, but not all. The employment arrangement, the contract, allows them to have independent views. It is for those clinical reference leads to advise us on appropriate clinical settings within their specific area of expertise and to communicate within their own peer group about the My Health Record. They are not in any way bound to agree with a certain line or opinion about the My Health Record.
Senator SINGH: Can you explain that contractual arrangement? How much are they paid? What does it include? Are there travel costs that are paid? Is it a hourly rate or a daily rate?
Mr Kelsey: I would say that it is very normal with clinicians in practice to pay them session fees for participation in public service. We operate on a similar basis to that, as would be done by any public body looking to benefit from the experience of practising clinicians in relation to service delivery or design. We can certainly provide you with the details of remuneration. It will be in line with standard session rates for clinicians in practice. We can certainly provide that to you.
Senator SINGH: I'd like to know exactly what they're being paid for, and what the contractual arrangement
is.
Mr Kelsey: Sure. Put broadly, one of the reasons why the enabling technologies in Australia and many other
countries have been slower to land in health care than in other parts of the economy, such as travel or finance, has been because of the importance of having clinicians design the services that they subsequently use. In order for us to be able to do that, we obviously need to ask many of them to support that process in different ways. Therefore they will not be necessarily practising clinical practice for, say, an afternoon a week or an afternoon a month or whatever it might be so they can join that process of co-production which is at the very heart of the values of the Australian Digital Health Agency and National Digital Health Strategy. We can certainly provide that to you. That is, in a sense, enabling those clinicians to participate by taking time out of their clinical practice and being able to backfill themselves into those roles whilst they support us with co-production and design. That's broadly what their roles are.
Senator SINGH: So the ADHA is paying doctors to sell the My Health Record?
Mr Kelsey: No.
Senator SINGH: What are you paying them for?
Mr Kelsey: We're paying them to help us design it. I'm sure you'll be familiar with some of the criticism of not just My Health Record but digital services in general—that historically they were not necessarily always designed with the clinical end user in the priority position. So user centred design is a very important part of the
way the agency approaches making sure that the national infrastructure we have the privilege of operating is absolutely fit for purpose. The way we do that, in part at least, is by enabling clinicians to have the time to help us design those services so they are fit for purpose. To do that, we backfill session times, as you would in any other situation of research, in academia or anything else, so that they're able to take that time to do so. As Bettina says, these are very senior clinical figures—for example, the president of the Pharmaceutical Society of Australia. I can assure you that they retain full independence in relation to their opinions on anything. We're just inviting them to be part of a co-design process, which is vital to the long-term sustainability of technology in health care.
Senator SINGH: That was a very long answer to a fairly kind of blunt question, I admit. I'm asking it because we're talking about a lot of money here. I've seen government tender documents that show that one particular individual was paid over $1.1 million by ADHA between 2016 and 2018.
Mr Kelsey: I can't be absolutely certain, but I think I know what you're talking about. That individual is employed more or less very nearly full time on a range of projects, and I can assure you that individual retains absolute independence in the way he would provide views on My Health Record or anything else. If the imputation is somehow that we're buying—
Senator SINGH: Paid absolutely full time to do what by ADHA?
Mr Kelsey: If it's the person I think you're referring to, that individual chairs a variety of our steering groups. One of the other big commitments I've made—I'm not trying to give long answers—is to make sure the community is at the heart of the design of our services. We have steering groups that bring together consumers, clinicians and other experts to provide guidance on how we should design services. That individual chairs a number of those steering groups, for example.
Senator SINGH: How many doctors are you paying?
Ms McMahon: We have 51 clinical reference leads advising us on our work.
Senator SINGH: So you're paying 51 doctors?
Mr Kelsey: They're not just doctors.
Ms McMahon: They're not doctors. They're a range of clinicians, nurses, practice managers, psychologists, allied health professionals. There's a whole range of healthcare providers.
Senator SINGH: Right. You're paying 51 healthcare providers, all being paid by the Australian Digital Health Agency. I presume they're all at different rates? I've just given you one that was paid $1.1 million over two years. They're not all paid $1.1 million over two years, are they?
