Pádraig Rice (Cork South-Central, Social Democrats)
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The purpose of this meeting is to consider Committee Stage of the Health Information Bill 2024. The aim behind the Bill is to improve the use of health information, ensure that the right information is available in the right place and at the right time and ensure the best care of and treatment for patients. The Bill provides for a duty to share held information for patients' care and treatment, the establishment of digital health records for all patients in Ireland, greater access for patients to their health information, greater protections around health information for primary use and better health information for the HSE for patient-interest purposes. It also underpins Ireland's EU obligations. I welcome the Minister for Health, Deputy Jennifer Carroll MacNeill, who is accompanied by officials from her Department this morning.

Members are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that may be regarded as damaging to the good name of the person or entity. Therefore, if members' statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks and it is imperative that they comply with any such direction.

A total of 74 amendments have been tabled, and the grouping list has been provided to members. We will consider each amendment in turn.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 1:

In page 6, line 16, to delete “Digital Health Record” and substitute “Electronic Health Record”.

There are quite a number of amendments in this group. They are: amendments Nos. 1, 6 to 10, inclusive, 12, 14 to 17, inclusive, 19, 21 to 26, inclusive, 28, 29, 32 to 39, inclusive, 43, 45 to 49, inclusive, 52 to 54, inclusive, 68, 69 and 71 to 74, inclusive. They are deal with the same thing, namely the deletion of the term "Digital Health Record" and its replacement with the term "Electronic Health Record". The purpose of this is to ensure that the terminology in the Bill is aligned with the language used in the European Health Data Space, EHDS, regulation, which came into force in each member state at the end of March. The aim behind the regulation is to establish a common framework for the use and exchange of electronic health data across the EU. The regulation will empower each of us to access, control and share electronic health information, both within Ireland and across borders, in the context of direct care.

The purpose of the amendments is simply to make that naming change across the various provisions of the Bill. I can continue if Deputies wish but that is the purpose of this series of amendments.

Pádraig Rice (Cork South-Central, Social Democrats)
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I thank the Minister. As she noted, this amendment is grouped with many others.

David Cullinane (Waterford, Sinn Fein)
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Amendment No. 1 is grouped with 14 or 15 other amendments. I can see what the amendments do. What is the purpose of replacing the term “Digital Health Record” with “Electronic Health Record”?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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It is to simply align the terminology in the Bill with the language used in the EHDS regulation. We are trying to establish a European-wide ability to share data in a consistent way. This simple terminological change will enable us to do that and to avoid purposely create legislation that is linguistically at odds with the rest of Europe.

David Cullinane (Waterford, Sinn Fein)
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The last time we had a debate on this issue, it was in respect of the heads of Bill. Some of the same officials are involved again today. We had very lengthy discussions on the lack of progress in this area. Two years have passed. The question is, what progress has been made since? There was a lengthy discussion at that time on the different types of records involved. I refer to summary records, shared care records and then electronic health records. My understanding is that we are still at the point of working towards summary care records. Is that the case, and how far have we progressed in that regard?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will ask Mr. Tierney, who has been working throughout the period in question, to address that.

Mr. Derek Tierney:

Since we met last, we have mobilised what it known locally as a national shared care record programme, which is about developing shared care records across care settings. For example, if a person was to seek assistance in an accident and emergency department, a shared care record would provide the staff involved with access to GP records and, where they exist, pharmacy and hospital records. This would mean that for at least the person's first intervention, those providing care could see a minimal level of information to help with diagnosis or intervention. The next phase-----

David Cullinane (Waterford, Sinn Fein)
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Have we moved beyond summary care records to shared care records for everybody?

Mr. Derek Tierney:

Yes. They are one and the same, really. In practical terms, they are one and the same thing. That shared care record programme is now mobilised. We have appointed a vendor. Work is under way. By the end of this year, our ambition is to deploy that. Our first deployment in the Deputy's area in Waterford and the surrounding community will involve launching a shared care record pilot phase deployment. This will then be widened on a national basis in 2026 and 2027. We have made great progress.

David Cullinane (Waterford, Sinn Fein)
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I want to tease out a few issues, and other members will want to come in as well. Obviously, that is good if we want to get to that space, but we are still a couple of years away from getting to the shared care record space. What is the key difference between that and a full electronic health record?

Mr. Derek Tierney:

If we think about a shared care record, the main differentiator is that it is a longitudinal record that starts to connect fragmented records across the system in order to provide a unified view to those who are receiving care and those who are providing it. What we call an enterprise electronic health record, in the first instance, is to provide that level of functionality. Second, at a much deeper level, it is effectively about automating the patient journey in order that from the time a person receives his or her first intervention, the care plan is being automated and planned for at the next level or stage. Let us say that on the basis that we have a full enterprise electronic health record in situ when a person arrives at a GP or even into an accident and emergency department, his or her next steps are already being preplanned. His or her labs are being ordered-----

David Cullinane (Waterford, Sinn Fein)
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We are told that the children's hospital will have full electronic health records.

Mr. Derek Tierney:

Wall-to-wall digital care.

David Cullinane (Waterford, Sinn Fein)
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What is the difference between what will go live in the children's hospital and the summary care records that will be used across the remainder of the health service? Will that involve integration with GPs and community care facilities or will it just be an EQ system?

Mr. Derek Tierney:

The shared care record definitely involves integration across all care settings where a person's health information exists. In other words, information relating to GPs, pharmacies and hospitals. There is little data being collected in the community because it is predominantly a paper-based system. We have a plan to create some capability in community care. If we think about it, the electronic health record system in the children's hospital is a full digital record from the time a child is admitted for care for paediatric services until he or she is discharged, whatever his or her condition or need is. It is very deep, and it automates his or her plan. That is the difference. If I was talking about our ambition to implement an electronic health record at national level, I would ask the Deputy to think about the children's hospital but on a national level.

David Cullinane (Waterford, Sinn Fein)
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I have a final question. In the North, two of the health trusts - the western and southern trusts - went live with electronic health systems in May. Has Mr. Tierney engaged with colleagues in the North? Has he had a look at their systems? I think it is the Epic system that is in use there.

Mr. Derek Tierney:

It is. We are very fortunate because if we think about it from the perspective of the children's hospital, we must think about that ease of integration between what we are deploying there and paediatric services in the North. Then, we start opening up the possibilities of all-island paediatric care. That will be the game-changer. That is the opportunity.

Colm Burke (Cork North-Central, Fine Gael)
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With regard to records that are already in place, some, although not all, of the maternity units have computerised records. The first four involved began doing this five years ago. Can the electronic record relating to a baby born in a maternity units be passed on if that child is subsequently brought to the children's hospital 12 months later? Will such records be capable of being passed on in computerised form rather than by means of a paper file?

Mr. Derek Tierney:

At a minimum, a shared care record will allow minimum access to health information wherever it is in the system. If the question is about whether we can we pick up a baby's electronic record and ingest it into the system within the children's hospital, in theory, yes, we can. However, we have to work through matters in terms of interoperability. Going back the first part of the Deputy's question, the committee will be aware that Limerick maternity unit went live on the maternity HR system just three weeks ago. That is a major milestone because it sets us on a path to get 70% of all births on a maternity HR system. That is great news.

Colm Burke (Cork North-Central, Fine Gael)
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There are 19 maternity units. How many operating electronic systems?

Mr. Derek Tierney:

By the end of the year, all the larger sites will be in our maternity hospital deployment. This means that 70% of all births will be captured on an electronic health record system by that time. We will then have to figure out how we pick up the satellite units in terms of how we feed in information from them. We are working through that.

Colm Burke (Cork North-Central, Fine Gael)
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Electronic records very much relate to mothers. I am asking whether electronic records is kept in respect of babies following birth.

Mr. Derek Tierney:

Mother and child.

Colm Burke (Cork North-Central, Fine Gael)
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Therefore-----

Mr. Derek Tierney:

It is a care model that is digitised for the care of the mother and the child, following birth.

Colm Burke (Cork North-Central, Fine Gael)
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The other issue I want to ask about is with regard to the number of systems. In Denmark, they were down to 25 systems about four years ago. They are now working towards having five systems. My understanding is that between all the hospitals, GPs and pharmacies, we had something like 1,700 different systems. What is the number now?

Mr. Derek Tierney:

I will tell the Deputy where we would like to get to. We would like to get down to one system nationally, which is that relating to our enterprise electronic health record. We have developed a business case. We are engaging with our colleagues in the Department of public expenditure and reform for support for investment to start the programme in that regard. The matter is under active consideration.

We have thousands of discrete independent systems throughout the health service. The challenge is to connect them. The way to do that is to start replacing them over time with a shared care record that is longitudinal and that takes information out of those hundreds of systems to provide a unified view and, in time, replace this with an enterprise electronic health record. The goal is to get down to one system. In fairness to the authorities in Denmark, they have been at this for 30 years. We have only really started.

Colm Burke (Cork North-Central, Fine Gael)
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If we go back to the maternity services, on the basis that when a child is born and an electronic record is being kept from the start, the question is about the priority of getting every maternity unit to operate an electronic system. Mr. Tierney referred to a figure of 70%, but it is about moving forward from there. The issue is the timescale we were talking about whereby if we have 70% that are electronic and 30% that are not, this will cause its own problems even if they are transferred.

