Health Information Bill 2024: Second Stage (Resumed)

Question again proposed: "That the Bill be now read a Second Time."

Deputy Stephen Donnelly

Part 2 of the Bill provides for the duty to share and contains sections 7 to 9, inclusive. Section 7 places a statutory duty on health service providers to share personal health data with other health services providers for the purposes of patient care and treatment. In keeping with data protection principles, such sharing must be necessary, relevant and proportionate. Section 8 introduces a legal obligation on health services providers to forward a patient's personal health data to another health services provider at the patient's request. Section 9 places an obligation on health services providers who intend to stop providing health services to notify their patients.

Part 3 provides for digital health records and contains sections 10 to 20, inclusive. Section 10 empowers the HSE to create and assign to each person a digital health record. Section 11 sets out the information to be contained in the digital health record. Section 12 provides who may access a digital health record. Section 13 provides that a patient can restrict access to information in his or her record so that it cannot be seen by health services providers. Section 14 provides that a patient has the right to obtain information on access to their digital health record. The HSE will be required to put in place the appropriate logging and auditing functions to enable a patient to know what information has been accessed, by whom and when. Section 15 sets out the Minister's regulation-making power in relation to the accessing of digital health records. Section 16 provides that digital health records may be used by health services providers for the purposes of care and treatment. Under the Bill, the HSE can use this data for important public interest purposes relevant to its statutory remit.

Section 17 provides that the HSE may enter into a reciprocal agreement with equivalent bodies in non-EU countries on the electronic exchange of information in digital health records for the purposes of care and treatment. Section 18 sets out the manner in which the HSE is to request the provision of personal health data into digital health records. All health services providers are in scope, including private and voluntary providers, and must comply with such requests. Section 19 sets out the process in the event of non-compliance. Section 20 provides for HSE guidelines in relation to the Act and the persons who must be consulted in this regard, including health practitioners and patient groups.

Part 4 of the Bill addresses the provision of health information to the HSE for secondary-use purposes relevant to its statutory remit. Section 21 sets out that Part 4 provisions are without prejudice to existing legislation on the provision of information to the HSE. Overall this section empowers the HSE to request the provision of health information from a relevant person, which is defined as, "(a) a body established by or under an enactment to perform functions in relation to health services," such as a public hospital, "(b) a person with whom the Executive has entered into an arrangement under section 38 or 39 of the Health Act 2004," which could, for example, be one of the voluntary hospitals, or "(c) a person, other than a person referred to in paragraph (b), with whom the Executive has entered into an arrangement to provide health services", which could, for example, be a private provider.

Sections 21 and 23 provide for a number of processing and procedural safeguards on the HSE’s use of this power to mandate the provision of health information. Section 22 sets out the process required in the event of non-compliance with the request.

In conclusion, I look forward to the debate today. This is a technical Bill. It will spend time at committee. It will be interrogated as it must. It lays the legal foundation for what will, in time, be one of the most important transformations of patient care in the country. All of us here today speak with healthcare workers who talk about their frustration at having to use paper files. In our community health services, there are little to no digital records. We have people literally carrying paper files around the community with them. It is simply no way for this to be. This law will be important.

I think it will help to bring about a change in culture in our health services. Parts of it are excellent but I had a case recently where a patient was seeking their own information from a public hospital and they were told they could apply for it under GDPR and it would take six weeks to give it to them. That is not required. We do not need this law for that. The culture in the hospital should be such that the only response to that person would be, "Of course. We will email it straight over to you." Some providers do that very well. Others have a way to go on that. This will provide the statutory underpinning. We are putting much money, effort and resources into e-health. We need to work right across the healthcare space in hospitals, community, general practice and pharmacies to make sure there is a culture of sharing information, protecting the information and making it available in a way that provides the patient with the best possible care in the quickest possible time.

Deputy David Cullinane

I am sharing time with my colleagues. Sinn Féin will support the Bill. This legislation provides, in the main, for digital health records. Digital transformation is essential to improve patient safety, bring the health service into the 21st century, improve productivity, efficiency and value for money, and to properly hold the system to account. Accessible patient records are at the core of enabling better healthcare. Late in the day, at the end of the Dáil term, the Government has arrived with legislation that was needed ten years ago. It is amazing that still in 2024 we operate a largely pen and paper-based health service with poor connectivity between hospitals, GPs and community services. Data systems and physical hardware are outdated and behind the curve. Members see that when we table parliamentary questions and often the response is the HSE does not capture or hold the data or the systems do not speak to each other. The Government is only reaching the starting gate. Bizarrely, the HSE was at the starting gate in 2015 when it launched the ehealth strategy for Ireland but it was never funded, as the Minister knows, or implemented. The Department of Health is now on its second digital health strategy but has little to show for the first.

A business case for electronic health records was submitted in 2016 but the Government did not sanction funding for it. Part of the rationale for delaying full investment in electronic health records was to see how it worked in the new children's hospital. One might agree how daft that was given all of the delays with the children's hospital. There has been a five-year delay in the project. The hospital is not built and we do not know how the electronic system in the hospital will work. The Government still has no timeline for delivering a full, comprehensive electronic health record system.

While I acknowledge that what the Minister proposes is important, it is a much watered-down version of basic shared care records which we are told will be built up into a full EHR system in the future. We are far from where we need to be and two decades behind our European peers. Without proper digital systems, we cannot collect proper data, hold services to account or even ensure value for money in the healthcare system. That includes an integrated financial management system and other technology reforms outside the scope of this Bill which have not been delivered on time either. Without these systems, patient databases or disease registries cannot be created to ensure services operate optimally. The real work is only starting now at the end of the Minister's term in office, 13 years after Fine Gael came into office, and we are at the starting gate of transforming the health services digitally. The Minister for Health has two important questions to answer following this Bill. What is the plan to fund and deliver it? How will he connect, integrate and support community providers like GPs?

My party will deliver an unprecedented investment in digital transformation. I will launch our five-year plan on health in a few weeks. This will be a key component of that plan because we must bring the health service into the 21st century and be brave enough to make the decision to invest in this area. I spoke at a number of conferences which were also addressed by the Secretary General and other officials from the Department of Health. There was a sense that the PPARS controversy is somewhat responsible for reluctance in the Department of public expenditure and reform and, at times, even in the Department of Health to move on some of these issues. We must put that behind us, however. We must invest, provide the funding and make sure we have the ability to deliver the necessary systems. It is not just a paper and pen healthcare system; we do not have interoperability even in healthcare systems. Some hospitals, such as voluntary hospitals compared with HSE hospitals, for example, operate different systems. No all of the information is captured. I am one of those who for many years complained about waiting lists for children with disabilities. I was made aware about 15 months ago that there was a problem with the system whereby the software was out of date and the company that had provided it in the first place had gone out of business so a whole new system had to be created. In the meantime, basic information was not being captured. It was not known how many people were on the list, which is part of the problem.

We know data is rich in a healthcare system. If data is presented to healthcare professionals and clinicians, it almost removes any argument in respect of different opinions because data underpins everything. If it is not being collected, shared or stored, however, that is a real problem. It is also the case that if staff in many hospitals are still using pen and paper, with all of the difficulties and challenges that represents, and the madness of it in the 21st century, that is not the best way to deliver the best healthcare. It does not make sense that GPs, community services and hospitals cannot join up and integrate patients' care, access their records or see and get a full capture of their healthcare needs. Clinicians have told me this is important because if they have access to that information, they are in a much better position to pass judgment and see in the round what might be wrong with a patient. Some things can be missed and they have to wait for information to come from elsewhere. It will be transformative when we have full electronic health records. That is an important part of the journey to where we need to go in terms of digital transformation but it is not the only part.

Primary and community care, about which the Minister spoke, are also important. Like hospitals, we are light years behind other European countries when it comes to electronic systems in this space as well. There is a long way to go. Very little has been done over the past five years. The Minister said an app is ready to go live. I do not know if that will be next week or next month; we still do not know what that app will do exactly. I was briefed by an official from the Minister's Department and I accept that it looks to be of value. I await the app going live. It is all baby steps which are far too late, however, coming at the tail end of the Minister's term as Minister for Health. He has come forward today with a Bill, with respect, possibly weeks and certainly months before a general election, promising to do things in the future. He may not even be the Minister for Health after the general election. It is too little too late. Part of the blame rests with the Minister but a bigger part rests with the Government, which did not properly invest in the health service on the capital side to ensure there is funding to deliver. It also lies with the Department of public expenditure and reform, which simply does not get it when it comes to the need to invest in our health service in order that we can have a 21st-century service that provides safe, accessible and modern health services with the digital systems needed.

