Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I am pleased to present the Health Information Bill to Seanad Éireann following its recent passage through the Dáil. The Bill is about something very simple but very important - making our health service safer, more joined up and more patient centred by ensuring that health information can move securely to where it is needed. Today far too much of our health information is held in totally disconnected systems. Patients repeat their stories, clinicians lack full information and vital insights for planning their care are difficult to access. This Bill begins to change that. It puts patients in control of their information. It supports better care and it lays the foundation for a modern, digital health service. Digitising services across health and social care is a Government priority and successive budgets have provided increasing funding to develop and deliver on digital health initiatives. One such initiative is the HSE patient app, launched in February 2025, which makes us all true partners in our health journey. If Senators have not already downloaded the health app, which I am sure they all have, I take this opportunity to encourage them to do so.

The Health Information Bill provides the clear legal framework needed to support digital health initiatives such as electronic health records, secure information sharing and improved planning. Crucially, it also ensures that Ireland can meet its obligations under the EU European Health Data Space Regulation, which took effect in 2025 and gives patients across Europe greater access to, and control over, their own health information. The Bill, as passed by the Dáil in November 2025, is divided into five Parts with 25 sections. It provides a clear legal basis for the creation of electronic health records. It clarifies the HSE's authority to obtain necessary information for good planning and performance oversight. The Bill is framed around each of us as patients, and our rights to have our health information managed in a way that supports integrated health and social care.

I will provide a brief explanation of the sections. Part 1 provides definitions of important terms used in the Bill as well as the standard provisions including commencement and regulation-making powers. It also provides that the operation of the Act must be reviewed within five years of enactment and a report laid before the Houses of the Oireachtas.

Part 2 provides for a statutory duty to share, and contains sections 7 to 9, inclusive. Section 7 places a statutory duty on all health services providers, whether they be public, private or voluntary. Everybody has an obligation to share personal health data with other health services providers for the purposes of patient care and treatment. The HSE is tasked with setting out guidelines on the information to be shared, how it is to be shared and within what periods.

Section 8 introduces a legal obligation on a health services provider to forward a patient's personal health data to another health services provider at a patient's request. Section 9 places an obligation on any health services provider that intends to cease providing health services to notify their patients about the date on which they intend to do so, and the arrangements they are putting in place to ensure their patients' personal health data can be made available to another health services provider for care or treatment. In essence, the health services provider does not own the data. The patient is in charge of their data and the State is the manager for that. Part 3, sections 10 to 21, inclusive, provides for the creation and assignment of electronic health records for every patient in Ireland. Ensuring that the right information is available in the right place at the right time is fundamental for delivering on Sláintecare's vision of integrated care. Electronic health records will not only support patient access to and control over their own data, but it also provides health professionals with a more complete and holistic view of patients they are treating. The creation of electronic health records will also provide vital population-based data, which will enhance the HSE's ability to carry out the core functions of service planning and management while also driving efficiency and better care.

Section 10 empowers the HSE to create and assign each person electronic health records.

Section 11 sets out the information to be contained in said health record. These contents mirror the categories under the European health data space, EHDS, regulations, such as prescriptions, dispensations, medical imaging studies, medical test results, discharge reports, etc. The patient summary contains 18 information subcategories, which together give a high-level overview of a patient's health. Those categories have been developed at EU level and contain information on diagnoses, medications, allergies, procedures, etc., while patient-provided data reflects the right of patients to insert information on their own electronic health records. That is clearly distinguishable from the information that is put in by a health services provider. The Bill provides for the best practice use of eircode and PPSN to uniquely identify patients in line with national digital strategy and public service identity management. Those stronger identification processes will help enhance patient safety, security of access and data linkage.

Section 12 confirms that providers may collect a patient's PPSN to ensure safer, more accurate information. It is really important to note that patients will not be refused a health service solely because they have not been allocated or issued with the PPSN or they are not in a position to provide that. It is an effort to streamline health services so that we know who we are treating and that we are collecting information for a single identified person.