There is another issue I want to raise. I was speaking to a general doctor recently in one of the largest hospitals in Dublin. He informed me that he spends 50% of his day chasing down X-rays or scans for patients and trying to get them on to their files. It is about getting all those records on to a patient's file once the scan or X-ray has been performed. How far along are we in trying to achieve that goal?

Mr. Derek Tierney:

The national shared care record will link into what we call the national integrated medical imaging system, NIMIS, which is our national imaging database. GPs will have immediate access to a person's images and diagnostics once we deploy our national shared care record.

Going back to the Deputy's previous question about how long it takes to roll out an electronic health record, as Deputy Cullinane pointed out, the North has been successful in this regard, but that was on the basis of an eight-year programme. These things take time, particularly as we have to standardise work practices and workflows and then digitise the information using an electronic technology platform. We are under no illusion; this takes time and effort and commensurate funding That is where we are at the moment.

Pádraig Rice (Cork South-Central, Social Democrats)
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Deputy Daly is next. We will then move to Deputy Sherlock.

Martin Daly (Roscommon-Galway, Fianna Fail)
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What is the name of the system that will be used in the new children's hospital?

Mr. Derek Tierney:

It is an electronic health record which is wall to wall-----

Martin Daly (Roscommon-Galway, Fianna Fail)
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Is there a name for this system, the operating system?

Mr. Derek Tierney:

I think they called it Project Ogham. We know who the vendor is and I am not sure if I want to start naming vendors in the committee. That would be unfair. We are in procurement for a wider-----

Martin Daly (Roscommon-Galway, Fianna Fail)
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The Department is in procurement and cannot say who the vendor is. Will the record of somebody who reaches 16 or 18 years of age and needs to go to St. James's Hospital be compatible with its system?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That is the ultimate goal and what we are trying to get to. This is going to be a staged process over time. As we said, we started with the maternity hospitals, the children's hospital and the national rehabilitation hospital have this measure. This is about making this the complete system for all healthcare interactions. The whole purpose is to get to the point where a person’s care is available to whichever provider he or she turns up to, whether in a scheduled way such as transitioning from paediatric to adult services or in a more organic way, such as when a person has had a trauma or an accident and turns up at a different hospital. The same record is individualised or personalised to that person and should be available. That is going to take us some time, not only to integrate the different systems between acute, paediatric, adult and community, but on a regional basis and in terms of how we stage that securely, effectively and reasonably throughout not only the different elements of the healthcare system, but the regions of it, along how we stage this. What the Deputy is describing is our goal.

Martin Daly (Roscommon-Galway, Fianna Fail)
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This is no reflection on the Minister, but about ten years ago I sat in the Department of Health and we talked about all of this and very little has moved. If someone is in the children's hospital and reaches the age where he or she has to go to the adult hospital, are those systems integrated? That is my first question.

I understand there are sensitivities around procurement but there are only one or two big systems around that we are talking about. My second question is again on IT. We mentioned general practitioners. GPs have been 95% computerised for the past 25 years, since the year 2000. We know that from the chronic disease management programme. In order to participate in that programme, one had to be computerised. There is a 95% uptake of GPs. In fact, we were talking to 40 GPs who operating an old system. There is a great dependence on one or two companies. One company dominates the GP space. There is great concern that if that company for any reason - I am not suggesting it will - became vulnerable financially or otherwise, or was sold out of the State, this whole network of the only part of the health service that is fully computerised and paperless would collapse. This is a question not an opinion but would it not be a worthwhile project to look into the HSE and Department taking over the national GP, and integrating it with the rest of the health service?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will start and ask Mr. Tierney to come in. It is very important, not only as we go through this procurement process but the many procurement processes I hope we will be in together over the next number of years, that we manage those processes from the perspective of maximising the advantage of the State, which is all of our shared interest. We will need to be careful on that. I ask Mr. Tierney to give more information on some of the Deputy’s other questions.

Mr. Derek Tierney:

I take the Deputy’s first question. The scenario he is presenting is a child or patient in CHI receiving care, and after reaching the age of 18, he or she needs to receive acute care in St. James's Hospital. for example. I will answer that in two ways. The purpose of this Bill is to ensure that the patient's data is accessible and follows him or her on his or her care journey. We are here today to make sure we at least establish a legal underpinning, obligation and duty to share, to allow us live through that duty of care. At a practical, technical level what I would say is that the national shared care record in the first instance allows both the patient and the caregiver in St. James's to have access to a minimum level of information from the CHI system to understand what the patient need is and what care has been received to date.

Martin Daly (Roscommon-Galway, Fianna Fail)
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There will not be an integrated record.

Mr. Derek Tierney:

As the Minister said, in time-----

Martin Daly (Roscommon-Galway, Fianna Fail)
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That is the answer

Mr. Derek Tierney:

-----we want to get to a national EHR. I will deal with the GP question. It is a very interesting scenario the Deputy presents and is one on my mind as we go into procurement for an enterprise EHR. The Deputy is right that there are four systems in the GP community but one vendor has dominance. That is in my mind and is something we are considering in future options but we are in a live procurement and I do not want to go any further.

Martin Daly (Roscommon-Galway, Fianna Fail)
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I understand. At least it is on the radar.

Mr. Derek Tierney:

Absolutely. The liability is-----

Martin Daly (Roscommon-Galway, Fianna Fail)
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There is critical exposure there.

Mr. Derek Tierney:

Correct. There is.

Marie Sherlock (Dublin Central, Labour)
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It is great we are having this committee meeting today. I very much welcome the Bill. I wish to pick up on some of those questions about the integration with primary care and, in particular, GP records. Is there a view it will be just GMS patients who will be captured by this system, or will it be all GP patients? By extension, I am thinking of dental services and the integration of public health records and records held by private hospitals. What is the shareability? If I turn up at a private hospital or dental practice in the morning, will that accessibility be there whenever the system is fully operational?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The intention is that it will be for all patients and GPs and not just GMS. The information we have is that it will be richer for GMS patients in the first instance. I ask Mr. O'Connor to comment on the legal piece and Mr. Tierney on the technical.

Mr. Muiris O'Connor:

The whole Bill is about supporting integrated care and the transitions from community to acute and to GPs. Part 3 of the Bill sets out the categories of information we commit to providing for each citizen. The digitalisation is a huge detail of the enterprise system and will take many years. The Bill facilitates the interoperability of data from different systems to consolidate information into summary care records for all citizens. We believe that will deliver value in a much nearer term. The overall digitalisation is a vital investment in the medium to longer term.

Mr. Derek Tierney:

To add to that, the Bill does not distinguish between public or private. A patient is a patient and a healthcare provider as a healthcare provider. At a technical level, when I look at our shared care record, all information is up for grabs. If there is information a GP system needed for a person's care, we do not distinguish between private or public. We are giving effect to the Bill and how we get access to data, whether it is a publicly or privately provided service. I expect the private sector will be knocking on my door looking for publicly held information, particularly diagnostics and images, so it will cut both ways.

Marie Sherlock (Dublin Central, Labour)
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Ultimately, the software provider of these systems will be a private company, not something developed within the HSE or the Department of Health itself.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That is not the intention. Given the scale of what is necessary from a data management perspective, cyber security perspective or integration perspective, we are looking at data providers. It would not be appropriate for the Department of Health or HSE, which are not IT companies but health service and policy delivery vehicles. That is not their function. I ask Mr. Tierney to elaborate on it.

Mr. Derek Tierney:

The Deputy is right. We will not be developing code from scratch. If the Deputy looks at our national shared care record, we have procured a joint venture - effectively a company that delivered OneLondon. It is a joint venture between a technology provider and an integrator and there will be a configuration around what we need in terms of what information or records we want to get access to. We are not coding from scratch, from first principles. We are buying in a proven, reliable technology stack that is delivered in another jurisdiction and proven its effect.

Marie Sherlock (Dublin Central, Labour)
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Our witnesses might explain what Community Connect is. We have had some correspondence alleging that this project has not gone to tender and the HSE is developing its own in-house framework. Could the witnesses explain what it is and clarify it for us? Whatever we have heard, the witnesses have been alerted to those concerns as well.

Mr. Derek Tierney:

If I take it back to where we currently are, we have systems and data that are fragmented and isolated. Where we have systems, it is great but in our community setting, we are predominantly a paper-based system. Our records are paper and are manually derived.

Marie Sherlock (Dublin Central, Labour)
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When Mr. Tierney says community now, he is talking about CDNTs, primary care-----

Mr. Derek Tierney:

Correct. I would say the wider primary care settings. It is predominantly paper based and we do not have any maturity around digital systems, digital technology or data collection systems in our community settings. Therefore, there is a gap. While our longer term plan is to roll out a national electronic health record, we recognise there is a need to deliver some capability to the community in the interim. This is what community connect is. It is a solution to bridge a gap in time until we get to the final state, which is an enterprise national electronic health system. We have now commenced a programme where we are using an existing framework to start to deploy an existing solution into the community, into mental health in the first instance, widening to palliative care and then widening it again to wider community services. The vendor is currently delivering a solution for us. I would say it is a mid-tier vendor and we are exploiting that framework to roll that out into the community, to bridge a gap and fill a need they have.

We do not have the luxury to be able to pick and choose. We are not fully funded to make decisions for everything. We have to standardise our approach and we have to exploit existing frameworks and technology where we can. Part of our job is to understand what we have, whether it delivers capability and how we can use that within the system.