Deputy Thomas Gould

It is important that we discuss this today. It is disappointing, however, that the Taoiseach, Deputy Harris, in his time as Minister for Health did nothing to sanction or secure funding for this. To be fair, Fianna Fáil has not been much better in health but at least this Bill is now being brought forward, towards the end of this Government. Will we see it passed in the light of day before a general election? We need this step forward to move away from the pen and paper and the back of a fag box. That is not the way to run a modern health service. We have seen the impact on patients, with files lost and people spending months waiting for files to be transferred from hospital to hospital. Often, they are unable to access their files to ensure they get the treatment they want. It should be a digital system. Why has it taken so long to get here?

I will caution that this cannot be a means to add more burden and bureaucracy to a health service that is already overwhelmed by bureaucracy and red tape.

This Bill must be used to reduce the time spent filling in forms. It must be an asset rather than a barrier. From speaking to representatives from community addiction services, I am aware that the bureaucracy they face in the context of the health service is huge. I recently spoke to a lady who works for 19 hours per week. She supports four clients and oversees the support provided to ten additional clients. She recently spent ten hours filling in forms to secure a grant of €5,000. This lady lost out on hours that she should have spent with the vulnerable people she helps and ensuring that the needs of the other people she oversees supports for were looked after. I am informed that this type of bureaucracy is being felt right across the various addiction services. It leads to long delays in accessing treatment, to staff burnout and to low morale as a result of staff having to do this. It is a disease in our health service and its symptoms are most acute in the community addiction services.

There is a need for the Government to bring forward solutions to the crises in CUH, the Mercy University Hospital and the South Infirmary Victoria University Hospital. A lady recently contacted me who was in agony waiting for a knee replacement. She was housebound and could not even get in or out of a car. She could not play with her grandchildren. Her quality of life was destroyed. This is a woman in her early 60s. I was told she was on an urgent waiting list to see a consultant. She will not see the consultant until 2027. Luckily, through pressure from me and on the basis of reports in The Echo in Cork, the lady was given an appointment for today. She was due to wait for three years in pain. How can anyone who is in urgent need of access to medical treatment be on a waiting list for three years? This lady could have been seen in the elective hospital if that hospital had been delivered. The Government has been in office for four years but is no closer to delivering an elective hospital in Cork. There is no planning permission, no workforce plan and not a sod turned. That is shameful when one looks at the waiting lists in Cork.

As an election draws closer, it must be stated that the people of Cork North-Central deserve better. They want clear decisions from the Minister and this Government. This will be the fifth election in a row in which promises will be made in respect of a hospital that has not been delivered.

Deputy Mark Ward

We support this Bill because it provides for digital health records. Digital transformation is essential to improve patient safety. We need to bring the health service into the 21st century in order to improve productivity, efficiency and value for money and properly hold the system to account. It is 2024, and the fact we do not have an integrated IT system across the HSE is a damning indictment of successive Fine Gael and Fianna Fáil Governments. We do not just see trolleys of patients, we also see trolleys of files being wheeled up and down the corridors of our hospitals.

I want to raise the case of one of my constituents. Her mother passed away in 2020 from ovarian cancer. She received appointment letters in the post in 2020 and 2021 for her mother after her mother had passed away. She informed the HSE of her mother’s death, which happened while she was under the care of the HSE, and thought that would have been the end of it. In 2022, she received another appointment letter and a phone call to say that her mother had an appointment for CervicalCheck. Her mother had her cervix removed in 2019 as part of her treatment. Imagine the upset that receiving such a letter caused the family. The family, who I know very well, contacted me and I made representations to the HSE. I received a response - I have a copy of it - which I gave to the family. I do not doubt the sincerity of the person who wrote the letter, which stated:

I wish to apologise for the letter which the family of [the patient] received and offer my condolences at this very difficult time. Please be assured we have updated [the patient's] record so that no other letters will be sent.

The family accepted this in good faith and at face value and thought it would be the end of the matter. However, this week they received another phone call asking if their mam was attending an appointment for that day. This is just not good enough and is causing huge upset to the family. The family was also upset because the appointment that was made for their mam could have been given to somebody who needed it.

The lack of a modern IT system within the HSE is not only causing upset for grieving families, it is leading to huge inefficiencies within the HSE. How many appointments has the HSE made for patients who have passed away because it does not have an up-to-date IT system?

In 2023, I welcomed the fact TrakCare was launched in the National Forensic Mental Health Service in Portrane to allow for patient care plans to be delivered electronically and for patient records to be retained in a clear fashion. That we moved away from archaic paper files was a long time coming. This was highlighted by the Maskey and Mental Health Commission reports into CAMHS. I wrote to the Minister to ask him to consider a wider roll-out of this system into other mental health services to make them more efficient so they could link up between primary care specialists and other specialist services to ensure this integration of care. I was informed there would be a separate project for other mental health services. Will the Minister provide another update on this project? I wrote to him requesting such an update. We need a mental health service that is suitable for the 21st century. We need to ensure the necessary IT systems are rolled out across the State to improve service delivery and the delivery of care.

I want to add a word of caution. If we are to proceed to a first-class integrated IT system within the HSE, we need to make sure we get value for money. We cannot afford to see another runaway train like we have seen with the national children’s hospital.

Deputy Donnchadh Ó Laoghaire

The Minister will be very familiar with some of the commentary that has existed for years around the HSE and the health service. The kind of things one hears when in conversation with people is that there is too much administration, there are individuals with clipboards and things like that. Some of that commentary is unfair and maybe people do not necessarily understand that a person with a clipboard might have a very clinical job to do.

The perception is nonetheless of a system that is not quite delivering, for the number of people who are involved in it, and that it is not as productive as it needs to be. The administrative systems are a big part of the problem here. People find it difficult to comprehend the fact that there are two trauma hospitals in Cork and that if a person was in the Mercy University Hospital on a particular date and two months later, for whatever reason, was admitted to CUH, patient records cannot just be sent across electronically but must be transported by courier between the two. I understand that these systems are complex and that it is a big job. It is no small task to try to integrate different digital systems, and there is such a multiplicity of such systems across the healthcare task. It is a significant undertaking. I welcome the fact that the Government it is undertaking it. However, it is difficult for patients and their families to comprehend that this is the case.

It is difficult if someone has an ill relative in a hospital bed and is trying to get answers but the whole picture is not available. As Deputy Ward pointed out, when doctors rely so heavily on data, inevitably there will be clinical consequences when the data is not available quickly enough, is not complete or is in such a form that it is difficult to navigate. We sometimes deal with people who have had multiple hospital appointments during a period that their files are quite large and their doctors are rushing between appointments and trying to figure out what information is relevant in the here and now. It is crucially important that we address this . It is an ill wind that blows no good

One of the good things that came from Covid is the digital prescription system being operated by chemists. How that system operates much more efficiently now than it did prior to Covid is an example of how much of a difference having the right systems in place can make. It is crucially important.

Deputy Cullinane raised a valid point to the effect that we are coming to this quite late. It does underpin the modernisation of our healthcare service, so we support the objective of this legislation and will engage with the Minister.

I take this opportunity to raise a concern about the healthcare system as it stands. It is not just for the reasons we have discussed that morale is low. During the local election campaign, I met a woman who was a nurse in one of the hospitals in Cork for 25 years. She told me she was never so scared of getting sick than she is now. It was just her concern. The trolley epidemic that happens every winter is wrong but we have become accustomed to it. The fact is that large spikes in the number of people on trolleys can happen at any time during the year now.

That is the pressure they are under. I know the pressure that the CUH and Mercy University Hospital and the South Infirmary Victoria University Hospital are under. Large numbers of people are finding it difficult to even take leave because of the pressures the system is under.

The wider reform of the healthcare system needs to continue. Deputy Cullinane is working on very ambitious plans. We need to be ambitious. Our people deserve a better service. There are some excellent people working in our service and there is no doubt about that. They are working extremely hard. They are very committed. Many people could earn more in other professions or in other parts of the world, but they are dedicated to our healthcare service. They deserve a better system than what they have.