Ms McMahon: No. If the question is about rates, I'd need to take that on notice, because they work different volumes of work. One may only work one day every couple of months, and another might be every day of the week. So I'm not sure if they're on the same rates.
Mr Kelsey: No, I can't answer that question.
Senator SINGH: Do you think it's legitimate to pass off employees or contractors as independent clinicians in your submission to this committee? Shouldn't you have disclosed that?
Mr Kelsey: There's no sense in which any of this is being—it's fully in the public domain. The identities of the clinical reference leads are all on our website.
Senator SINGH: You've called them independent clinicians.
Mr Kelsey: They are independent clinicians.
Senator SINGH: We've just been told they're a range of health professionals—nurses, doctors, all paid at different rates, some full time, some part time. Why didn't you disclose this in your submission? You've branded them as independent clinicians.
Mr Kelsey: Where does it say that?
Ms McMahon: We've described attachment A as 'clinician perspectives'.
Senator SINGH: That's even worse. 'Clinician perspectives'—seriously?
Ms McMahon: Correct. The contract does not bind the clinicians to express a certain view. They are absolutely expressing independent perspectives to us when they help us with the design work. They are not bound to have a certain view about the My Health Record or to communicate that. All of the quotes that we have in our submission were volunteered to us. No-one was strongarmed or required to provide a certain perspective.
Mr Kelsey: Do you think we should not be engaging with clinicians?
Senator SINGH: I'm asking the questions, Mr Kelsey. How did you come up with these 51 individuals to pay?
Ms McMahon: We put an approach out to the open market about 18 months ago calling for clinicians across the country who were interested in digital health and who met a number of other criteria across different professions and different parts of the country—rural, metropolitan; there were a number of factors—that would call for a diverse set of clinicians to express an interest. We reviewed those expressions of interest in line with Commonwealth procurement requirements and established contracts with 51 of them to provide advice.
Senator SINGH: Can this committee have a copy of that call-out?
Ms McMahon: Sure.
Senator SINGH: Why did you stop at 51?
Ms McMahon: I'll need to take that on notice. I presume it was because we had a number of criteria we were looking to satisfy around geography, diversity and clinical specialties. I'll need to check the report, but we would have wanted to satisfy that full set of diversity.
Senator SINGH: Is it still open?
Ms McMahon: No. From memory it closed around May 2017. We ran the procurement exercise in the second quarter of last year.
Mr Kelsey: All the payments are disclosed on AusTender as a matter of routine.
Senator SINGH: We know that, I think, 900,000 people have opted out.
Mr Kelsey: Roughly, yes.
Senator SINGH: That is a three per cent opt-out rate. You said that was below your projections of a 10 per cent opt-out rate?
Ms Edwards: I think I said that. I think I indicated that Minister Hunt had said he expected to have a participation rate in the My Health Record of at least 90 per cent, and that we're well ahead of that projection. Then Mr Kelsey provided what he had as raw numbers as at a date.
Senator SINGH: So your explanation of the rationale of the 10 per cent figure comes from the minister saying that?
Ms Edwards: I am just repeating what the minister said. We've been looking at what's been going on, and we say it's well within that. We think it's going to be a very high successful participation rate, well over 90 per cent.
Senator SINGH: Is it anywhere on the public record that you expect this 10 per cent opt-out rate?
Ms Edwards: No. We don't have a target or an expectation for the opt-out rate.
What we do want to do is make sure we make it available to every Australian unless they don't want one and to have communication far and wide so that people have that option. But we're very pleased that people will be participating in the record, because we think it'll have very great health benefits for them.
Senator SINGH: What was the opt-out rate in the trial sites?
Mr Kelleher: It was in the order of two per cent, but we can refer to some papers and give you a more accurate number if you'd like.
Senator SINGH: Okay, so two per cent. Why then did you anticipate that the national opt-out rate would be five times the opt-out rate of the trial sites?
Ms Edwards: We looked and thought the 90 per cent rate the minister said would be a fantastic participation rate. We didn't know what would happen with giving people the choice. We think it's very much closer, on current indications, to two per cent than to 10 per cent, but that was our expectation of a high participation rate, and we really think we will have it. But how many people opt out is a matter for individual people to decide.