Marie Sherlock (Dublin Central, Labour)
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Does the Department of Health have any concerns about the procurement process or lack thereof?

Mr. Derek Tierney:

My job is to push us away from paper and enable us with digital capability. That is where we have to go. None of us has the luxury to pick and choose.

Marie Sherlock (Dublin Central, Labour)
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I am just clarifying that the Department of Health does not have any procurement concerns as regards community connect or projects such as that.

Mr. Derek Tierney:

That is correct.

Pádraig Rice (Cork South-Central, Social Democrats)
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Deputy Cullinane indicated he wanted to come back in. I am conscious that we are still on amendment No. 1 of 74. I want to get through the others and we have two hours left. I ask him to be brief.

David Cullinane (Waterford, Sinn Fein)
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We have loads of time. I have three quick questions. When we look at the scale of what needs to be done even to get to the shared care records, we have multiple service providers across acute, primary and community. I do not underestimate the challenge. We have multiple systems. Am I right in saying that initially at least we are looking at interoperability of multiple systems? Following on from that, has the Department met any challenges or resistance in getting to that space?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will ask Mr. Tierney to begin and I might come in after that.

Mr. Derek Tierney:

I will try to set out what the shared care record is from a technology perspective. If we think about it, it is a black box and all it is doing is connecting into those existing systems the Deputy talked about. It is not about forcing systems to talk to each other. It is dropping down into each of those systems, pulling out the relevant information and connecting it so that patients and healthcare providers are seeing that combined unified record as it exists within the system in separate parts.

David Cullinane (Waterford, Sinn Fein)
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The reason I asked the question is that when we look at other European countries and indeed the North - we just talked about that - they have single system of electronic records with full bells and whistles. That is a single system, but we are not talking about that. If our objective is to move to full electronic health records, would that require a single system?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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It would. That is what we are ultimately getting to, but this has to be a transition. There is no other practical way of doing it. I very much hope we will be having this conversation in a number of years from now and that we are talking about a single system as other countries in Europe have. While not all have managed to do it, those that have managed to do it have begun this journey a little earlier than us and we want to end up in that space. To transition from what we currently have-----

David Cullinane (Waterford, Sinn Fein)
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I appreciate that and the scale of it. I fully understand that. Mr. Tierney and I have talked previously in private discussions about the cost of all of this. I know the system in the North cost over €1 billion and other European countries have spent a lot of money. What is the budget over the coming years even to get us to a point of having a shared care record? What would be required to get to a point where we would have the full electronic system across the entire health service? How much money are we talking about?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will ask Mr. Tierney to take that. However, we need to be aware we are in a live procurement process.

David Cullinane (Waterford, Sinn Fein)
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Am I right in saying it is very expensive and would require very significant capital expenditure?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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It would require very significant capital expenditure. We are in a live procurement process. We do, of course, have a budget at present of about €190 million which is keeping things going at the moment, maintaining our cyber security, and Mr. Tierney can provide more detail on that. We are in a live procurement process and we are talking about very significant capital investment.

David Cullinane (Waterford, Sinn Fein)
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Is that for the shared care record?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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It is for the whole thing, including the planning of it. To get to the ultimate electronic health record, the unified system, we are talking about very significant capital expenditure.

David Cullinane (Waterford, Sinn Fein)
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However, current procurement is not for a single system, is it? It is for the-----

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Nevertheless we are in a procurement process now. We are making a business case at present and we are also in NDP discussions. This is a public session, of course. I am very aware that vendors might have an interest in it. We need to manage our conversation on finances carefully in the interest of the State.

David Cullinane (Waterford, Sinn Fein)
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I have one final question and then perhaps Mr. Tierney can come back on both. Was there any resistance from any of the voluntary hospitals? That was something that came up previously. Obviously, they have their own boards and have their own systems. Are we getting buy-in from across the entire health service?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I would like Mr. Tierney to come in on the Deputy's earlier questions but I would also like Mr. O'Connor to give his perspective on the co-operation of the voluntary hospitals with, for example, the productivity dashboard. The purpose of Bill is to make sure there is no ambiguity regarding the sharing of information about the patient. That applies to all things. It is necessary that the voluntary hospitals implement this. For example, the integrated financial management system, IFMS, is already an essential part in making non-pay savings. I expect to see the voluntary hospitals do that enthusiastically where that has not yet been done. I would expect them to co-operate with this as well because they are being paid for by the State.

David Cullinane (Waterford, Sinn Fein)
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The question is: are they doing it?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I might ask Mr. O'Connor to speak about the productivity dashboard, which might be helpful.

Mr. Muiris O'Connor:

Part of the fragmentation in our health information landscape has arisen from the public, private, voluntary nature of the Irish system. There was not always an enthusiastic willingness to share data between voluntary and public, and between private and public. There were instances where voluntary hospitals entered into data sharing agreements with the NTPF which required them not to share that data with the Department of Health. We have ironed out those issues. I can detect and see very considerable progress through a data access group.

The section 38 hospitals, as a group, have engaged with the complete refreshment of data sharing arrangements with the HSE. They recognise the importance of connected health. They recognise the European move to centre it on citizens' rights to have their health information connected, irrespective of where they get the data. Although not yet enacted, the Bill is having a very positive influence on the commitment to share. It is vital that we operate as a coherent system. The sharing of care records from different sources, as we have spoken about, is now supported in legislation. There is a clear legal basis for the sharing.

There are much stronger powers for the HSE to require data, to specify the categories of information it wants and crucially - I think the Deputy was picking up on this - the standards to support interoperability. The beauty of it is that the interoperability we seek will not just unify health information in a connectable way here in Ireland, but will have it connected across the wider 27 member states of the EU and associated countries that plug in. Therefore, we can really transform this quickly from what I would regard as very poor behaviours at times around data sharing. I am confident that we are really getting places now. The productivity dashboard that the Minister spoke about took about 18 months of work, trying to renegotiate data sharing and trying to secure the reporting in sensible formats to bring that visibility to the productivity and performance in health and social care so we have a unified system.

We are engaging with the private hospitals. They have not all been co-operative but we are working with them to ensure we get a citizen-centred approach, which while rather agnostic to the site in which the healthcare is delivered, captures the data arising.

Pádraig Rice (Cork South-Central, Social Democrats)
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I call Deputy Roche, who has not spoken yet, followed briefly by Deputy Burke.

Peter Roche (Galway East, Fine Gael)
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I wish the Minister and her officials a good morning. I am excited about the prospect of this. It is a move in the right direction. We are in the digital age now and whether we like it or not, it is fair to suggest or for me to think it is worth bringing all the systems together and channelling or filtering that information about one's file such that wherever an accident or emergency might occur, at least that information can be tapped into. Easy access means early intervention and that primarily should be where we are trying to get to.

I had a number of questions and have been saved the task of asking them because previous speakers have posed them so I am not going to go back over that. I anticipate resistance, maybe, by some to engaging in this process. Sometimes people are afraid the information might be used for the wrong reason or that outside parties might have access to that very confidential and private information. Does the Minister anticipate resistance in that regard due to fear of the information getting shared or will it be managed such that only those who have a need to access it can get hold of it?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Does the Deputy mean resistance or reluctance on the part of individuals or hospitals?

Peter Roche (Galway East, Fine Gael)
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"Reluctance" is probably a better word. It could be from hospitals or individuals. Of course, if individuals resist, the chances are they are cutting off their nose to spite their face.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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We are very respectful of the personal rights of individuals and how their data is held and managed. There is a need to hold data electronically for the purposes of providing care, but there are certain guardrails put around who may access that data and on what basis. At the next level when we are looking at how we share and consider data on a more collective level, for health research for example, clearly all that is anonymised and is at a completely different level. In the same way everyone benefits from the changes made to organ donation on the basis it might be the Deputy or it might be me but we all benefit collectively, we all benefit from sharing information not just in Ireland but with Europe in a completely anonymised way for health research purposes and for innovation purposes.

From the perspective of hospitals, I am afraid resistance really is not option. Resistance is futile, in the words of the Borg. To be clear, the State pays for hospital care and it does not matter whether it is a HSE hospital or a section 38 one. The State is the entity paying and all of us are the people who are responsible for that. It is like being slow on integrated financial management systems. It is really not acceptable. This is what we are doing. We are providing a legal basis for how that may be done. There should be no ambiguity about this. This is what is happening.

Peter Roche (Galway East, Fine Gael)
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Excellent. What about timelines? The Minister mentioned how long it took Denmark. When does she anticipate this will be live or will be enacted?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I might ask Mr. Tierney and Mr. O'Connor to come in on that.

Mr. Derek Tierney:

My deadline for the Minister is to have the shared care record deployed in a first pilot by the end of this year. That is a very aggressive timeline.

Peter Roche (Galway East, Fine Gael)
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It is.

Mr. Derek Tierney:

We had to negotiate hard with the vendor to get there, but that is the commitment. We want to deploy it in an integrated setting between Waterford general hospital and the wider community, get it to work there as a proof of delivery and then widen it on a regional and national basis. In parallel, to go back to Deputy Cullinane's question, we have developed a business case for the longer term system of an enterprise electronic health record. We are engaging with the Department of public expenditure and reform in the context of the NDP and funding levels and we have commenced a procurement engagement with the market. That is where we are. I am very focused on doing this.