Deputy Duncan Smith

We welcome this Bill, which is very long overdue and the purpose of which is to provide, among other things, a legal basis for the development and deployment of digital health records. The Minister admitted that we have lagged significantly behind the rest of Europe on this. The reality is that our people have not been getting the best care they could due to the paper-based nature of our health records.

We live in a world where technology is rapidly transforming our day-to-day lives, yet in our healthcare system, digital innovation has continued to elude us. What this Bill can provide is the legal basis for a more efficient, safe and patient-centred healthcare system. One of the most important things the digital health record will provide is better continuity of care, particularly for people suffering with long-term illnesses. I have just assisted a constituent through a process of complaint that was based on a misreading of a very large paper-based record in an acute hospital. Luckily, the issue did not have serious impacts on illness or worse, but it could have done. It is minor, but this genuine complaint took up a large amount of administration. These are the kinds of things that could be avoided. This can and should be genuinely transformative for our health system if we deliver a proper electronic health system. It could genuinely save lives. This will not just improve administration, but it will have very tangible health benefits for individuals.

Digital health records will be vital to drive efficiency across our health service. With waiting lists, as long as they are anything that can be provided to our medical staff to make their jobs easier and quicker needs to be prioritised. This is why we welcome this Bill but we are so disappointed that it is long overdue. We know from examples across Europe that digital health records do exactly that. We need to see this Government and that which will succeed it deliver on the digital health records. There is an opportunity here for our healthcare staff to feel like they are being listened to by Government, which is something they feel has been sorely missing for a number of years.

The upside of digital health records being introduced to the Irish context cannot be understated. This can be a real game-changer for our health service. We cannot afford to stay in the last century vis-à-vis medical records. Ask anyone who works in our health service about the sheer amount of paperwork that they have to complete. This is literal paperwork, and it is overwhelming. It is a complete drain on limited resources and specialist resources in our health service who should be at a bedside or patient facing as much as possible, with a minimum amount of time being spent at the desk.

The reality is that the introduction of digital health records is not just important for patients, it is equally important for staff members and for improving the work balance of healthcare workers. We know we have a problem with retention in our health service and much of that is down to the pressure that our workers feel on a daily basis. One of the key integral pressures that we hear back about from speaking to workers and their representatives is the amount of non-patient-facing related work they have to do. Year after year, the jobs of our healthcare staff get harder, instead of being made easier and more efficient. There is a responsibility on all of us in this Chamber to do everything we can to help them and to ensure that once this enabling legislation is passed, that what is envisaged in it is delivered.

In my position as health spokesperson for the Labour Party, I have made it abundantly clear that I and we feel that the Government has thrown in the towel when it comes to fixing the health system. The fraudulent budget of 2024 and the subsequent ongoing recruitment embargo - which still exists even though the Government said it had been lifted - are still wreaking untold damage on the staff and health services across the country. While the Bill, as enabling legislation, is welcome, it must be stated that we are still a long way away from having the real efficiencies and health benefits being delivered to our patients, which is what digital health records can do.

Constant delays are, unfortunately, a theme of this Government in relation to the health service and the delivery of big projects. We, of course, are continuing to deal this week, again, with the omnishambles that has been the children's hospital. Yet, in 2016, a ten-year business plan for the implementation of a national EHR system estimated that it would amount to up to €875 million. That was in 2016. Nearly a decade has passed. Nothing is the same price as it was eight years ago. We do not know what the costs of a digital health system will be, but we have to it bring in and we have to ensure that it does not become another runaway train of health spending. It needs to be delivered. It needs to be delivered professionally. It needs to be delivered responsibly. It needs to be delivered in a way that has real financial accountability.

In 2021, HIQA highlighted what it said were the major deficiencies in the current information system with data on patient health usually being managed on different electronic systems or on paper-based systems. This affects people's health and safety within our health service. I have seen the real-term effects of how far behind we are. Another young man was in my advice clinic last year. Unbeknownst to him, the reason he was not getting the care he needed was due to a missing paper file. This was a serious health issue at the time, which, luckily, we were able to catch. However, he was not receiving the care because of a missing file. It is embarrassing in this or any day and age for any health service.

Serious questions need to be and should be asked about how the implementation of DHR has been delayed thus far. In January 2023, the HSE’s then head of digital transformation, Professor Martin Curley, resigned from the post. He stated that his efforts to introduce new technology solutions were repeatedly blocked by senior administrators. I need to ask the Minister, and I hope he will address this when replying, if is this still a concern for him. Are these blockages still going to be in place? January 2023 is not that long ago. It is unacceptable that there should be any blockages by any senior officials within the HSE in the context of this much-needed transformation.

As it stands, our healthcare system is disjointed and fragmented. We have spoken about this before. There are major issues with siloed care that have impacts throughout our health service. It equals poor care. A modern healthcare system needs to be agile, and information needs to be shared and must flow freely between our healthcare providers, whether those are GPS, doctors, nurses, consultants or specialists.

We have situations where public patients are referred to private hospitals for MRI scans, etc. Will this system ensure that those records are going to be shared between a private hospital and a public hospital? These are the questions that we need to see being answered. We need to be confident that they are going to be delivered.

A duty to share places a statutory duty on health service providers to share personal health data with other health service providers for the purpose of patient care and treatment. What is envisaged in this regard is comprehensive in that it spans public and private use and voluntary settings. It is vital for the continuity of care and for the integrated health system that is envisaged in Sláintecare.

Leaving aside any surplus we already have, we know that in the context of budget 2025, €14 billion is in play following the conclusion of the Apple tax case. We need to see the large majority of this money being invested in housing and infrastructure. Yet, if money is going to be allocated to the area of health - and there are many areas of health which do need direct funding and assistance - and if digital health records are going to be delivered and are going to be delivered as quickly as possible, then this important project could benefit from extra funding at this point to ensure that it gets off to the best possible start and that it is implemented as early and as professionally as possible.

There is no doubt that digital health records are a key missing pillar of our health service. They will, if delivered, help our front-line healthcare professionals provide better healthcare and be patient-facing more often. We need to prioritise it, and I am glad that this enabling Bill has finally come to the floor of the Dáil. I hope to see it passed soon, but the real proof of the pudding would be its implementation and delivery of the electronic health records.

Deputy Imelda Munster

As my colleagues said, Sinn Féin will be supporting this Bill because we recognise the importance of digital transformation in the healthcare system to improve patient safety, modernise the health service, improve accountability and efficiency and provide value for money.

The Bill is a very watered down version of what we need, which is to provide basic shared care records that we are told will be built up into a fully digitised system. The HSE was due to start the digital transformation process in 2015, almost ten years ago. A common feature of our health service is Ministers making big announcements and then providing no funding for the programme. Unfortunately, so far this strategy appears to have fallen victim to that. What guarantee can the Government give us to ensure that this is funded and delivered, and built upon? We are two decades behind most European countries. Will the Minister commit to ring-fencing funding for the new digital health framework? Otherwise, it is doomed to fail.

In 2024, the Irish health service is operating a largely paper-based system, with poor communications and connectivity between services. There have been several instances of paper medical records of patients being found in public places, including in my home town of Drogheda. The Government did not support a business case for electronic health records in 2016, in part to see how it worked in the new children's hospital, which was to be a test case for a fully digital hospital. Now we are in 2024 with no electronic health records and, to the Government's shame, no children's hospital either.

Sinn Féin would ring-fence a significant capital budget and deliver unprecedented investment in digital transformation. It is an area that we want to prioritise. This would mean better tools to collect, use and share health information for patients. We would develop a digital portal so that people could see exactly where they stand on waiting lists and manage their own healthcare. This would give autonomy back to the patient for their own healthcare management.

The amount of waste in the HSE is unbelievable. As a member of the Committee of Public Accounts for many years, I am only too aware of that. By investing now, we can save money, improve efficiencies into the future and improve care for patients. At some stage, could the Minister confirm whether the funding is ring-fenced and when digital transformation will be delivered?

Deputy Róisín Shortall

I very much welcome this debate on the Health Information Bill, even if it does feel like Groundhog Day. This piece of legislation is of critical importance to digitising our health service, and we in the Social Democrats are very happy to support it.