Section 13 provides that an electronic health record may be accessed by the patient, a health services provider or an employer or agent for the purposes of record maintenance. It also provides that patients can request rectification of information contained in their record and that a health services provider can restrict access by a patient or appropriate person to information where that would be likely to cause harm to the physical or mental health to the patient. Any such restriction has to be necessary and proportionate and should only apply to the part of the electronic health record that would give rise to concern. The HSE will also be required to adopt the necessary safeguards to ensure the security of records to guard against improper access, meeting the requirements of the EHDS regulations and complying with EU-wide legislation on cybersecurity, including the NIS2 directive.

Section 14 provides that a patient can restrict access to information in his or her record so that it cannot be seen by health services providers. The HSE is required to inform the patient that such a restriction could impact on the care that he or she receives but, again, we are trying to empower patients to make the decisions they wish to make. The section also provides that health service providers may access such restricted information in emergency situations where access is needed to protect the vital interests of the patient. Any use of that break-glass provision needs to be recorded and the details made available to the patient.

Section 15 provides that a patient has the right to obtain information on access to his or her electronic health record. The HSE will be required to put in place appropriate logging and auditing functions to enable patients to know what has been accessed, by whom and when.

Section 16 provides for the Minister's regulation powers.

Section 17 provides that electronic health records may be used by health service providers for the purposes of care and treatment and by the HSE for specified public interest purposes relevant to the statutory remit, namely, public and occupational health policymaking regulatory activities.

Section 18 provides that the HSE may enter into a reciprocal agreement with equivalent bodies and so-called third countries.

Section 19 sets out the manner which the HSE can request the provision of personal health data.

Section 20 sets out the process in the event of non-compliance with any requests.

Section 21 provides for HSE guidelines in relation to the Act and persons who have to be consulted, etc.

Part 4 is very important. It sets out a number of specified public interest purposes, including service planning and performance management, for which the HSE can request and receive health information from entities across the healthcare sector. The provisions set out under Part 4 will support greater and effective use of health information. They are an absolutely critical step to moving beyond our current, often fragmented and, may I say, even reluctant approach to information sharing. As an example of that reluctant approach, Senators may be interested to learn of the challenges we continue to have in fulfilling Ireland’s obligation under EU statistical Regulation 2294 of 2022. The objective of that regulation is to provide internationally comparable data on healthcare facilities, resources and utilisation, offering a transparent and accessible view of the broader healthcare system and population-based data sharing.However, while there is now good engagement with the majority of private hospitals in this regard, it has taken us 18 months to get to this point and, even still, one private hospital remains unwilling to share the data required with the Department in order for Ireland to fully comply with this EU regulation. One private hospital is unwilling to share its patients' data, so that Ireland can comply with an EU regulation to gather patient data for the broader benefit of Irish patients. This is completely unacceptable. I propose to update Senators on the nature of this engagement on Committee Stage.

Likewise, Senators may be aware of the delays that I have seen, or the barriers to the implementation of the integrated financial management system, IFMS, among certain section 38 hospitals in receipt of enormous recurring public funding on an annual basis. These are hospitals like, for example, the Mater and St. James's, the voluntary hospitals. People going into a hospital may not be aware if they are in a HSE hospital or a section 38 hospital. Indeed, they may not care as long as they are getting good healthcare but what they will care about is the fact that the State funds all of those hospitals and that the legislation that we are now introducing makes absolutely clear that we expect that hospitals that benefit from the use of public funds across the health sector have a requirement for greater efficiency, oversight and, fundamentally, transparency.