Peter Roche (Galway East, Fine Gael)
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All I will say in conclusion is well done and the best of luck with it. I am excited about the prospect, I must admit.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I might ask Mr. O'Connor to answer the earlier question.

Mr. Muiris O'Connor:

On the assurances patients have, the Bill provides a clear assurance for them to access their information to ensure that for the purpose of direct care, only health professionals with a direct and legitimate interest in their care can access it. Echoing the kind of commitments coming from Europe, patients will be able to obtain information on any others accessing their information. In time you will be able to see your information in a summary care record, but you will also have a log of others who have access and you will see it is your GP, your GP nurse and so on. Patients will also be able to raise concerns or anything like that. There is a huge amount built around the assurance and the trust, which is vital in this space because health information is very personal information, but it is vital it be available to health and social care professionals in different settings. There is a great amount of assurance and a really solid, clear legal basis. We will work to maintain the trust and confidence of the population.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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To be clear, the guardrails are set out in section 12 of the Bill. It is important to say we are very respectful and concerned about individuals and their privacy. There are a couple of elements to that. One is that we need them to be in the electronic health system so they can get the quickest possible and the best, most integrated care. If you turn up to a hospital with a major trauma and have a complex medical background, you need the people who are caring for you to be able to access your complete information. Nevertheless, you are also entitled to the protection of your data, how that is managed, how it is shared and who can access it.

Part of our responsibility is the security side of this. We are quite aware of the scale of the cybersecurity attack on the health system that happened. That it happened during Covid, I always felt, somewhat masked the seriousness of it because there was so much disruption in the health system as a consequence of Covid. When the cybersecurity attack then happened at the same time, very significant disruption occurred as a consequence. I often felt people did not really attribute the disruption to the scale of the attack that happened here. We are very conscious of that in how we approach this. This is a live concern, not just for the Irish system, the current system or the future system but right across the EU. We hear of increasing concerns, especially in the eastern part of Europe, about how health systems are managed. We are very aware of that and we are taking every possible step we can on that side of things. There is a balance here. The individual is protected and respected in every possible way. We have set out the guardrails and the way in which that can be done, in section 12 in particular. Then there is a very different perspective in respect of hospitals more generally. They are funded by the State, they participate and that is it.

Michael Cahill (Kerry, Fianna Fail)
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I welcome the Minister. The introduction of a new modern IT system with all patients' records available across the health service will be a game-changer. There is no doubt about that. It is something I have called for. I am aware it will be expensive and will take time to introduce. Is there an approximate timeframe for the introduction of this system?

On CAMHS and with reference to the scandal in the services in both north and south Kerry, can I take it the records of all these children and young adults will introduced to this new system?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Yes. Over time, all those records will be integrated into the system. It will take some time, and I will ask Mr. Tierney to speak to the specific timeline we hope to achieve and envisage achieving. Of course, it is subject to all the elements going well and having the funding to do this in the reasonable way we hope. The goal is that all records will ultimately be in this electronic health system. Mr. Tierney might speak to the detail of it.

Mr. Derek Tierney:

We have asked where we would like to get to ultimately and how we can get there in a stepped way. Earlier this year we launched a HSE patient app, which was about putting information we can currently get access to into the patient's hands so we can start empowering them to take responsibility for themselves and take an interest in their health and well-being.

The second step is to, as I said earlier, mobilise a shared care record, which is about looking to what we have, how we can dip into it, pull it up and connect it in a unified way so that we have a minimum level of information to be able to give back to a patient through the app or through their healthcare-giver, wherever they are in the system. Longer term, we would like to get to an enterprise electronic health record, which would cater for the need of every person on the island and of every healthcare provider who has a stake in providing care for the patient. As I mentioned in response to Deputy Sherlock earlier, one of the intermediate steps, particularly around CAMHS, is how we can exploit existing technology and roll it into primary care community so that we can, for instance, start understanding how we digitise CAMHS, palliative care and other wider primary care services. It is to bring all of that jigsaw together ultimately.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will just add that the app is really important. While the Internet signal is historically terrible in committee rooms in the basement in LH 2000, it is an app you can download. You need a MyGovID to sign in. Obviously, I expect everybody in the room has downloaded it and is part of the group of 80,000 people who have committed to registering their personal health information. The functionality of it would be easier to see were the signal slightly better in the committee room, but I have talked to people who have downloaded it and they can see, for example, all of their medications on it. Sometimes taking complex medication can be difficult. It can be hard to manage, especially when you turn up to a new healthcare provider, to describe what your medication is and what that happens to be. If you log in with your MyGovID, which is secure, you will be able to see locally, wherever you are, where the emergency care centres are and what the primary care options are. You can also see your vaccination record, from both a flu perspective and a Covid perspective. I was embarrassed to realise that there was a bit of gap between my vaccinations and I will not let that happen again this year. You can see your records. It started out being piloted on the maternity side and people could book appointments. We are rolling out increased functionality all of the time. We will get to the point where you can book appointments - where you will need to book appointments - through the app. I would encourage everybody to get it, because this is stage one of this electronic health record, to the extent that Members can put it in their newsletters or email updates to their constituents. If we are going to get to an electronic health record, certainly everyone in the Oireachtas needs to download the app but we also need to start encouraging people to do that. I hope they will see the increased functionality over time and that they will begin to see some of the benefit of it. That is stage one so please go for it.

Colm Burke (Cork North-Central, Fine Gael)
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Deputy Cullinane raised the issue about cost and there is an important question about controlling costs in the development of this. However, we also need to look at savings that will be achieved by having the system there. I referred to Denmark earlier. Back in 2004, Denmark worked out that they were saving about €1.5 billion per annum because of their computerised system. I would imagine that if we have a fully computerised system, it will be a huge saving.

If someone is admitted to hospital, say, as a result of a car accident, and they are not able to give instructions, will staff be able to access their records?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That would be the objective-----

Colm Burke (Cork North-Central, Fine Gael)
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Without consent? Say, for argument's sake, the person is not able to give consent.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That would be the objective because in the current instance that person would have to treated in any event. The objective would be that they would be able to access their records as quickly as possible with whatever identifier was available. The Deputy is right to identify the savings and I will ask Mr. Tierney to speak more to that. I visited the National Rehabilitation Hospital recently. Everything is computerised. There are little trolleys where staff input at the bedside the details that need to be there for the whole system. There is a saving in that it will free up staff's time and facilitate staff in being able to recall records. I have also visited archive rooms in hospitals right across the country. These are rooms that are down around the back of the hospital, in some room far away, and unfortunately we are now requiring hospital staff to find physical files and bring them back. That all takes time, particularly when someone presents in the accident and emergency department. There is a huge time saving that is a cost saving. I will ask Mr. Tierney to speak more to this. However, it is essential that we do this and this is-----

Colm Burke (Cork North-Central, Fine Gael)
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The reason I am raising it is that I was dealing with an incident where someone who had come in from Germany had a psychiatric problem and was admitted to hospital. The person would not give their consent. He was on medication but the German authorities would not release his records. The doctors could not work out even what medication he was on, to such an extent that he had to be transported back to Germany, accompanied by two healthcare officials, because they could not manage him here. The big issue was that they were not allowed under the German system to access his records.

Mr. Derek Tierney:

Let me answer that. There are a few questions rolled up in this so I will try to unpick it if I can. The purpose of the Bill is to ensure a minimum level of health data is captured for the patient's benefit so that when he or she needs intervention, the healthcare provider has a minimum level of information from which to work. At the moment, if I arrive at an accident and emergency department in which I have never been treated before, those who are providing me with first intervention do not know who I am, what my need is or what medication I am on. They do not even know what my history is. Think about the time they spend just to get a basic diagnosis of what is being presented in front of them. If we think about digitising health records, the primary benefits are increasing safety and quality of care to deliver better outcome. On the time-saving piece, I am sure Deputy Daly would agree healthcare professionals would rather spend more time providing face-to-face care than documenting the care they are giving. It is about being equipped with a capability to free up precious, valuable time in the context of giving care rather than administrating paperwork on that level of care. As the Minister says, one of the secondary benefits is the time saved and realised in the overall system. Time costs money and, therefore, there is a productivity saving and a cash release gain, ultimately. Any way we have looked at an enterprise EHR, the benefit-to-cost ratio makes absolute sense here. There is no argument about it.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No.2:

In page 6, to delete line 29 and substitute the following: “(e) data in relation to care (within the meaning of Regulation (EU) 2025/327 of the European Parliament and of the Council of 11 February 2025 on the European Health Data Space and amending Directive 2011/24/EU and Regulation (EU) 2024/2847);”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 3:

In page 7, between lines 35 and 36, to insert the following: “ “personal public service number” has the same meaning as it has in section 262 of the Social Welfare Consolidation Act 2005;”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 3, 11, 13 and 70 are related and may be discussed together.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I ask Deputies to support the amendments in this grouping to ensure all health service providers as defined under the Bill are empowered to collect and record patients' PPSNs. Our health system needs a robust and proven identifier so that health information can effectively and reliably be associated with the correct individual. That is essential for care and treatment and patient safety. As part of this, the Bill aims to enhance patient safety through stronger identified patient processes including best practice use of the PPSN and eircode to uniquely identify patients. In that context, the individual health identifier, IHI, was provided for in the Health Identifiers Act 2014 as a unique identifier for health services. The IHI was designed and developed to enable the unique identification of a patient across healthcare services. Since the enactment of that legislation, the HSE has been embedding the IHI in health information programmes and locations across health services. However, in order to enable the full benefits that IHIs can bring in terms of quality, safety and efficiency, the IHI match rate needs to be as close to 100% as possible. Evaluation of those match rates shows that those health systems that are already collecting and recording the PPSN have significantly higher match rates than those systems that do not. It is also important to recognise that the health systems are part of the wider public service ecosystem, including the national digital strategy. For example, the national data infrastructure, which has been developed as part of the Civil Service renewal plan and the public service ICT strategy, includes the PPSN. It is one of the three trusted unique identifiers, along with eircodes and unique business identifiers, to facilitate the sharing and aggregation of data on a public service-wide basis to support digital services.