Over the years, multiple national policies have committed to delivering ehealth technologies. The promise to revolutionise our health service has yet to be delivered. It is true that this is a complex endeavour, and it will come at a significant financial cost, but there can be no excuse for the repeated failure to prioritise digital healthcare.

In 2024, it is frankly unacceptable that we have still not moved away from pen and paper in so much of our health service. I acknowledge that there have been developments in individual hospitals and GP clinics, but we need these systems to be integrated and to communicate with each other. Records need to follow patients, regardless of the healthcare facility they visit.

It is almost 11 years since the eHealth Strategy for Ireland was published. This 2013 strategy stated that the ICT budget for healthcare in Ireland was approximately 0.85% of total healthcare expenditure. At the time, the EU average was between 2% and 3%. I accept that funding for ehealth and ICT has increased since then, but it has not been in line with increases in the overall health budget. According to the ESRI, between 2017 and 2021 ehealth funding increased from €55 million to €120 million. However, that still only equates to less than 0.8% of the health budget. That is similar to the relative spend prior to the 2013 strategy.

The Department of Public Expenditure, National Development Plan Delivery and Reform has a great deal to answer for in this regard. It seems to need constant reminding that the "R" in its name stands for reform. It does not buy the idea of reform or see itself having any responsibility at all for the promotion and especially the funding of reform in other Departments. A case in point is the long-running saga over electronic health records, EHRs. We discussed this at the health committee in January 2023. When I asked the HSE about progress on electronic health records, I was told that they were not even at the starting line. The main reason for this, was that the Department of Public Expenditure, National Development Plan Delivery and Reform had rejected the business case for EHRs. The business case was submitted in May 2016. The accompanying documents state that a review of the scientific research found that implementing EHRs would lead to a 25% reduction in emergency attendances, a 37%reduction in preventable hospitalisations and a 35% reduction in medication errors. It was a no-brainer.

The estimated cost for a nine-year implementation was said to be between €609 million and €824 million. However, in documents released to the Medical Independent under freedom of information, it was revealed that the Department of Public Expenditure, National Development Plan Delivery and Reform had concerns about funding the project within national development plan ceilings, given the overruns at the new national children's hospital. A January 2019 letter from the assistant secretary in that Department said that it would "be most appropriate to seek Government approval to implement an EHR at the new Children's Hospital first”, following its opening. That was an incredibly short-sighted decision. As we now know, sacrificing the full roll-out of EHRs did not address overruns in the new children's hospital. There is no need to repeat that.

Further reporting in the Medical Independent revealed that in 2022, three years after the EHR business case has been rejected, the HSE board was asked for guidance and strategic direction on ehealth. According to the HSE's chief information officer, the programme was effectively paused. That is a damning indictment of both the Department of Public Expenditure, National Development Plan Delivery and Reform and the Department of Health.

Since the 2016 business case was submitted, eight years have passed. That is almost as long as the expected timeline for full implementation of the ehealth strategy. EHRs are critical to transforming our health service. They have been described as the cornerstone of the ehealth strategy, yet we are only now dealing with the legislation needed to provide a legal basis for them. We still do not have a funding package for the strategy or a timeline. The national roll-out of EHRs would still seem to be some time away.

Other countries are miles ahead of us. Twenty three EU member states now provide access to electronic health records through a centralised access service. Finland has had EHRs since 2007, while Estonia has had them since 2008. Last year, Ireland ranked lowest among OECD countries in digital healthcare provision and digital health readiness. That is not a record the Minister or his predecessors can be proud of.

Notwithstanding the urgent need to digitise our health service, there are a few issues that need to be teased out and clarified on Committee Stage of the Bill. Part Two deals with the "duty to share". During pre-legislative scrutiny, I raised some concerns with respect to confidentiality that still remain to be addressed.

I note that the Bill provides for the HSE to create guidelines on the information to be shared and with whom. More clarity is needed at this stage.

While the Bill states that information sharing must be necessary, relevant and proportionate, how this will be adhered to in practice still needs to be teased out and clarified. I appreciate this will be informed by GDPR, but significant and meaningful engagement with the Data Protection Commissioner will also be vital, in particular to ensure that the principles of data protection, such as transparency, data minimisation and data security, are fully respected.

The definition of "health services provider" in the Bill is also very vague and could cover a vast range of healthcare professionals. We need to ensure that the guidelines are explicitly clear about who should have access to records and on what basis in order to ensure confidentiality from a patient's perspective. This is particularly pertinent in respect of the information that GPs have. The relationship between a patient and their GP is a very personal one. I accept that section 13 provides patients with the right to restrict access to information in their records, but not all people will have the digital literacy or capabilities to exercise such rights.

In 2021, the ESRI recommended the development of specific supports for vulnerable populations to address barriers to understanding ehealth, such as lower digital literacy and language competency. We need to make sure we get this right and bring people with us because any concerns around privacy would undermine public trust in the entire system.

Another area which requires more detailed scrutiny is the secondary use of data. This data will be extremely useful for scientific research, policy making and the development of products and treatments. However, the State is poorly prepared to utilise it. In 2023, a pan-European steering committee was established to assess member states' readiness for implementation of the European Health Data Space. Its report on Ireland stated that infrastructure for secondary use of data will also need to be built almost entirely from scratch and managed by people who are not yet on the payroll. The report went on to say that even the most basic health information, such as the number of patients nationally with chronic diseases like diabetes, is not currently available in Ireland. Again, that underlines how our data systems are shockingly weak and result in additional costs and, of course, major problems when it comes to planning services.

For decades, the fragmented nature of data collection in Ireland has undermined the State’s ability to plan healthcare services effectively and efficiently, and unfortunately this continues to be the case. This is a key reason we need to accelerate the digitisation of healthcare and health data. However, notwithstanding the importance of realising the full potential of secondary use data, we must ensure that there are strict controls around its use, in particular when it comes to private companies. This is an especially pertinent point in the context of the European Health Data Space, which this Bill is informed by. We must have robust ethical and legislative parameters around any commercial involvement in secondary use data.

I fully appreciate that such data at a population level is invaluable in developing potential therapeutics and treatments, and that is very important. However, we must remember that genetic and genomic data is considered a special category of personal data under GDPR, and should be treated as such. This was noted in a 2021 HIQA report on the sharing of health and social care information. Particular concerns were raised about the sharing of genetic data for secondary purposes without consent due to the difficulties in truly anonymising genetic data.

The other issue is that genetic and genomic data convey information not solely on the individual, but also, of course, on their relatives. This means that there is a question over the appropriateness of obtaining consent from a single individual to share their genetic data with a private entity, such as an insurance company. I accept that this is tricky from a legal and ethical perspective, but it certainly requires further scrutiny.

The Minister will remember the 2020 brain tumour research study between Beaumont Hospital and GMI, which highlighted serious failings in our data protection framework. Concerns have also been expressed about the increasingly active role of large technology multinationals in digital healthcare. For big tech companies, healthcare is a huge source of extremely valuable data which can be converted into potential revenue. Given that eHealth Ireland is creating huge demand for its digital infrastructural services, such as cloud space, we must ensure its influence and market power does not override the public interest.

The final issue I wish to raise is that of security. As we become more reliant on digital health, the importance of strong cybersecurity will be even greater. Health data is a prime target for cybercrime. Unfortunately, we know this all too well following the 2021 HSE ransomware attack. This incident showed how easily our whole healthcare system can effectively be brought to its knees. Just one click on a malicious file allowed criminal hackers to access and encrypt the system and move through various hospitals and health centres. In total, they gained access to the personal details of more than 100,000 patients and staff.

The 2021 hack is said to have cost the State at least €144 million. Prior to that, there had been repeated warnings about the inadequacy and vulnerability of the HSE’s digital systems, but these were ignored. Following the breach, in 2022 the Comptroller and Auditor General said that over €650 million will be needed to implement cybersecurity improvements over a seven-year period. While investment has increased in line with the post-incident report recommendations, it is deeply concerning that the new digital health framework is so notably ambiguous about the health services cybersecurity plans.

In a 65-page strategy, the best the Department of Health could do was commit to an evaluation of the resources needed to build our cyber-resilience infrastructure. Such a commitment, three years on from the hack, is unacceptable. If it was not so serious, it would be almost laughable. This problem is not going anywhere. In fact, cyberattacks are going to become more and more frequent. Between January and May, the National Cyber Security Centre, NCSC, had already launched 211 investigations into cyberattacks in Ireland, compared to 309 in all of 2023. We need to get ahead of this. Cybersecurity must be a priority.