Senator SINGH: I'm just trying to understand the rationale here. You had the two per cent for the trial sites and now you're saying it's 10 per cent.
Ms Edwards: We like to be conservative in our expectations.
Senator SINGH: Well, are you just making up this 10 per cent to justify the fact that the national opt-out rate is much worse than the trial sites?
Ms Edwards: We're not making up anything. We're running an opt-out period in which we're trying to inform all Australians of their choices. If they choose to opt out, that's their choice and that's respected. We were
expecting, all things being equal, that the participation rate would be of 90 per cent or higher, and it seems that it will be.
Senator SINGH: Okay.
CHAIR: Can I interrupt again? Senator Gichuhi has a question.
Senator GICHUHI: I'm just wondering if you are able to tell me more about the benefits of consulting with key medical professionals in the development of My Health Records and if you could illustrate that with an example.
Mr Kelsey: Yes, perhaps I could. I might come to you, Meredith, shortly. So one very big call out from the clinical community—I was at the college of GPs earlier this morning in Melbourne—was the way in which the presentation of documents in the My Health Record in some cases was historically difficult for GPs to navigate. So we launched last June a new service called MedView, which provides clinicians to access with an immediate aggregate view of a person's medications and allergies in one document. That came about through a co-design process which was led by a number of the individuals who worked with us in the way I've just described and by others, including the college, the AMA and others. MedView has been received very positively by the clinical community, and we're already seeing that it's enabling clinicians to have access to medication information, improving the safety outcomes of patients in a way that wasn't possible before. It's those kind of things.
Another example would be the development of a similar view for pathology reports, which we're working on currently. More broadly put, we have a whole process for the ongoing improvements of design in My Health Record, which is critically supported by members of the clinical community—not just our CRLs but many others as well—and we run what are called heuristic reviews so that we genuinely prioritise user-centred design, which are almost, frankly, formal scientific analyses using clinical partners to understand how they interact with information and, in particular, with My Health Record. So there's a multilayered approach to improving design and the utility of My Health Record that is all about clinicians co-producing those services. And that would be an example. Meredith, I don't know whether you wanted to add anything.
Prof. Makeham: Certainly. I think we've been highlighting the importance of clinicians being able to input into the development and design of the system. But also, quite practically speaking, once the system is out there in the real world, we very much rely on clinical input back to the agency as the system operator in terms of where we need to continue to make improvements. Obviously, the system's been running for six years. It's gone through considerable changes and improvements. All of those have been informed by clinicians in the community actually using this in a practical sense every day. Ensuring that we're able to see shared information about medicines and allergies is critical. And MedView has been described as a game-changer by some GPs out there. That means we can now see information from other settings about someone's medicines and allergies that we wouldn't have otherwise had access to.
Senator MARTIN: Last time I spoke to you, we talked about the opt-out rate being three per cent and there being 6.1 million opting in, which is about seven times the opt-out rate. Has any comparison being done internationally with the opt-out rate and how we're currently travelling in comparison?
Mr Kelsey: Yes. Austria has an electronic record system that has some similarities to My Health Record infrastructure. That is reporting an opt-out rate of around three per cent. We're just investigating the summary care record at the moment, but it's somewhere between two and three per cent. Certainly three per cent and that order is very much in line with international comparators that we're aware of.
Senator MARTIN: Okay. Thank you.
CHAIR: I've got a couple of questions myself, particularly around mental health. I expect some nervousness from some people who have some poor mental health to engage or to know about the process. Is there any outreach to particular groups—I'm also thinking beyond mental health to other people with vulnerabilities— around the process, engaging, opting out and how they can use the system?
Mr Kelsey: Yes. We have very heavily prioritised designing the communications effort to speak to particular communities that are most in need of or would most need particular engagement. So we've worked, for example, in mental health with mental Health Australia, headspace and others to make sure that we are giving the right level of support to people in that community.
Mr O'Connor: We can provide a longer list to the committee on notice.
CHAIR: Thank you. That'd be appreciated. Whether now or on notice, could you provide how the trials have gone in terms of people specifically with poor mental health who have used the system? Is that possible? If so,
what have been the results? How many opted out? Have people had difficulties? Are they concerned about stigma?