Amendment No. 11 amends the reference to the PPSN under the patient summary.

Amendment No. 13 provides for the insertion of a new section mandating a health service provider to record the PPSN of his or her patients and associate the PPSN with any record of the health service provider they make in the provision of health service to that patient. It also empowers a health service provider to request a patient provide his or her PPSN, empowers the HSE to use a PPSN to identify a patient in order to identify and link the patient's health information to his or her electronic health record, and mandates a relevant person to provide the PPSN of a patient where the number is requested by the HSE and they have that PPSN in their possession.

The patient cannot be refused a health service solely because they have not been allocated or issued with a PPSN or because they are not in a position to provide it. That is really important.

David Cullinane (Waterford, Sinn Fein)
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We had lengthy discussions on this subject in the past and I came away from them with a somewhat more clear understanding of it. Is it correct that individual health identifiers were essentially put in place during the Covid-19 pandemic? Was that the starting point or when the process accelerated?

Mr. Muiris O'Connor:

The IHIs have been seeded into hospital systems. The HSE is working with the GP systems mentioned earlier to ensure they can take IHIs and PPSNs. The PPSN is basically the front of house. It is one of a few numbers most people know in respect of themselves. It is a very useful-----

David Cullinane (Waterford, Sinn Fein)
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I am trying to tease out if this is more of a practical thing. It is not that the PPSN will replace the IHI. It is matching it.

Mr. Muiris O'Connor:

The IHI is the back-end, long-string number. The PPSN is the interface with the customer.

David Cullinane (Waterford, Sinn Fein)
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The IHI is essentially the spine, if you like.

Mr. Muiris O'Connor:

The IHI is the unique-to-health identifier and the PPSN is one that extends across the broader public services. In the near future, when people check in at a health facility they will be asked for their PPSN and that will generate automatically.

David Cullinane (Waterford, Sinn Fein)
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Most people will know their PPSN. How does someone find out what their IHI is?

Mr. Muiris O'Connor:

It will begin to appear on some medical-----

David Cullinane (Waterford, Sinn Fein)
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Rather than beginning to appear, if I wanted to find out mine right now, how would I go about it?

Mr. Muiris O'Connor:

I am not sure there is a way to get one's IHI right now. There is a master index on which we have worked with the Department of Social Protection and the HSE. Every PPSN in the country has an IHI which corresponds with it. Our sense is that we do not want to confuse people with two different numbers. The front-of-house number, the interface with patients, will emphasise PPSN.

David Cullinane (Waterford, Sinn Fein)
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If somebody wanted to avoid confusion and wanted to know what his or her IHI is, is Mr. O'Connor saying there is no way of finding out?

Mr. Muiris O'Connor:

As part of the roll-out we can-----

David Cullinane (Waterford, Sinn Fein)
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I am talking about now.

Mr. Muiris O'Connor:

There is not a phone line that offers that access to service, but the information is there. We can engage with the HSE as to how that facility could be made available.

David Cullinane (Waterford, Sinn Fein)
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What about this new app we have heard a lot about.

Mr. Muiris O'Connor:

That would be an excellent way, actually. That is a good idea.

David Cullinane (Waterford, Sinn Fein)
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It could be. I downloaded the app. I do not know if my IHI is visible on that, or is it?

Mr. Muiris O'Connor:

We could build it into the accumulation of extra services in the app. That is a good idea.

Mr. Derek Tierney:

If we go back to the start of my conversation, thinking about the current landscape, we have data on Deputy Cullinane, depending on what care he has been given in different parts of the system. It is not joined up. In parts of the system, what is thought about is what care is being given to Deputy Cullinane in that locality. He could be accessing care at the other end of the country and there may be a number of different identifiers associated with him. What the PPSN is try to do is bring it all together to say-----

David Cullinane (Waterford, Sinn Fein)
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I understand that. We talked about safeguards earlier. I have questions about how we can protect people's data. People are particularly precious about giving out their PPSN. We have had data breaches in the past. In the HSE, we had a cyberattack. Even online, there are lots of scams designed as emails that people get asking to send on a PPSN because it is valuable to scammers. It is important those protections are in place. My fundamental point is that transparency is really important as we roll this out. Trust is really important. We have had a very poor culture of giving health information in the past. It is something we have to change. We have to change the public's attitude as well as systems within the HSE. We all have to be leaders in that space. We have had such resistance in the past, sometimes rationally and sometimes irrationally. If I am told there is an individual health identifier that is obviously important but that I cannot access or where there is no way of me finding out what it is, that could raise concerns or suspicions. If it can be integrated into the app or there were some mechanism to allow people could find it, that would be important.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That is completely reasonable. We will look at it. I wish I could log into the app right now. If the IHI is not there in the background, there is no reason it could not or should not be there. We will find a way of doing that.

Mr. Derek Tierney:

The IHI is built up of different constituents, such as a surname, first name, date of birth, eircode and contact number. We now want to put the PPSN in to strengthen the match rate so when someone accesses the app and logs in by a verified means, they will have trust and confidence that it refers to them, it is their information and it is what the health service is seeing around that person.

David Cullinane (Waterford, Sinn Fein)
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The reason I am asking these questions is that there is an opt-out. People can opt out. There is a series of amendments which we will come to later. We do not want to see people opting out. We want to see people opting in. To opt in, there needs to be that level of transparency. When people see their PPSN is being linked to an IHI, they will want to better understand it. I have made the point.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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It is a fair point.

David Cullinane (Waterford, Sinn Fein)
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If the app is a way putting all of that together, that would be useful.

Mr. Derek Tierney:

I agree.

Pádraig Rice (Cork South-Central, Social Democrats)
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I just want to be clear that the PPSN replaces the IHI at the front end for people. Is that right?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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At the front end, yes.

Pádraig Rice (Cork South-Central, Social Democrats)
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If somebody arrives at the health service who does not have a PPSN, perhaps somebody on holidays, what happens in those cases?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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They will still get healthcare. It is not a barrier to it.

Pádraig Rice (Cork South-Central, Social Democrats)
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Do they use an IHI then?

Mr. Muiris O'Connor:

As Mr. Tierney said, the IHI legislation had a number of keys, namely, forename, surname, date of birth, gender and PPSN. If people do not know their PPSN and do not have an issue with it being looked up, their surname, date of birth and a few other bits of information can be used to identify them and proceed on that basis.

Pádraig Rice (Cork South-Central, Social Democrats)
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Would it be the same for newborn babies, who are not assigned a PPSN until the birth is registered?

Mr. Muiris O'Connor:

Yes, exactly. There are edge cases where we do not expect somebody to have a PPSN. It takes four to five weeks to generate a PPSN for a newborn baby. The IHI has been developed to be available almost at the point of birth. There would be one lined up in the maternity ward for babies.

Pádraig Rice (Cork South-Central, Social Democrats)
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The PPSN will be used once they have one.

Mr. Muiris O'Connor:

Exactly. Tourists would not have an Irish PPSN. They would be assigned a new IHI so those records could be connected. There are commitments down the line where we would be passing the information in respect of a tourist back to his or her country.

Martin Daly (Roscommon-Galway, Fianna Fail)
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It is great this has been solved after so many years and that there is a unique personal identifier with a link to a recognisable PPSN. The PPSN was developed a long time ago but technically this could not be done. Deputy Cullinane made a very good point about having the IHI on the app. Eventually the two numbers will sit on the app.

Mr. Muiris O'Connor:

That would not be too difficult.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 4:

In page 9, lines 8 and 9, to delete “Minister for Public Expenditure, National Development Plan Delivery and Reform” and substitute “the Minister for Public Expenditure, Infrastructure, Public Service Reform and Digitalisation”.

David Cullinane (Waterford, Sinn Fein)
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I move amendment No. 5:

In page 9, between lines 19 and 20, to insert the following:

“Progress report 7. The Executive shall, after 18 months and within 24 months of the passing of this Act, submit a report to the Houses of the Oireachtas outlining:

(a) progress towards system-wide Digital Health Records;

(b) progress on integrated financial management systems and outstanding requirements;(c) progress on digitisation of primary and community care services, including the delivery of technology-assisted care at home;

(d) progress on digitisation of acute health services;

(e) engagement with general practitioners, community pharmacists, and other community practicing health and social care professionals on their information

technology needs as it relates to system-wide integration or interoperability and the modernisation of service provision;

(f) engagement with acute hospitals, including voluntary hospitals, on their information technology needs as it relates to system-wide integration or interoperability and the modernisation of service provision;

(g) resource requirements for the implementation, development and maintenance of major information technology projects;

(h) the extent of data collected for the purposes of population-based planning and any blockages or inhibitors identified during the period requiring policy change or additional funding to resolve;

(i) the level of funding made available for digital innovation;

(j) security risks and the steps taken to mitigate such risks.”