IFMS is a single, integrated financial management system designed to improve financial reporting, expenditure analysis and forecasting across the health sector. It is part of the wider health service financial reform programme. It is my belief that the alignment of financial reporting across the publicly funded health sector through the use of IFMS is a crucial transparency measure for the State to ensure value for investment across the health service. As of July 2025, IFMS had been deployed to all hospital sites directly managed by the HSE, which means some 80% of all hospital expenditure is now managed through IFMS. Planning is under way on the timeline for further extending IFMS to the voluntary hospitals, as well as to other voluntary providers.

I appreciate that I am out of time. It is important that I can come back to this in the closing remarks. I am in the hands of the Cathaoirleach.

Chris Andrews (Sinn Fein)
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Will it take long?

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Not terribly long. This is the most important part. Is that okay?

Chris Andrews (Sinn Fein)
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All right. Yes.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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All section 38 and voluntary hospitals are expected to proactively co-operate with the implementation of IFMS and other key national systems. Service arrangements entered into between the HSE and voluntary hospitals now specifically commit to the introduction and implementation of IFMS and contain various provisions that outline the level of co-operation required to ensure appropriate levels of monitoring and governance, without prejudice to their independence and autonomy.

As with our engagements with private hospitals, I am happy to update Senators on Committee Stage on the HSE's progress in securing sign-off on service-level agreements, SLAs. We are doing it quite differently this year. It had been the case that voluntary hospitals received their SLA too late and also signed it too late. This time, the hospitals received the SLA within 2025 for 2026 and they were given instructions that we expected them to be returned by 15 January. I will update Senators on the progress of that process on Committee Stage.

While the adoption of IFMS is progressing through the service level agreements, this legislation will provide absolute clarity in law in respect of the HSE's authority to request and receive health information. That is why it is really important. I will have to come back to the details because I do not want to go over the time.

Chris Andrews (Sinn Fein)
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Before I call Senator Maria Byrne, I welcome St. Eunan's College, Letterkenny, guests of Deputy Mac Lochlainn. They are very welcome. I understand they will not have homework for the rest of the week, so that is a positive.

I also welcome the two guests of Deputy Sherlock. They will have to do their homework though. They are very welcome.

Maria Byrne (Fine Gael)
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I thank the Minister and her departmental staff for coming here today to discuss this all-important topic. I listened to her explanation of what the Bill is about, which is transparency and bringing information together to ensure ease of access to patient records and to make sure that, for example, my records are not mixed up with Senator Costello's records or those of anybody else. The Bill is really important in terms of sharing those records but also in providing the information.

I saw a reference to prescriptions. Will there be a link with pharmacies? The Minister has encouraged greater transparency and working arrangements between pharmacies, GPs and hospitals. That is really important because many of us go to our pharmacy with minor ailments.Sometimes they can be very important when it comes to looking at medical records. When people go in for a procedure or operation, it is important that the consultant or whoever they see knows as much about their patients as possible. This legislation has a really important role to play in relation to that.

From reading through the Bill, it is about the consultant and the medical team knowing more about the patient so that they can assess them in a more transparent and proper manner. It will be easier for the person who is diagnosing or working with a patient if they have all their information in front of them.

It is disappointing to hear that there is a private hospital not willing to share its information, given that I might end up in a public hospital today and in a private hospital another day. It is very important that there should be more sharing of that information. It is about patients' health, safe access and making sure that they have a safe stay. If the consultant or whoever is looking after a patient at the time does not have all that information in front of them, as a layperson, I expect that would impede the accuracy of diagnosis for a patient in hospital.

I hope that all hospitals come on board in terms of sharing their resources with any of the medical people we deal with, from the GP to the pharmacist, or even the dentist so that all the information is input into the one place. I also welcome the fact that the patient has access to their own information. I remember looking at my record when I was in hospital and I did not have a clue what was going on. We take the word of the doctor or the consultant. I do not say that they do not know what they are talking about but it is important for a patient to look at their own record. Overall, I recommend this Bill and support it. I thank the Minister and her Department for bringing it forward. I look forward to working with her in the future on the delivery of the Bill.