The HSE still has not recruited a permanent chief information security officer. That post was supposed to be filled by the end of 2022. I appreciate that there is major competition for talent and salaries for similar roles in the private sector are huge, but the half-hearted commitment of successive governments to ehealth is also part of the problem. This Bill is a step in the right direction, but it is going to take a lot more ambition and imagination to bring Ireland’s health service into the 21st century.

For instance, the new patient app, which is being lauded by this Government and the HSE as a major advancement in ehealth, barely scratches the surface. It is a welcome development, but compared to our peers in Europe it is a very basic initiative. The initial roll-out will not include voluntary hospitals, which account for around a third of all hospitals, including some of the largest.

It is still the case that Wi-Fi is only fully available in 31 the 49 hospitals. I accept that free Wi-Fi is in the process of being rolled out nationwide, but we are told it will be the end of 2025 before all HSE sites have access. We have a long way to go. Ireland is a complete laggard when it comes to ehealth. I appreciate that will not change overnight, but how many more plans will it take before we see real follow-through, instead of piecemeal changes? Sláintecare was clear on the importance of ehealth in enabling reform of our health service. but seven years on it seems like we are only getting started. There can be no more excuses. The ability of our healthcare system to effectively meet patient need depends heavily on the quality of our health information system.

The pandemic exposed the failings in our digital health systems and infrastructure, but it also highlighted the HSE’s ability to quickly develop and implement the use of new technologies. That level of urgency and willingness to change must be harnessed again, because the HSE is capable of transitioning to a digitised health service. The question remains whether this Government is capable of driving that change. At a recent health committee meeting we discussed this and got a general update. We asked about the progress on the digital health strategy. We know about the framework and we know that this legislation will underpin it. However, when we asked a question about EHR, the reply we got was "Oh yes, we have many EHR systems, but we need them to be talking to one another" and my heart sank. The potential of this is enormous. We should not be repeating the mistakes of the past where there was shortsightedness on the part of the Department of Public Expenditure, NDP Delivery and Reform. This is a fantastic opportunity to transform the health service, to enable proper future-proofing of the health service and ensure we have proper services where we need them. We now need the strategy to be implemented as well as for this legislation to be in place.

Deputy Cathal Crowe

A Cheann Comhairle, 80602 is a seven-year-old Hereford cow I have on my farm. Her entire health record is on the Agfood website from the moment she was born up to the current time, including every vaccination withdrawal period and her annual BVD test. Everything is there. I drive a Honda car. Every detail about my car, including every NCT report setting out the percentage performance of the brakes and the wear of tyres, is recorded electronically. Everything is there for my car and the herd of cattle I have at home. It is not the Minister's fault, but it is a crying shame that over many years, we have allowed impressive databases to be built up about the national fleet of vehicles and about cattle and other livestock; yet we have no database that is shareable and digital for patient records for the human species in our hospital systems.

This is good legislation. I am glad that in the programme for Government our party is leading this and trying to have, finally, a digital database of patient records that is transferable and useful when people get to the hospital environment. I am someone who lives in the mid-west and has been through the accident and emergency department there. There have been many debates about its shortcomings. One of the first things that people who arrive in the emergency department interface with is the triage room. They meet a nurse and a team and some basic questions are asked. Those basic questions are fine and essential but not all of them necessarily need to be asked. There are some details no one knows. For example, I do not know my blood type and many people do not. The answers to many questions should be and are available in a litany of paperwork, journals and files that are not collated and brought to a central point. We also have to factor in the patients who are not in a good state when they arrive into accident and emergency departments and are incapable of answering due to concussion, the inability to recall facts or the consumption of alcohol since the start of the evening. There are many reasons that people might not be able to be triaged effectively and passed on to colleagues in the accident and emergency department. To have a digital record for that patient would be invaluable.

At the moment the files are paper and they do not transfer within hospital groups. Any hospital stay I have ever had has been in the mid-west region. There is some semblance of records with some detail of when I was last in hospital, my appointments and so forth. However, if people were to move down from other parts of the country or if I were to move to Dublin, there would not be any exchange of records. That is a flaw to begin with. At a minimum, before we get to a digital base of records, we should at least have some way of transferring files. If a person's habitual address changes, all files relating to that person should be moved to a different health district. A team is leading the digital transformation in the Department of Health and the HSE at the moment. Some of that work should involve assessing whether patients have moved beyond a certain CHO area or health district and whether some of their paper files could be moved as well.

Today is my uncle's first anniversary. He passed away last year from cancer. His name was Tom Crowe and he sat above me here on the first day I sat in Dáil Éireann. He had a wonderful life. He died in his 80th year. Like many people, cancer caught him in the end. It was devastating to hear at some of the hospital visits I accompanied him to that his patient history and the fact that he had been checked out for other forms of cancer were not known. It was just said casually to him. As he was 79 and a casual laid-back person, he mentioned it once when he was being discharged from hospital. He said "Aren't I some man? I already went through this three years ago". Every jaw in the place dropped because nowhere in his patient file was that this man had been investigated for cancer in the past. That is wrong. That is fundamentally wrong. There are a lot of people like my uncle who do not reveal every scintilla of their health information when they go into hospital and for many, that vital information is found out when it is far too late.

I will turn to a point Deputy Shortall mentioned a moment ago: the need to have more resilient data protection and the whole online security base for this. I have no doubt that it will be well managed in the HSE mothership and the Department of Health. However, there are many outposts of the Department. I was a primary school teacher before becoming a TD. I was in a little classroom in Parteen which was an outpost of the larger Department of Education. We were a little spoke in a huge wheel. The desktop computer in the classroom ran on Windows XP, which is software that is probably 16 or 18 years old. Over the years, various teachers, including me, had downloaded software packages. The computer was probably riddled with viruses. On that computer, alongside worksheets and all the nice stuff teachers print out for children during the day, were sensitive records relating to children. That is typical of any classroom in the country. I am not so worried about HSE HQ, the Minister's offices or the mothership of the organisation. I am worried about its outposts because there are many old laptops and personal computers, PCs, that hold very sensitive information and are potentially prone to being hacked or data getting to places we do not want them to go to.

I hope this has changed. I have been to maternity hospitals a few times with my wife. I do not quite know what are the reams of paper records that keep printing out throughout the night. The midwife takes notes on an almost ten-minute basis about how labour is progressing. All those notes are handwritten. A computer churns out a template sheet. The midwife catches those sheets before they hit the ground, because they keep coming out and she or he fills out all the details with a biro. I saw that happen just five years ago. I hope to God it is not still the case. If we are digitising - of course we have to digitise records - surely such practices are from yesteryear and these highly skilled, highly trained and highly valued nurses and midwives should not be spending their entire working day trying to catch the record before it hits the floor to fill in patients' temperature, the time, how many contractions per minute and so on. That kind of detail should also be digitised. It is not only patient records; the diagnostic information also needs to be digitised.

This is good work. Mo cheol thú, a Aire. I hope this progresses and that we get to this point before 2030. The Minister is welcome to look at Herdwatch and all the apps that already work. The Ceann Comhairle has some knowledge of how animal records are quite adept in this country already.

Deputy Ruairí Ó Murchú

Nobody here will disagree that we need digital and electronic health records. That is absolutely essential to delivering an operating health service and improving patient safety. We acknowledge the absolute necessity of ensuring we have all the necessary information, whether specific to a patient or beyond that. Holistic information is required for the data analysis that can provide us with all that is necessary for planning.

The issue is that we are not where we should be. In recent times, people have raised with me concerns regarding the accident and emergency department at Our Lady of Lourdes Hospital. I will be chasing up those issues with the Minister, Deputy Donnelly. Some of those who spoke to me mentioned the confusion arising at times from people searching for pieces of paper, particularly when they are moving from one section of the hospital to another. That does not make any sense in this day and age. Part of the rationale for delaying the full investment in the delivery of electronic health records and a working system was that we were all waiting on the new children's hospital. There is plenty in the public domain in that regard. We just need to get to the end of that but we also need to ensure we deliver this absolutely necessary move as soon as possible.