As other members have said, all of this is very exciting. There are a lot of benefits to what is being done here. The framework published last year was a very good and an important piece of work for the health service. I fully support it and I want to see its implementation. The committee has discussed this issue a number of times over a number of years. We had what I would describe as a tense or difficult session with the Secretary General of the Department and his officials. There had been pushback from the Department of public expenditure against rolling any of this out. The Minister might recall some of that. It was controversial at that time. We want to park all of that and move forward. We have the new strategy and a new plan. There are lots of moving parts to this. It would be useful to impose an obligation on the health system to come back in a number of years with a progress report setting out where we are. Some progress has been made since we met in 2023. We got that information today and it is all very worthwhile and commendable.

It is important for us, as a health committee, to keep track of it, particularly given the advantages we have discussed to patients, the healthcare system and so on. Will consideration be given to that? I know these amendments are routinely put down for Bills and are very often not accepted for all sorts of reasons, but given that we have a strategy and there is a lot in this legislation that we all want to see progress and of which we are all supportive, it would be useful to have a report and then a meeting of the health committee to look at what progress has been made. That is the purpose for which the amendment is intended.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I totally understand the intent of the amendment. I have drafted amendments along this line for the same reasons in various contexts. Section 6 contains a provision that "The Minister shall review or cause to be reviewed ... no later than 5 years", but that is not what the Deputy is suggesting at all. I understand what he is trying to achieve and the need for it. This should not require a statutory basis. I should do this review anyway, in co-operation with the committee and proactively, and then offer it to the committee, rather than being required to do it by statute. There is a shared interest in making sure this happens.

I note that the Department of public expenditure and reform is now the Department of Public Expenditure, Infrastructure, Public Service Reform and Digitalisation. I am quite sure, therefore, that officials in that Department share the sense of urgency I have about the need to ensure that electronic health records progress efficiently and in a well-funded way. Members might take the view that they wish to interview officials from the Department of public expenditure, and potentially the Minister, should they find it necessary. I am making the best business case I can in the national development plan review for doing this in a staged and managed way that achieves this outcome in the coming years. I will have no difficulty coming before the committee at any time with a report. I am not sure we need a statutory basis for that and, on that basis, I will not accept the amendment. We just need to do it anyway.

David Cullinane (Waterford, Sinn Fein)
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I accept that. It would be useful if the officials and the Minister appeared before the committee on a yearly basis or every second year. It would be useful to get that update.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That is perfectly fair.

David Cullinane (Waterford, Sinn Fein)
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I certainly agree that we need to put pressure on the Department of public expenditure and reform, whether it is the Minister or the officials, because there has been pushback. I submitted freedom of information requests on this subject. I have read some of the responses. Other officials in previous hearings would be aware of some of the concerns. I understand those concerns because there has been a number of scandals with digital systems. PPARS, for example, seemed to have paralysed the health service. Never again will we go anywhere near it. We have to move away from that.

When we are spending money on very costly systems, we have to get it right, which is why discussions like this are important in order that people can fully understand what we are doing, what we are getting, what the benefits are and how much it will cost, although cost is somewhat sensitive if procurement processes are in place. There is work to be done with regard to the Department of public expenditure and reform. It and the Department of Health are not fully aligned. If we, as a committee, can help in any way to push the former Department on, we should play a role.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I welcome the Deputy's support. I despise having to correct the Deputy, but that Department has responsibility for public expenditure, reform, infrastructure and digitalisation, so I think the Department's enthusiasm for this project is overwhelming. The Minister, Deputy Jack Chambers, has been a really strong advocate for electronic health records. Not to tell tales about the programme for Government discussions, but the Minister is very committed to health digitalisation. Why would he not be, being a qualified doctor and having worked in that system? He is very committed to it and enthusiastic about it, as are the Taoiseach and Tánaiste. Recognising the importance of this project to the State, through long-term cost savings, management of public expenditure, the impact on the current budget, being able to track expenditure through the IFMS and the integration of all these different things, it is an imperative for the Department of public expenditure, reform, infrastructure and digitalisation. I am sure the Department will be as enthusiastic and co-operative with this committee as I am.

David Cullinane (Waterford, Sinn Fein)
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I will add one final point to that. We also had very lengthy discussions in this committee on health spending. Through FOI requests and leaked information, we learned about meetings between officials from the Department of public expenditure, reform, digitalisation and officials from the Department of Health regarding the deficits that were in place for a number of years. The Minister might recall that. There were very sharp differences between that Department and the Department of Health. Later amendments will deal with the tracking of health spending. We routinely submit parliamentary questions on issues and are told that the HSE does not collect data or does not have the data. The more we digitise the health service, the more data we will get and the better we will be able to help everybody. A data-rich health service is one of the best ways to get productivity in the healthcare service.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I agree.

David Cullinane (Waterford, Sinn Fein)
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That is something we need to push and impress on that Department as well. I do not want to overstate the Department's views, but it is important.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I agree with the Deputy. There are a couple of pieces to that. The IFMS system is essential in us tracking spending in HSE hospitals and, crucially, voluntary hospitals. Some of the deficit issues exist on the voluntary side. It is therefore even more important that they are enthusiastic about bringing this in and enabling us to track the consistency of spending, including the cost of a hip transplant in St. James's Hospital versus somewhere else. That is really important. Where we have managed to achieve some progress on that is the productivity dashboard. That shows the value of transparency in hospitals. It perhaps removes some of the myths about one hospital or another and looks at the actual productivity in different specialisms and gives us a real way of analysing that over time. Of course, it requires time to analyse that on a hospital-by-hospital or specialism basis, but at least we have the capacity to do so now. It should be the same with the financial management system.

I wish to make a clarification that I should have done earlier. Mr. Tierney has very helpfully checked and there is a way for people to get their IHI at the moment. People can email hids.info@hse.ie. They can do it that way if they wish but I still think it would be preferable to have it on the app.

Martin Daly (Roscommon-Galway, Fianna Fail)
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I welcome the Minister's commitment to review because this will take considerable expenditure and up-front investment for efficiencies down the line. We have to be careful we do not beat ourselves over the head. We look to the NHS but it cannot be set up as a model. The NHS had a £10 billion issue with its national IT programme between 2010 and 2013. It started in 2003. The NHS was already computerised before that. This is a fraught exercise. There is risk in it, but we have no choice but to push forward. Case studies have been done on the NHS issue over the years. One of the lessons from it is that it is about working from the bottom up, taking small steps, not using a top-down approach and carrying out regular reviews of what is happening. It appears people got into silos. They got defensive about the particular pieces of work they were doing on the system, but approximately £10.1 billion, which is maybe £13 billion, was spent and the NHS still does not have full buy-in from all its trusts. I take Deputy Cullinane's point about the Six Counties, but at the end of the day, this is a difficult, complex exercise. I understand and welcome the work on it.

Pádraig Rice (Cork South-Central, Social Democrats)
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Is the amendment being pressed?

David Cullinane (Waterford, Sinn Fein)
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I will withdraw it.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 6:

In page 11, line 5, to delete “every patient a digital health record” and substitute “every patient a national electronic health record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 7:

In page 11, line 6, to delete “a “Digital Health Record” ” and substitute “an “Electronic Health Record” ”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 8:

In page 11, line 9, to delete “Digital Health Records” and substitute “Electronic Health Records”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 9:

In page 11, line 11, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 10:

In page 11, line 14, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 11:

In page 11, lines 24 and 25, to delete “ within the meaning of section 262 of the Social Welfare Consolidation Act 2005”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 12:

In page 12, line 25, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 13:

In page 12, between lines 32 and 33, to insert the following: “Use of personal public service number

12. (1) Subject to subsection (3), a health services provider shall record the personal public service number of each of his or her patients and shall associate the personal public service number of the patient with any record that the health services provider makes in relation to the provision of a health service to that patient.

(2) For the purpose of subsection (1), a health services provider may request a patient to provide his or her personal public service number to the health services provider.

(3) A health services provider shall not refuse to provide a health service to a patient to which the patient would be otherwise entitled to solely because he or she—

(a) has not been allocated and issued with a personal public service number, or

(b) is not in a position to provide the health services provider with his or her personal public service number.

(4) For the purposes of performing its functions under this Act the Executive may, where appropriate, use a personal public service number to identify a patient in order to identify and link the patient’s health information to his or her Electronic Health Record.

(5) A relevant person shall, for the purpose of providing health information to the Executive under this Act, provide the personal public service number of a patient to whom the health information relates where the number is requested by the Executive, and the relevant person has the personal public service number in his or her possession.”.

This amendment is about the use of the personal public service number, which we have discussed in part with amendment No. 3.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 14:

In page 12, line 35, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 15:

In page 12, line 36, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 16:

In page 13, line 9, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 17:

In page 13, line 16, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 18, 30 and 41 are related and may be discussed together.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 18:

In page 13, line 18, to delete “health services provider” and substitute “health practitioner”.