Mr Kelleher: We can take that on notice. I think it's best that the department take that one, because that trial was run in 2016. A report is published on the evaluation of the trial. We'll submit that to the committee and particularly go to the points you're raising. I would need to revisit that report just to be certain that particular groups and their interaction with the record were assessed. But we'll provide a summary for you and the full report.
Ms Edwards: It's also publicly available.
CHAIR: Okay. If you just point me in the right direction, I can go and check that. In terms of the positive outreach process, we know that with a lot of mental health programs there has to be that positive outreach. What's been done in terms of that process? I understand you've spoken to those peak organisations, but, in terms of actually then doing the outreach specifically to people with mental health issues, what positive outreach has been done there?
Mr Kelsey: Perhaps, if we take that on notice, we can give you a brief on specifically all the activities that have been undertaken, both nationally and locally. Our partners in the community, both voluntary organisations as well as primary health networks and state and territory organisations, have been organising quite literally thousands of face-to-face engagements and educational opportunities for different communities across Australia. This is supported by all the paid media that channel the information. So perhaps we could provide you with a brief on mental health in that respect.
CHAIR: That would be useful. Thank you. I had some questions around young people, but I think we dealt with that pretty significantly last session, so I think that's covered my questions. In that brief, could you cover those groups that are hard to reach?
Mr Kelsey: Yes.
CHAIR: That would be appreciated. I'm not sure if you were listening to all of the other evidence we got, but we got evidence from carers. You probably heard the evidence we got from carers about wishing to register on the people's records for the people that they're caring for—registering who their carers are, but also on carers' records, having the provision to be able to signal on those records who they're also caring for.
Ms Rishniw: We obviously read the submission from Carers and saw some of the evidence. At the moment if a carer is an authorised representative, they can be an authorised representative for a person's My Health Record where they're caring for someone who doesn't have the capacity to manage their own My Health Record. That part of the system obviously exists. In terms of identifying as a carer on their own My Health Record, there are provisions for them to load personal notes onto their My Health Record. So there's actually already a provision that allows people to make their own notes in their own My Health Record system so that functionality exists there. And we might just make sure that we reach out to Carers Australia and notify them of that.
CHAIR: So they could register on there that they're a carer? What they're worried about is also putting the name of the person on there.
Ms Rishniw: Yes. And those notes are their own notes so they aren't ever disclosed. They sit and they are controlled, keep the privacy—
CHAIR: Nobody else can—
Ms Rishniw: That's exactly right.
CHAIR: Is that automatic? Is that default setting automatic?
Ms Rishniw: That is the default setting, yes.
CHAIR: Would that break the glass? See, what they're worried about is if there's a crisis, if something happens and they access the records.
Mr Kelsey: One of the reasons why, certainly initially, many people did opt in to My Health Records was because there is a facility to record the name, address and contact details of a person who should be contacted in an emergency on the My Health Record, which is visible to clinicians with or without breaking glass.
CHAIR: But what they were worried about was the person they're caring for not receiving the care they need, particularly if it's very important intensive care. So what they're worried about is if there may be somebody at home who, in fact, needs attention, and they're not there to give it. I'm worried, when you say 'Nobody else can see it,' that they actually want people to be able to see it.
Mr Kelsey: Certainly when I listened to the evidence, my response was that obviously we have engaged very closely with the carers association, but it clearly is something we need to talk to them about, because there are ways in which we can improve the visibility of some of those items. Clearly that's absolutely within scope of the design of the service. So that's a good area for us.
Ms Edwards: To be clear, I think you're saying that people want to say, 'If I'm taken to hospital unconscious, my cared-for person needs somebody to check that they are okay.'
CHAIR: That is exactly the point I am making.
Mr Kelsey: We certainly heard that clearly, so we'll pick that up.
CHAIR: This question is maybe too complicated so you may need to take it on notice. We talked about advanced care plans and having them there. I'm going back to, specifically, poor mental health. In terms of outreach, there are care plans for when people are unwell. They're not necessarily advanced care plans when we're talking about the more usual context for an older person, for example, or talking about where people are developing plans for when they are unwell. Can they be uploaded? Can they also be added?