Nicole Ryan (Sinn Fein)
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I welcome the Minister. We in Sinn Féin support this Bill. We support it because digital health records are not optional, they are fundamental to patient safety, accountability and the delivery of a modern health service. Accessible, integrated patient records are at the core of enabling better healthcare outcomes.

However, supporting the Bill does not mean ignoring the context in which it arrived, because it is now 2026 and the Government is only reaching the starting gate for a digital transformation of the health service. We see this failure constantly in our work. As legislators, we table parliamentary questions and are told - sometimes time and time again - that the HSE perhaps does not capture the data; sometimes it does not hold the data; or that the systems are simply not there. That can be frustrating.

What is being proposed is important but it is not the full electronic record system. It is limited in what it can do. We still do not have a fully integrated financial management system across the health service. As the Minister mentioned in her opening statement, waiting lists remain fragmented. The Minister is aware that data is powerful. When clinicians have access to accurate shared information, it provides for quick decision-making and patient outcomes. When data is not collected and not shared or not trusted, the entire system suffers. It makes no sense that GPs, community services and hospitals cannot fully integrate patient care, access complete records or see the whole picture of a person's health needs. Clinicians have consistently told us that a lack of access means delays in diagnosis and treatment for people and sometimes things are missed altogether. That is why electronic health records are very transformative.

Primary care and community care are also significantly behind in some areas. Despite the commitments, progress in recent years has been very slow. I will ask the Minister two questions to clarify the position. She might not be able to answer them today but we can hash it out on Committee Stage. I assume there is going to be a concrete, funded plan for integration and perhaps a potential timeline for when the Minister expects it to happen. How will community providers, specifically GPs, be supported to connect and integrate into the system, especially in very remote areas? I think, for instance, of Carna in Connemara, where the infrastructure is rural, the Internet may not be fully there or it is not really accessible. All those kinds of things can be hashed out.We also need to move beyond the fear that has paralysed progress for years, which is that past failures cannot be excuses for permanent inaction. Other countries have learned and moved forward, and Ireland has stalled, and patients have paid the price as a result. We welcome this legislation because it is a great starting point. However, it is not the whole success story. I know the Minister is going to be working towards that, and we will all work with her in this House to achieve that. As the Minister knows, patients, clinicians and communities deserve a health service that is modern, connected, safe, accountable and that does actually have the potential to really save lives properly.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I thank Senators and the Cathaoirleach. Last week, I secured Government approval for funding for the broad electronic health record - the completely integrated system - and to go to market. We know there are vendors interested, and I will be going back to Government once there is a sense of what the market is saying in relation to bidding for that. There are three stages to electronic health records. One is the patient app, which Senator Costello referenced. Nearly 150,000 people have downloaded that. The second stage is the shared care record. We are rolling that out in one of the regions already. We are doing it region by region. That is the complete picture of a patient's record within hospital but then, as the Senator correctly said, what we ultimately want is the integrated system ranging from GP to community provider to pharmacist. That has to be a single integrated system, so that is what we are working towards. As I said, we are literally going to market. The HSE is going to market on that. That is what we are working towards. This Bill gives us the legislative underpinning to do all of that. That is the purpose of this Bill. It is really important. I thank Senators for their support for it. I greatly appreciate it.

There are huge benefits from electronic health records. One of them is clearly that if I have had a trauma and turn up at a hospital I do not normally attend, they can access all of the details, such as what my background was, what injuries I may have, what allergies I have or what medications I am on. It is so obvious that it is in my interest that information be available and shared. Even if I choose to restrict access to my information, which I may as a citizen, that break-glass provision in an emergency situation enables people to be able to treat me in the best way. It is also really important that my health data, as much as everybody else's, is shared in an anonymised way in order that we get a better sense of a population health database so that we can learn about what the trends are and what is happening. Then, it is even more important that we share that information at a European level in order that we are learning about where population health is going in an anonymised way, of course.