Amendments Nos. 18 and 30 are technical amendments replacing the term “health services provider” with “health practitioner”. Upon review of the published Bill, it appeared there were a couple of instances where the term “health practitioner” might be more appropriate than “health service provider” as it is more precise and better aligns with the use of the term “health professional” under the EHDS regulation.

Amendment No. 41 is a technical amendment deleting the term “health services provider” and substituting “the executive” instead. That seeks to correct an error in the published Bill as it is the HSE that is required to retain a record in respect of when a health services provider accesses restricted information including the reasons for so doing.

David Cullinane (Waterford, Sinn Fein)
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A lot of questions arise from this. It is more about getting clarity. We spoke earlier of the need for buy-in and trust. It is important that we tease out in which circumstances a person would not get access to data. These sections relate to withholding data for people in certain circumstances where it “has reasonable grounds for believing that such access would be likely to cause serious harm to the physical or mental health of the patient concerned.” We will get to that first. However, in relation to practitioners, it refers to “where there are factual indications that disclosure would endanger the vital interests or rights of the health practitioner”. I will wait for the Minister’s response, but we have had a lot of issues recently relating to CHI where patients had to go to the courts and on the steps of the courts were provided with information and data they needed. Clinical reviews are ongoing into the practice of some clinicians in that hospital. That happens at times, unfortunately. We do not want to be withholding information that would protect the interests of the practitioner. What I am trying to understand here is how tightly the sections of this Bill could be applied. What is meant by “vital interests” of the healthcare practitioners? Can we have examples of why access would be denied on what are called “reasonable grounds for believing that such access would be likely to cause serious harm”? What scenarios are we talking about here?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will ask Mr. O’Connor to come in, please.

Mr. Muiris O'Connor:

I will start and I might bring Ms Doyle in too. The legislation is very determined to ensure that the citizen has full comprehensive rights to access their own information. We are just creating a bit of latitude in the Bill. For instance, if a diagnostic test or a scan for a cancer came through, the health practitioner might wish, for very good reasons, to have a direct personal conversation with their patient in advance of the information being immediately uploaded to their record. That is an instance where it would be appropriate to personalise the information and engage appropriately with the patient. Those are the circumstances. They would be very limited circumstances in which -----

David Cullinane (Waterford, Sinn Fein)
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Does it prescribe those kinds of instances? Mr. O’Connor says a bit of latitude, but sometimes a bit of latitude means you can drive a horse and carriage through it. In circumstances like the ones Mr. O’Connor just explained, there may be a rationale, but the concern is that a medical practitioner would not provide the information because in their view it was protecting their vital interests as opposed to protecting the interests of the patient. We talked about guardrails earlier. What are the guardrails here to make sure no unintended consequences might flow from that section?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will ask Ms Doyle to speak to it and I will come in with an idea.

Ms Emer Doyle:

We are probably looking at two different scenarios here around restrictions. One is around a health service provider or heath practitioner restricting access to part of the electronic health record for a period of time. Mr. O’Connor gave the example of where there might be test results that have come back but where the conversation on the impact and implications of those test results has not been had. The provision there is very much about restricting as briefly as possible and only what is necessary and proportionate. Without wanting to pre-empt other amendments in this session, another amendment draws from data protection regulations, re-emphasising the point that that restriction should only be in respect of that particular part of the electronic health record. It should not be interpreted as a blanket restriction across the electronic health record.

David Cullinane (Waterford, Sinn Fein)
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Ms O’Connor might put herself in the shoes of a patient for a second. If a patient is looking for the information and, in the scenario Ms O'Connor has painted, the medical practitioner believes they need to have a conversation with that patient first, is that then communicated to the patient immediately to say the reason they cannot be given this is that the medical practitioner wants to see the patient? How does it work in practice?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I agree with the Deputy. As he says, it is a really important reflection. He can see what we are trying to achieve here but we may not quite have struck the balance. I might bring in a slight tweak on Report Stage that makes it time limited or time bound because the purpose is not to restrict access to personal information but to ensure that information is given appropriately, sensitively and not in a damaging way rather than restricting access. If the Deputy will let me reflect on it, I will come back on Report Stage, perhaps with a time-bound period, to make sure we are achieving what we intend.

David Cullinane (Waterford, Sinn Fein)
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Yes. That is fair.

Martin Daly (Roscommon-Galway, Fianna Fail)
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We need to be careful because if there is a wait time, for example, there might be results from a scan and it might be information that cannot be imparted over the phone and needs a face-to-face consultation.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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That is the purpose.

Martin Daly (Roscommon-Galway, Fianna Fail)
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We need to be careful about time restriction because the next review appointment might be 28 days or seven days later, depending on the seriousness of the condition. I would be careful. It should be robust if it is time limited and there should be a very good reason for holding back the information pending the outcome of an appointment, maybe.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Let me reflect on it and we will find an appropriate time. The Deputies might have particular suggestions. What we are trying to achieve here is to make sure information is delivered in a face-to-face way and not restricted from a patient in perpetuity.

David Cullinane (Waterford, Sinn Fein)
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I get that. That is fair.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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If Deputies want to think about whether that is, say, three months or what the appropriate period is, I am happy to take suggestions and we will reflect on it as well so that we collectively achieve what we are trying to do here.

Pádraig Rice (Cork South-Central, Social Democrats)
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How stands the amendment?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will press it with the proviso that I will bring a clarification on Report Stage.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 19:

In page 13, line 20, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 20:

In page 13, between lines 26 and 27, to insert the following:

“(6) Nothing in this section shall operate to prevent a health services provider from granting access to a patient to so much of the information sought in relation to his or her Electronic Health Record as may be granted without causing serious harm to the physical or mental health of the patient concerned.”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 21:

In page 13, line 28, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 22:

In page 13, line 29, to delete “Digital Health Records” and substitute “Electronic Health Records”

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 23:

In page 13, line 33, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 24:

In page 14, line 16, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 25:

In page 14, line 20, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 26:

In page 14, line 22, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 27 and 40 are related. Amendment No. 40 is consequential to No. 27. They may be discussed together.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 27:

In page 14, between lines 25 and 26, to insert the following:

“(b) The Executive shall retain, for a prescribed period, a record that the patient or appropriate person acknowledged that he or she had been informed of the matters referred to in paragraph (a) prior to the restriction of access to all or part of his or her Electronic Health Record in accordance with subsection (1).”

This section provides for a patient’s right to restrict access to their electronic health record by health services providers but in advance of any restriction being applied, the HSE is obliged to inform the patient that such a restriction could impact on the quality of care they receive. The amendment allows for a record to be retained of any such conversation so as to show that it did take place and perhaps to help with any misunderstandings at a later date.

Amendment No. 40 is consequential to that and provides for an additional provision to be inserted to allow for regulations in respect of the form, manner and length of time that that record should be retained. I am to consult with the Data Protection Commissioner and other stakeholders in that regard. It is important to note that a health service provider may override the restriction and access restricted information contained within the electronic health record in order to protect the vital interests of the patient. If that does happen, the patient concerned can be advised by the HSE as to the reason.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 28:

In page 14, lines 26 and 27, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 29:

In page 15, lines 4 and 5, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 30:

In page 15, lines 7 and 8, to delete “health services provider” and substitute “health practitioner”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 31 and 42 are related and may be discussed together. Amendment No. 42 is consequential to amendment No. 31.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 31:

In page 15, line 9, to delete “section 15” and substitute “section 15(3)(j)”.

Section 14(1) provides for a patient's right to obtain access to their electronic health record, including details on the information that has been accessed, by whom and when. However, that right can be restricted by the HSE in exceptional circumstances where there are factual indications that any such disclosure could threaten the vital interests of the health services provider or the patient. These amendments seek to correct an omission from the published Bill and provide for an explicit power to make regulations to allow the HSE to restrict the application of section 14(1), and this again is subject to consultation with the Data Protection Commission.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 32:

In page 15, line 13, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 33:

In page 15, lines 18 and 19, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 34:

In page 15, lines 37 and 38, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 35:

In page 16, line 2, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 36:

In page 16, line 4, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 37:

In page 16, line 8, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 38:

In page 16, line 10, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 39:

In page 16, lines 12 and 13, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 40:

In page 16, between lines 14 and 15, to insert the following: “(h) the form and manner in relation to which, and period during which, a record under section 13(3)(b) shall be retained by the Executive;”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 41:

In page 16, line 16, to delete “a health services provider” and substitute “the Executive”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 42:

In page 16, between lines 18 and 19, to insert the following: “(j) measures to permit the Executive to restrict the application of section 14(1);”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 43:

In page 16, line 30, to delete “A Digital Health Record” and substitute “An Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 44:

In page 16, to delete lines 34 to 36 and substitute the following: “(b) subject to suitable transparency arrangements being in place, be used by the Executive where it considers that its use is necessary for—

(i) a public interest purpose in the area of public and occupational health, including activities for the protection against serious cross-border threats to health and public health surveillance or activities ensuring high levels of quality and safety of health services, including patient safety, and of medicinal products or medical devices,

(ii) the development of policy and regulatory activities in order to improve, promote and protect the health and welfare of the public, including service planning and performance management in the area of health, or

(iii)the purpose of statistics, including national, multi-national and EU level official statistics, within the meaning of Regulation (EC) No. 223/2009 of the European Parliament and of the Council of 11 March 2009, related to health or care sectors.”.