Ms McMahon: I think there are two types of plans. One is the end-of-life care plans, and they are in the My Health Record, and we talked about that separately. The other thing I think you're talking about is shared-care plans, where someone maybe with a chronic disease has a number of healthcare providers participating in a coordinated care plan. Those types of plans are not currently in the My Health Record. There is the ability to upload one attached to what's called an event summary but it's not typically used for that. There's usually other software in the market used for shared-care planning which is a more collaborative. It's a document that multiple clinicians input into and maintain over time, which is slightly different to the way My Health Record works.
CHAIR: I appreciated hearing that, but this is slightly different. This is when I am unwell and I have come up with a plan about my care, because I may have a cognitive impairment when I'm unwell or I've realised that I can't make decisions, so there's an agreement that somebody else can then make those decisions in a plan that was developed when I was well. So it's a care plan for when I'm unwell, which is slightly different to the shared care plan and different in terms of who's making decisions.
Ms McMahon: I think you're talking about episodic—
CHAIR: Yes.
Ms McMahon: The event summary does allow for a document to be uploaded. You could allow it to be in the My Health Record, if that makes sense.
Mr Kelsey: Those event summaries are visible through clinical software, as well as through the actual portal of My Health Record. We are aware of a number of specialist clinicians, for example, who use the shared events summary in that kind of way, so that would be a facility that people could use for that purpose.
CHAIR: Thank you.
Ms McMahon: Senator, I have some more information about the Clinical Reference Lead rates that I can provide now, rather than on notice, if you like. The Clinical Reference Leads have hourly and daily payment rates in consideration of Remuneration Tribunal Determination 2017/10, Remuneration and Allowances for Holders of Part-time Public Office, and any travel-related expenses comply with the agency's travel policy. It allows for economy-class travel. I'll also send a link to the secretariat for that public call-out, which provides details of that rem tribunal determination and the compliance with that.
Senator SINGH: That's what you're asking them to do in the call-out?
Mr Kelsey: Yes, in the call-out.
Ms McMahon: Yes, I'll provide the link which specifies the requirements and also has that rem tribunal information about the rates.
Senator SINGH: Okay. I want to go back to this: the trial sites were two per cent, currently Australia is at three per cent, but your expectation has been 10 per cent. Why was that?
Ms Edwards: The three per cent that we talked about the other day relates to a point in time through the internet channels. We noted the other day that it doesn't include everything. It was really to give you a progress report, just to make sure that's clear. We don't know where we're going to end up, because there's a period left still in the opt-out time. There are all those paper forms that we've given for people who need them in remote areas. So the participation rate of 90 per cent was a conservative expectation of where we would get to, which is obviously the vast majority of the Australian population. As to where we're up to at the moment, given the point in time, the
figures that Mr Kelsey provided the other day show that we're well within that band. Where exactly we'll land remains to be seen.
Senator SINGH: Can you point to anywhere before the opt-out period where you said 10 per cent?
Ms Edwards: I'm not aware of anything, but we can have a check. But it's not a target that we're going towards. As I mentioned—
Senator SINGH: But I'm asking that specific question.
Ms Edwards: But whether we talked about 10 per cent—
Senator SINGH: You can take it on notice if you don't know.
Ms Edwards: We can take it on notice. I'm not aware of any other time. But 90 per cent of the population is a great place to start to have a record for everyone. That's what we're expecting at least.
Senator SINGH: Do you have an update on the 900,000, or three per cent?
Ms Edwards: I don't. Do you?
Mr Kelsey: No.
Senator SINGH: When the My Health Record was initially proposed, the government promised no-one would be denied access to Medicare services or benefits if they decided not to participate. Why, then, is the government making participation in its Health Care Homes trials conditional on having a My Health Record?
Ms Edwards: It is totally the case that nobody would not get Medicare benefits because of My Health Record—that's absolutely the case. In relation to Health Care Homes, that's a voluntary program that people who fit into various criteria have been part of. It's a trial. Nobody has to do it. Nobody is deprived of care if they decide not to do it.
Senator SINGH: But it's conditional on having a My Health Record?