The Minister of State will not be shocked that I raise an issue about which we have spoken previously. I got some sort of an answer regarding the plan for a ten-bed extension in the Drogheda department of psychiatry. She will agree with me that we need a timeline. I have spoken previously about mental health services and bed provision. In fairness, I obtained information about the positions that currently need to be filled. There are 55 whole-time equivalent vacant posts across all disciplines. We need some element of a plan for how those posts can be delivered.

I previously raised with the Minister, Deputy Donnelly, the issue regarding grade 5 dental patients who would usually have been dealt with in Louth County Hospital. Some of the grade 4 patients, whose cases were not as serious, have been dealt with. I am told that tender processes are being done in regard to a new initiative for the grade 5 patients, who are to be contacted between quarter 4 of 2024 and quarter 1 of 2025. We need some detail on that. Will the Minister of State follow up with the Minister on what this initiative will look like?

In Dundalk, we all welcomed the news that the old Carroll Village shopping centre is to become the primary care centre for which we have been waiting. Planning permission for that is through but we are talking about a need for recruitment in a huge number of disciplines, from mental health right through to disability and community care. We need a timeline for delivery of the centre and making sure all those posts are in place. A building and a plan in regard to that building are not quite what we need.

Where I am based, a huge number of people who have issues with cataracts are able to undergo operations in the North under the cross-border healthcare scheme. However, since 1 September, there has been a drop in funding for patients from €1,928 to €863. I hope there will be a review of all of that. I do not believe the price of operations has been halved.

An Ceann Comhairle

The Deputy's verbal dexterity knows no bounds.

Deputy Mary Butler

He covered some ground, in fairness.

An Ceann Comhairle

He never misses an opportunity. The next speaker is Deputy Naughten.

Deputy Denis Naughten

Is it me or Deputy Flaherty?

An Ceann Comhairle

My apologies. Deputy Flaherty is next.

Deputy Denis Naughten

I must stick by my neighbour.

An Ceann Comhairle

My screen is letting me down.

Deputy Joe Flaherty

I will not take that as a slight, a Cheann Comhairle.

An Ceann Comhairle

The problem is with the technology.

Deputy Mary Butler

This is what we are talking about.

Deputy Joe Flaherty

In the time I came from my office to the Chamber, there was a changing of the guard. In that context, I was going to mention to the Minister, Deputy Donnelly, the Topical Issue I raised last night. However, I will leave it and follow up with him later.

I welcome much of the spirit and intention of this Bill. It places priority focus on the establishment of digital health records and access to health data for care and treatment. Its provisions underpin the Government's roadmap, Digital for Care: A Digital Health Framework for Ireland 2024-2030, and align with the EU's digital decade target of all patients having access to their digital health records by 2030. Crucially, however, there is no provision for an opt-out for patients, unlike in the UK and many EU countries. The Bill would be enhanced by the inclusion of such an opt-out provision.

The Bill will mandate GPs and other healthcare workers to pass every patient's medical records to the State. They will form part of a centralised system that will then be used beyond direct care and without patients' consent. There is more to this than mere privacy and data protection law. The doctrine of confidentiality allows patients to have their medical records confined to those involved in their care. Everybody in this House is steadfast in their agreement that research is important. It must be nurtured and encouraged. However, studies show that patients want to be asked about how their very sensitive data may be used, and for what purpose, beyond their direct care. The Bill, as it stands, would force patients to become involved in research they do not even know about. This could lead to objectionable uses, commercial exploitation and an undermining of trust. Nowadays, research often includes academics and pharmaceutical companies working together. Many of them are working for the common good. However, if a patient chooses to become part of a centralised system, as many will agree to do, studies show that such patients want visibility of their full medical record and not just a summary. They also want to see who has accessed those medical records, including anybody not connected with their direct care. This is also not provided for within the Bill. If GP records are centralised without consent, it may have a chilling effect on patients. Trust in the medical profession will evaporate.

The Netherlands, to give an example, has an opt-out option in its system. The opt-out numbers there are quite high. More than half the population have opted for sharing GP data and more than 60% have opted to share pharmacy or medication data. Given that not everyone receives care, this includes most people who have a need to get their data shared. For people who do not opt into the Dutch system, it is still possible to exchange data directly between health professionals involved in their treatment and when sending referral letters. In the case of our near neighbour, the UK data guardian has provided the UK public with two opt-out choices. Type 1 is for patients who want their GP records to be confined to their GP practice and used only for their direct care. Type 2 offers a similar arrangements for hospitals. The European health data space legislation provides for every EU member country to decide for itself whether it wants to offer an opt-out to patients for secondary use outside of the state.

This Bill does not offer patients in Ireland such flexibility. Will the Minister of State comment on the provision for the information of patients who have died to be uploaded to a centralised electronic health record? I understand this is for research purposes but their family may never know that these records are to be used. There will be a series of amendments to the Bill. I expect one of them will be to provide for comparative effectiveness research, which is a well thought-out and valuable learning healthcare system. However, this is a slippery slope. It will allow for research clinicians to randomise patients to one drug or another if the medical community is unsure which works best. It might be a case of assigning one drug versus a placebo. Patients entering a hospital will think it is the doctor in the ICU making a decision based on their best interests. Often, people are alone when they present at a hospital. Sometimes, if someone is with them, that person may not even be asked for consent.

I agree with the core tenets of the Bill but I have reservations in the absence of an opt-out provision for patients. Nor am I convinced that patients are assured of certainty as to who will access their records. Both are critical oversights. They need to be addressed as the Bill progresses.

An Ceann Comhairle

Now, Deputy Naughten. No. Sorry - I am reading the list wrong again. I call Deputy Darren O'Rourke.

Deputy Darren O'Rourke

Sinn Féin welcomes the Bill and the opportunity it presents. Those of us who engage with friends and counterparts in different European countries are aware of the relationship people have with their medical information. Often, with an app on their phones, they can access lab results or other information in real time. They think nothing of it and have had that technology for almost decades. It is an indication of how far behind we are. I remember meeting, as part of a Sinn Féin delegation back in 2010, 2011, 2012, with the troika, and they said ehealth and digital health were something we had to make progress on. Eventually, we are getting there. I think the Irish Pharmacy Union had its pre-budget submission today. Pharmacists there talked about a hospital information system, a GP information system and a pharmacy information system. None of the systems talk to one other, and it is something we have to address.

In the short time I have, I want to urge caution as regards the development of these systems and their practical implementation, with specific reference to the medical laboratory information system, MedLIS, which has been in development for a long time. There are lessons to be learned in that regard. In 2010, 2015, I think, there were expressions of interest and contracts, there was a commitment to deliver in 2018, and in 2024 we are eventually seeing pilot sites or the system go live in a number of hospitals, including Beaumont. There are lessons to be learned in terms of the scope of those works, the development of that software and its implementation. A Mazars report in 2018 stated the complexity of this was totally underestimated. Now we are in the roll-out phase. I have spoken to senior scientists and people on the front line about this and they say it has the potential to be a recipe for disaster if not properly implemented. I therefore urge the Minister of State and those leading out on the MedLIS project to engage on a site-by-site basis with the management team there. Every setting is different in different ways. In Beaumont, my understanding is that this is adopted in the lab but not in the histology lab because of the nature of the services there. I plead with the Minister of State to ensure that those who are leading out on this project engage on the ground with the scientists who have a practical responsibility for this. If not implemented well, it is a cause for major concern.

An Ceann Comhairle

Deputy Naughten, at last we get to you.

Deputy Mary Butler

Third time lucky.

Deputy Denis Naughten

I am sharing time with Deputy Verona Murphy.

Ireland is a very modern country. We are one of the global exporters of software but, unfortunately, when it comes to the adoption of digital health, we are a laggard. It is important that we acknowledge that part of that problem is down to us in this House and the way we, as politicians, handled the whole PPARS debacle, which had a chilling effect on the development of health services and digital health services in Ireland. I will flag a few issues but I will also do something unusual and provide the Minister of State with some solutions to them as well. Overall, our health service has many challenges. I am absolutely convinced that ehealth has the ability to radically improve the delivery of health services in this country for individuals and the overall performance of our health service. I believe it can dramatically accelerate the delivery of Sláintecare. I fully support both Sláintecare and the principle behind what is before us. Having electronic health records for everyone in the country will enable better care for everyone, make our health system much more efficient and effective and, believe it or not, save money within our health service.