I want to be, and I want my kids to be the beneficiaries of sharing information in real time in a real way where we can benefit in terms of diagnoses, trends and everything else. There is a huge value in that. That means a couple of things. It means a legal basis for sharing data. It means that the HSE is the body that collects that data. It means that everybody shares the data and, again, I share Senators' frustration that there would be any entity in Ireland, with licensed medical practitioners with a licence to practise medicine in this State, which would not co-operate. I find it astonishing that a private healthcare provider in Ireland would not co-operate with the repeated requests of the Irish State, including at Secretary General level, and that I have to raise in the Seanad that an engagement going back to 2024 to share detailed healthcare activity in fulfilment of an EU regulation would not have been complied with. It is quite astonishing. There is an obligation on that healthcare provider to comply with the regulation. That data has been requested from 2024 for the purposes of fulfilling our EU regulatory requirement and all of the private healthcare providers have now shared their data with the Department of Health statistical team but for this private hospital. I find that unacceptable, and I am appalled that I have to bring that to the attention of the Seanad, but it is relevant to all of the patients in that hospital that their data be shared in the same broad population benefit way that I am describing.

It is just as important that we are tracking data and spend from a governance perspective, as Senator Ryan referenced, with the financial management integrated system, the IFMS. We are a small country, and we cannot have disparate financial management systems. The State funds healthcare in Ireland. That is the policy we have all adopted. We fund the section 38 hospitals, which have come from a different historical background, and that is fine. However, where they are receiving the overwhelming portion - 95%, 96% or 98% - of their funding from the State then they have to comply with the State's rules in relation to how we monitor and track spending. The benefit of that is we get insight into how we might better procure information. If we can track all of the product codes, say, product code 0001, that all the hospitals are buying and we now know how many are being bought, maybe we can get better value for the Irish State for doing that procurement in a different way. Maybe we can manage costs in a different way. Maybe we can make sure of better standardisation by having that information and being able to track that. Crucially, however, at the end of the day, if I, on behalf of the Irish taxpayer, am giving hundreds of millions of euro to any entity then I have an obligation to be able to see what that is. I have written to all of the voluntary hospitals. I am very pleased to update the Senate that I have received positive responses from all of the section 38 hospitals, as well as good progress on the ground in terms of implementation. I will call out St. James's and Tallaght hospitals in particular for very good progress in relation to the implementation of that, which is no surprise. It is a very good hospital in Tallaght. There is progress in relation to all of the others.

I want to highlight, too, because of our lived experience, the two examples I have given Senators. Notwithstanding that the IFMS is already in the service level agreement of those hospitals, it has been a challenge over the last 12 months to make progress on that. I have referenced the private hospital data sharing piece. I have to say that given our lived experience of a poor culture of data sharing across the Irish health services, I did instruct my officials to work with the Attorney General's office to review the text of this Bill. On the back of that work, I wish to inform Senators that I will be proposing a small number of specific amendments to the Bill at the next Stage, which is Seanad Committee Stage, which will clarify again and even more precisely the duty of health services providers to share health information to the HSE. I will add to section 22 a reference to integrated service planning and effective and efficient use of resources within the public interest purpose of policymaking and regulatory activities. It would put beyond all doubt the absolute clear obligation of health services providers to implement the IFMS and share date for this purpose of policymaking, integrated service planning and the effective and efficient use of resources. There have been concerns in relation to the role of company directors and charities regulators in that. Of course, it should not be for any person in this House. Senators are more than aware that the first duty of any person in this State or any corporate entity operating in this State is, of course, to comply with the law first and foremost beyond anything else. As legislators, therefore, it requires us to make absolutely clear what that law is. I will be seeking the Seanad's support for those Committee Stage amendments in due course.

Chris Andrews (Sinn Fein)
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When is it proposed to take Committee Stage?

Maria Byrne (Fine Gael)
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Next Tuesday.

Chris Andrews (Sinn Fein)
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Is that agreed? Agreed.