Ms Edwards: 'Conditional' is not the way I'd express it. There are a number of criteria—people have to have a certain level of disease, they need to be attending certain practices that are participating, they need to fit certain criteria and fit into tiers. One of the things that people who can, if they wish to be part of the Health Care Homes trial, is have a My Health Record, because it helps to look at the whole mechanism. But it's a trial of a particular type of care that we're doing. It's one of the things that's in there. If you didn't want to have a My Health Record, then you wouldn't be part of the trial.
Senator SINGH: Who contacted the Parliamentary Librarian about the My Health record report? Was it the minister or anyone in the minister's office that instructed the department or the agency to make that approach?
Ms Rishniw: My understanding is that the secretary of the Department of Health had a discussion with the Parliamentary Librarian to clarify some points and provide further information on the My Health record and its operation. We will need to take on notice the specifics of any contact.
Senator SINGH: Right, including the question I just asked about the minister and the minister's office.
Ms Rishniw: Certainly.
Senator SINGH: Do you have anything more to add about the librarian?
Ms Rishniw: No.
Senator SINGH: Just that it was the secretary who contacted the librarian.
Ms Rishniw: That's my understanding. If we can take it on notice, we will clarify.
Senator SINGH: Mr Kelsey, in July you penned a long letter criticising the reporting of News Corp's Sue Dunlevy. That letter was published on the ADHA website but was later taken down. Why was that?
Mr Kelsey: Ms Dunlevy reported inaccurately a number of issues in relation to the My Health record. One of the responsibilities that the agency has and has had during this process is to ensure that people are informed accurately of the way in which the My Health record functions. We have been in touch with News Corp over the previous couple of years and have had a series of corrections published in relation to articles that have been published by Ms Dunlevy. On this occasion we published the facts in relation to the article she published on I think 14 July. We then had a letter from News Corp raising—
Senator SINGH: Yes, I know all that. I'm asking why you took it off the website.
Mr Kelsey: In response to the letter from News Corp, we then in good faith took down the statement that we had put up there. We then sought legal advice and subsequently wrote to News Corp to clarify that the statement
was accurate and that we have subsequently built the points that were in that statement into other parts of the frequently asked questions part of our website.
Senator SINGH: Have you sought any other journalist change or removed any critical coverage, directly or indirectly?
Mr Kelsey: No. We welcome the debate that has been going on in Australia. We think it's incredibly important.
Senator SINGH: So that was no?
Mr Kelsey: We have been active in ensuring that, where misunderstandings or inaccurate reporting has taken place—and that's not about trying to diminish the dialogue—
Senator SINGH: So you have then?
Mr Kelsey: We have been in touch with journalists where things have been misunderstood.
Senator SINGH: Can you provide some examples? What were those factual objections to the reporting?
Mr Kelsey: Yes. I'm very happy to take that on notice, if that is all right. I can't immediately give you that, but we can certainly provide you on notice with examples where we have sought correction of misunderstandings or inaccuracies in reporter coverage.
Senator SINGH: Okay. Take that on notice. Can you guarantee Australians that they will never be required to have a My Health record to access Medicare, the PBS, public hospital care, health insurance subsidies or other taxpayer health benefits?
Ms Edwards: I can guarantee that there's no such requirement, there's no such proposal to have any such requirement and there's no development of a proposal to have any such requirement and that I, nor my colleagues as far as I'm aware, have never been privy to any discussion about any such requirement, any suggestion of any such requirement or any indication that there might be such a requirement from any of my colleagues or anybody I have spoken to at any time.
CHAIR: Senator Singh, I'm going to have to wind this up. We have another meeting after this one.
Senator SINGH: Okay.
CHAIR: What's the timing on the briefing that you've committed to providing us? Mr Kelsey: On hard to reach and hard to service communities, quickly. Monday? CHAIR: That would be fantastic.
Ms Rishniw: When we appeared on Monday you asked to get some detail on the consultations undertaken for the secondary use framework. We can table that with the secretariat today.
CHAIR: Brilliant, thank you very much. Thank you very much for your evidence and for coming again. It's very much appreciated. It would be appreciated if you could get us that information as soon as practicable. Thank you. I thank Hansard, the secretariat and my colleagues.
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