Speaking of the issue of saving money, one of the pieces of low-hanging fruit as to where we could save money is in the management and transfer of medical records. A number of speakers have spoken about paper records and paper records going missing, but there is even the phenomenal cost in managing those, the administration cost. I asked the HSE to provide me with the figure for that cost. The HSE came back to me and said that its record retention policy states that each individual hospital makes its own arrangements for the storage and management of records, so we do not even know the figure for this phenomenal cost on an ongoing basis.

As the Minister knows, speaking of the issue of records, I raised yesterday in the House an issue which really concerns me. It relates to genetic tests that are leaving this country and going to the United States, the UK, France, Spain, Germany and Finland for genomic testing. I raised a specific concern about how the genetic information being gleaned from those samples is being handled and managed. The Minister yesterday dismissed that. I do not think he fully understood the point I was making. Absolutely, if I send a genetic sample away and it goes through either the children's hospital in Crumlin or St. James's Hospital in Dublin for analysis to some of these labs to test for something, they will come back and give me a result. However, all that comes back from those labs is the actual result. The genetic data remains in those jurisdictions, which are outside of GDPR and outside the proposed European health data space. I have no idea how my data is being used for secondary purposes, nor does the HSE, nor do the clinicians here in Ireland. As I said, there is an opportunity to bring those back onto the island and into our own control here as well as providing those results in a far more timely manner.

Not going even as far as the issue of ehealth, and as is known now because every single home in Ireland is getting a fibreoptic cable, there are massive opportunities in terms of telehealth in this country. I have questioned the HSE on the progress it has been making, particularly since Covid, and even within the Minister of State's own remit in the mental health areas. The response I got last June from the HSE is that telecare figures are in their infancy. There are a small number of pilots in use but there are no national figures available. The HSE goes on to mention a few small pilots on remote health monitoring, online support and therapies and remote health consultations. That is an area where we can roll these services out very quickly, improve the quality and responsiveness of our health service, reduce the number of times patients need to travel to meet clinicians, ensure they attend these appointments more frequently and make our health service far more efficient. It is disappointing that we are not being far more proactive in that regard. That does not require a change in the primary legislation we are talking about here.

One of the provisions of this legislation is to deliver on the European health data space. I flagged the need for us to be part of this at European level. One of the primary purposes of that, and probably one of the motivating factors for the enactment of this legislation, is that it will give individuals and healthcare professionals the right to access and use personal health data. It is a positive point but, as the Minister of State knows, people have expressed concerns as to who will actually control that and whether patients will have opt-outs from it. We should circumvent all this. I have a device here in my hand, a smartphone, that can easily hold all my health records. Then I decide who has access to it and what information they have access to, and I carry this around with me.

If I go out onto Kildare Street and an emergency happens for which an ambulance needs to be called, there is no reason the ambulance services would not be able to access the relevant data in my pocket. We should be giving control to individuals by putting the information on a device and then letting the various clinicians read the relevant information. If I am under the care of the mental health services and go into an acute hospital, I do not someone who is curious as to what other medical records there are to be able to access them. That would not happen if I controlled the information on a device.

The Minister of State, Deputy Butler, will turn around and say that is all well and good for me, as a person who uses a smartphone, but what about the people who do not use one? The easy way around that is the vast majority of people who do not use a smartphone have a public services card and those cards contain a chip. That card can be altered to put a second storage device on it or a second health card can be issued. A lot of them already have access to medical cards and so forth. A simple card and chip can hold the exact same data. It can ensure that whether a person is eight months, eight years or 80 years of age, the individual or his or her guardian has control over who accesses that information, rather than any third parties. It is important to do that.

The other thing that would be provided for in terms of the European health data space is the use of medical data for education and scientific research and so forth. This is important. It precludes access to that data for insurance purposes, which is important. That is important because the GDPR, legislation which was introduced when I was in government, has now become the effective global benchmark for personal data but it has its problems, one of which is the issue of medical data. Even when access to that medical data can benefit an individual or a cohort of particular patients, at the moment, because of the way GDPR is interpreted, that information cannot be used, even if it is a large, anonymised pool of data. Cystic fibrosis patients in Ireland are a practical example of this. We cannot develop innovative treatments to target for specific cystic fibrosis conditions or symptoms because we have to get consent before the data is collected. Logistically, you cannot go retrospectively back to do that.

While the European health data space will address this issue from this point forward, it does not deal with the retrospective access issues. We should, in tandem with this legislation, bring forward a further provision to establish either data trusts or data co-operatives. For example, I am a coeliac. I should be able to allow for data that could benefit me or every other coeliac in this country to be used. While some new innovative solution will come forward that was never contemplated at the time I consented to that, I should, at the time of consent, be allowed to consent to have a data trust established. That data trust would consist of a group of my peers, a small number of people in a similar situation to me, who can be consulted, engaged with and asked whether they consent to the use of this information for a specific purpose. The data trust could act on my behalf to do that authorisation, rather than having to go back to every single individual who provided in the data in the first place. It is a way of providing the type of safety net we all want to see in place, but also ensuring the data is used for positive, constructive beneficial research for every single different cohort of patients, whether large or small. Those appointments could easily be regulated and managed through this House in order that there is a democratic element to it and transparency is provided.

I have a real concern about the European health data space and its transnational implications. I have spoken to colleagues internationally in this regard. The proposal will strengthen health data protection and research not just in Europe but across the world. However, it has ramifications and unforeseen consequences for third countries looking towards Europe for innovation and research collaborations. This impact may be felt strongest by certain countries in Africa, many of which lack the existing regulatory frameworks and technological infrastructures needed to comply with the health data space requirements. Looking back at when GDPR in the EU was adopted, a take-it-or-leave-it approach was taken. Third countries which wanted to engage with digital users in Europe had to either comply with GDPR’s expansive data obligations or lose their existing access to the world’s biggest market. While that is all well and good from a commercial point of view, this could have a big negative impact in developing nations in terms of data imperialism. In effect, it would add obstacles to several African nations accessing unique services in Europe because of the way this data space is being interpreted. These extraterritorial powers, which we have seen in the context of GDPR, are now going to be reflected in the European health data space and could jeopardise dynamism, economic growth and health systems for many African countries with this one-size-fits-all approach to health data. This Europeanisation of African health systems could impose unnecessary levels of bureaucracy on an EU-centric health data approach to the delivery of health services in many developing nations. I express severe concern over the approach that is being taken. We need to find a middle ground in this regard. We absolutely need a belt-and-braces approach in Europe, but that should not freeze out developing nations and countries from getting access to innovative solutions in Europe. We do need to look at that. I ask that the Department of Health and the Government articulate that on behalf of these countries.

I do not believe Deputy Verona Murphy, with whom I am sharing time, has arrived yet. There are two other points I wish to raise. The Leas-Cheann Comhairle might let me know if Deputy Murphy arrives.

In the context of cybersecurity issues, the health system is only going to be as good as the weakest link within that digital space. This will not just affect the health system. The way our society works, everything is connected to everything else. We need to have a robust cybersecurity system throughout this country, from the smallest business right through to the social welfare system and our health system. SMEs are currently the weakest link in that regard. I spoke to the Minister for Finance and the Minister for public expenditure and reform yesterday evening and made this point to them. We actually have a good model in this country in terms of the trading online voucher scheme which encourages small businesses to start trading online. A similar scheme should be introduced for small businesses to improve their cybersecurity standards. A 50% grant should be made available to them to enhance their cybersecurity capacity, in terms of both training and technology.

Everything is connected in this country and if there is an attack on one system, it can have repercussions right across our economy. It is important that we take a far more robust approach to cybersecurity right from the weakest link up to our State bodies.

If we are going to use an electronic health service based on connectivity, there is not much point unless there is mobile phone coverage. As the Minister of State knows, most mobile operators in the country are turning off their 3G networks, which will mean some so-called smartphones will no longer be operable. The other problem with switching off the 3G network and moving to 4G and 5G is that 4G and 5G coverage is poorer than 3G coverage. If you live in a rural area – I live in the most rural constituency in Ireland – you will note there are many areas that do not have access to 4G and 5G coverage.