This section provides that electronic health records may be used by health service providers for the purposes of care and treatment and also be used by the HSE for specified public interest purposes. This provision aligns with the EHDS regulation in providing for the data contained in electronic health records to be used not only for direct care and treatment but also for secondary purposes. As in the published Bill, these specified public interest purposes mirror those contained in Part 4 of the Bill. Clearly setting them out here, however, seeks to clarify that this provision applies across all sectors, public, private and voluntary, regardless of the arrangement entered into within the HSE. We discussed some of this context a little earlier.

David Cullinane (Waterford, Sinn Fein)
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We would all accept the logic of that and of using what is personal health data for policy development, preparing regulations and the collection of data and statistics and so on. The question then is whether that data will be used in an anonymised or pseudoanonymised fashion only or whether a person's personal information can be made available in the context of doing what I referred to. In other words, is the data only used in the form of anonymised or pseudoanonymised versions?

Mr. Muiris O'Connor:

For secondary purposes, the default would be anonymised data, just to generate the-----

David Cullinane (Waterford, Sinn Fein)
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That is the default, but is it clear in the legislation that this data can only be used in an anonymised or pseudoanonymised form?

Mr. Muiris O'Connor:

We will be legislating later for the detail of the secondary purposes. The GDPR will continue to exist alongside this provision, so identifiable information for research purposes would continue to require the consent of the individuals engaged in that research.

David Cullinane (Waterford, Sinn Fein)
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Okay.

Mr. Muiris O'Connor:

The kind of general audit performance assessment can absolutely be done effectively with anonymised data.

David Cullinane (Waterford, Sinn Fein)
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If the person's information was being used for any kind of research, they would have to give their consent.

Mr. Muiris O'Connor:

Yes, they would have to give their consent.

David Cullinane (Waterford, Sinn Fein)
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Okay.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 45:

In page 17, line 4, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 46:

In page 17, line 6, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 47:

In page 17, lines 9 and 10, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 48:

In page 17, line 14, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 49:

In page 17, line 16, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 50, 51, 55, 56, 58, 65 and 67 are related and may be discussed together.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 50:

In page 17, line 29, after “time” where it secondly occurs to insert “, whenever it considers it appropriate,”.

Section 18 sets out the manner in which the HSE is to request the provision of personal health data for the purposes of electronic health records. A request shall be in writing and shall specify the reason for the request, as well as the period within which the request shall be complied with, including where information is to be updated the period within which updates are to be made. All health service providers are within scope and must comply with these requests. If a health services provider does not comply with such a request, it is open to the HSE to go to the Circuit Court mandating compliance. Amendment No. 50 seeks to remove any ambiguity around the timing and regularity of any requests and to emphasise that a decision as to when to request data and how often rests with the HSE.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 51:

In page 18, line 34, to delete “patients and”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 52:

In page 19, line 8, to delete “Digital Health Records” and substitute “Electronic Health Records”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 53:

In page 19, line 10, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 54:

In page 19, line 13, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 55:

In page 19, line 25, to delete “only”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 56:

In page 20, line 7, after “made,” to insert “and”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 57 and 59 to 62, inclusive, are related and may be discussed together.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 57:

In page 20, to delete lines 8 to 14.

This Bill complements and builds on data protection legislation, including the GDPR. Section 21 of Part 4 provides for a number of procedural and processing safeguards in respect of the HSE's use of its power to mandate the provision of health information. These safeguards must include proportionality, data minimisation, purpose limitation and transparency measures. Amendment No. 57 seeks to serve a number of purposes, including reducing any confusion in respect of the definition of "relevant person", as well as better alignment with the EHDS regulation, which does not make a distinction between public and private healthcare or in terms of its definition of a "health data holder". This amendment also seeks to avoid duplication in respect of the necessary safeguards for requests under Part 4 to be necessary and to be proportionate. The Bill also provides that a request under Part 4 must be relevant, necessary and proportionate for the purpose in relation to which the request was made. Additionally, amendments Nos. 57, 59, 60 and 62 seek to provide clarity on the purpose behind Part 4.

In practical terms, the understanding of the definition of and requirements for "pseudonymisation" vary significantly across the sector. The Bill's text as drafted could be confusing and its interpretation could frustrate the intended benefits of data sharing, so we need some clarification. According to GDPR definitions, "anonymised data" is not personal data and cannot be associated with an individual, while "pseudonymised data" is personal data and allows for data linkage to using identifiable data if and where needed. Amendment No. 61 provides that the HSE shall adopt suitable and specific measures to safeguard the rights of data subjects when processing personal data and this may include limitations on access to the data undergoing processing to prevent unauthorised collection, consultation, alteration, disclosure or erasure of the data, strict time limits for the erasure of the data and mechanisms to ensure such time limits are observed, specific targeted training for those involved in processing operations and technical and organisational measures to ensure respect for the principle of data minimisation. These suitable and specific safeguards are not intended to be exhaustive. My Department has engaged with the Data Protection Commission on these amendments and the HSE is required to consult with the Data Protection Commission on suitable and specific measures it proposes to adopt.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 58:

In page 20, line 15, after “request” to insert “such”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 59:

In page 20, lines 16 and 17, to delete “to data to be furnished in a pseudonymised form,” and substitute “to personal data,”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 60:

In page 20, line 19, to delete “by anonymised data” and substitute “by anonymised or other data (not being personal data)”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 61:

In page 20, between lines 22 and 23, to insert the following: “(5) (a) Where a request under subsection (1) relates, in whole or in part, to special categories of personal data, the Executive shall adopt suitable and specific measures to protect the data, which may include:

(i)limitations on access to the data undergoing processing within the Executive in order to prevent unauthorised consultation, alteration, disclosure or erasure of the data;

(ii)strict time limits for the erasure of the data and mechanisms to ensure that such time limits are observed;

(iii)specific targeted training for those involved in processing operations;

(iv)technical and organisational measures to ensure respect for the principle of data minimisation, including pseudonymisation provided that the purposes of the data processing can be fulfilled in that manner.

(b) The Executive shall consult the Data Protection Commission on the suitable and specific measures it proposes to adopt under paragraph (a).”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 62:

In page 20, lines 30 and 31, to delete “, including whether or not the information is to be provided in anonymised or pseudonymised form”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Amendments Nos. 63 and 64 are related and may be discussed together. Amendment No. 64 is consequential to No. 63.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 63:

In page 20, line 36, to delete “Subject to subsection (7), a relevant person” and substitute “A relevant person”.

These amendments seek to negate the potential of the effectiveness of Part 4 being undermined in circumstances where data holders may seek to rely on the GDPR or other statutory provisions to refuse to comply with a request under Part 4. As mentioned previously, this Bill complements and builds on data protection legislation and suitable and specific safeguards have been incorporated in this regard. The amendment also better aligns with the European health data space, EHDS, regulation, which defines electronic health data and health data holders very broadly.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 64:

In page 21, to delete lines 1 to 3.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 65:

In page 22, to delete line 6 and substitute the following: “(a) on the basis of, and in accordance with, the purposes specified in the request, and”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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At this stage, may I flag an amendment I wish to introduce on Report Stage? Is that appropriate?

Pádraig Rice (Cork South-Central, Social Democrats)
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Yes.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I will table a technical amendment on Report Stage to allow a final outstanding section of the recent Patient Safety Notifiable Incidents and Open Disclosure Act 2023 to be commenced. The relevant section of the patient safety Act includes provision for the extension of HIQA's power to carry out an independent review of a defined type of serious patient safety incident where some or all of the care of the patient was carried out in a nursing home. My Department was advised by the Office of the Parliamentary Counsel that a minor technical amendment is required to ensure that public nursing homes are covered by this provision as well as private nursing homes. The amendment is currently with the Office of the Parliamentary Counsel for drafting and I am signalling my intention to introduce it on Report Stage.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 66:

In page 5, line 5, to delete “An Act to provide for” and substitute the following: “An Act to give further effect to Regulation (EU) 2025/327 of the European Parliament and of the Council of 11 February 2025 on the European Health Data Space and amending Directive 2011/24/EU and Regulation (EU) 2024/2847 and for those and other purposes to provide for”.

This amendment incorporates a reference to the EHDS regulation in the Long Title, emphasising that this is the first of a suite of legislative measures to give full effect to the regulation. The EHDS regulation came into force, as Deputies know, in each member state at the end of March 2025.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 67:

In page 5, line 7, to delete “creation and assignment” and substitute “creation and assignment by the Health Service Executive”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 68:

In page 5, line 8, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 69:

In page 5, line 9, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 70:

In page 5, line 9, after “Record;” to insert the following: “to provide that a health services provider shall record the personal public service number of each of his or her patients; to provide that the Health Service Executive may, where appropriate, use a personal public service number to identify a patient;”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 71:

In page 5, lines 9 and 10, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 72:

In page 5, line 12, to delete “Digital Health Record” and substitute “Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 73:

In page 5, line 14, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I move amendment No. 74:

In page 5, line 16, to delete “a Digital Health Record” and substitute “an Electronic Health Record”.

Pádraig Rice (Cork South-Central, Social Democrats)
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Pursuant to Standing Order 194(3), I have to report specially to the Dáil that the committee has amended the Title of the Bill.