We should be running our health service on a universal network. The emergency services in this country run on the outdated and very expensive TETRA system. This costs €40 million per year for old rope. The telecommunications companies have approached the Government about extending the 4G and 5G network on a geographical basis to every single townland in the country. I would like to see this happen. The companies reckon they could extend the network for an investment of between €50 million and €80 million, which is the cost for two years of the TETRA system, a system that is outdated and has to be replaced. We should negotiate a deal with the companies to hive off part of the network to provide for our emergency services, including the ambulance service, and ensure that if I dial 112 or 999, I will actually have coverage no matter where I am in the country. The emergency services would have access to the network. What is proposed would ensure that anybody seeking the emergency services would have access to them, but it would also ensure that individuals who have their medical records on a mobile phone could allow access by the emergency services should and when they need them.

If we took a more holistic approach to some of these issues rather than just considering them in isolation as health, communications or cyber issues, we could dramatically transform our health service, make it far more responsive and efficient and use the money saved to invest in many of the innovative solutions that are being put on the desk of the Minister of State and the Minister by the staff themselves.

Deputy Jennifer Murnane O'Connor

This Bill prioritises the establishment of the digital health records and access to health data for care and treatment. It will make things better for patients. Previous speakers have spoken about patients. Healthcare is so important for patients. That is our priority. With regard to whatever way we can help, whether through information, addressing records or Bills, it is important that we always put the patient first. That is a priority of the Government.

All patients will have access to their digital health records by 2030. Sometimes, people are worried about the collection of information, but it is important that PPSNs, eircodes, which present a huge issue, and health service identifiers be all linked to patients. How many times have hospitals contacted people with the same name in the same house but who have vastly different ailments? How many times have people contacted me to state their healthcare details were wrong? This Bill would stop this, which is important.

It was a great addition recently for patients to have prescriptions emailed to chemists, enhancing information flow. That is what we need. Many people have said to me they find it to be very beneficial. This is a really good move.

I have to ask about communication, however. Are we communicating what this initiative means to patients and healthcare providers? Doing so is important because the changes are to be big.

I am concerned that we will need specialist staff to implement the changes. Will we be training healthcare professionals in the areas of data science, data privacy and, of course, law?

I welcome the use of digital health records as they will improve the portability of health information for care and treatment, regardless of geographical location. That is a very positive development for rural communities. Deputy Butler, as a rural Minister of State, and I, as a rural TD, will note there have been challenges, particularly given the lack of network coverage. It is important to have the system up and running by 2030.

For people with disabilities, the system will support the provision of integrated care and continuity of care and enhance the quality and experience of care for persons frequently engaging with health and social care services in the acute community setting.

HSE-led digital literacy initiatives will ensure patients with diverse needs are supported in the deployment and adoption of records. That is good to know and so important.

I call for increased communication with those whom the Bill impacts, including patients and healthcare providers, on what they have to do and the costs involved. Cost was brought to my attention recently. Will there be a cost factor? What will be covered under the medical card? Many medical card patients have contacted me about this. We need more communication. There is a lot of talk about this matter, which is important, but there is also a lot of confusion. People wonder whether the initiative will make things worse or better but I firmly believe it is really good. It is important that the Government continue with it.

I ask for an increase in the number of pharmacists in the south east. They are critical to supporting medical teams within our hospitals and to the expansion of the roll-out of the community pharmacists and the very significant sector in the region. In the past few weeks, I have met many pharmacists around Carlow. The Government has extended the powers of pharmacists regarding minor ailments. That is very good and very welcome but I believe pharmacists can do a lot more. With the implementation of this legislation, working with pharmacists and with more communication and information, the initiative will be really good. It is important that the Minister of State – I know how committed she is – and the Minister, Deputy Donnelly, talk to pharmacists. The budget is upcoming. I do not know what is happening with payments or whatever. I know the Minister of State will support any health measures in the budget. That is so important. It is important that all this is put together and that we work together.

What is the position on people who want to opt out and who do not want their medical information given? Under GDPR, there are certain people who do not want to give away their information, particularly medical information. What is the clause in this regard? Can an opt-out happen? If the legislation is implemented and the new arrangement is in place by 2030, with good network coverage, a good system and good communication and information, it will prove to be important. It will be a good change to our health sector.

Deputy Martin Browne

I welcome the opportunity to discuss this Bill because the current system of largely pen-and-paper patient records has been a source of some disappointment and frustration, for clinicians and patients alike. When the general scheme of the Bill was before the Oireachtas committee on health last year, Mr. Muiris O'Connor summed up the matter up with the following comment: "The reality is that, at present, the health information system does not exist at a coherent and co-ordinated national level." This claim is backed up by the 2019 OECD study that found that, comparatively, Ireland lags behind other countries regarding the maturity of health information infrastructure. Other international reports identify the policy actions needed to transform the health information system in Ireland.

I cannot understand why the Government is introducing this Bill so late in its term and, worse still, ten years after the HSE launched the ehealth strategy for Ireland, which I have to note was never funded or implemented. While the Government explained that it was delaying full investment in electronic health records on the basis that it was waiting to see how it worked in the new children's hospital, that delay has wasted five years in progressing digitalisation. The truth is that the Government failed to provide a ring-fenced budget.

Relying largely on a pen-and-paper system serves neither clinicians nor patients well, nor does it allow for the optimum approach to planning for the needs of a changing population. This Bill is one thing, but what about the plans to implement the system? There is no timeline for delivering a comprehensive electronic health record system. What is the funding and delivery plan? How will providers such as GPs be connected and integrated with communities?

Sinn Féin has a strategy with the express ambition of providing patients and clinicians with greater access to health information, improving patient safety, bringing the health service into the 21st century and improving productivity, efficiency and value for money. We will do so by means of a plan that would prioritise and develop secure data sharing across primary care and hospital providers, from referral and waiting list systems to a patient app and remote monitoring. This will be built gradually but consistently as trust is proven in complex health information systems. It will be backed up by a multi-annual funding framework to ensure the creation of a digital transformation fund that will ring-fenced from the health capital budget and driven by the Minister for Health and an assistant secretary in the Department of Health. We have devised a strategy and funding paths supported by accountability. I really must question why this Government is not taking advantage of our vibrant technology sector to develop such a system, opting instead to leave us lagging far behind in the digitalisation of our system. We may be in opposition but, unlike this Government, we have a plan.

An Leas-Cheann Comhairle

We move on to the Rural Independent Group. I call Deputy Mattie McGrath.

Deputy Mattie McGrath

The Health Information Bill 2024 is a step towards modernising healthcare in Ireland. It is a big statement and I welcome the Bill because we badly need to modernise the health system in Ireland. The Health Information Bill 2024, which was published on 19 June last, aims to establish a legal framework for digital health records in Ireland and set guidelines for sharing patient data in the interests of care and treatment. It is a significant step forward in addressing Ireland's lag in digital healthcare compared with other OECD countries. In various surveys, we fail terribly in this regard in comparison with other OECD countries. It is shameful that Ireland is an outlier as regards the digital sector and the digital economy. We have so many data centres, but we have an archaic system that involves paper folders and paper records.

I was in a hospital recently. It seemed ironic to me. As a peace commissioner, I had to sign a form for a patient who is unable to speak. She was able to use the computer, so when I took up my pen, which was blue, she typed "No, we need a black pen". I went to the nurses' station to be told that they do not use black pens, only blue or red. That is all they are allowed. It is interesting what you learn in the course of a day's work. That aside, the situation in the context of the Bill is that if we compare digital healthcare systems across OECD countries, we find that Ireland ranks lowest with regard to several key indicators of digital readiness. That is an embarrassing situation for us to be in.

It is such a nightmare. People should be able to access their records within minutes. When I was in the Chair during the Second Stage debate on this Bill, the Minister admitted that someone recently had to wait six or eight weeks. That is not acceptable. Such information needs to be at people's fingertips in order to allow them to act swiftly and share data in various hospitals in different parts of the country. It should be possible to access data in a timely manner. Ireland is significantly behind when it comes to digital healthcare. It is one of only four EU member states that do not provide citizens with access to centralised health records. There is so much to be done. I am not blaming the staff. They are busy, but the system needs attention.

The whole situation with PPARs, in respect of which €50 million was flushed down the you-know-what, was a disaster. The problem is that nobody is held accountable for any of these situations. It is sad in a democracy when no one is held accountable. The tzars at the time, the Secretary General of the Department and the relevant Ministers, have to be held to account. Accountability has gone out of this House, this Government and this State.

There are potential benefits in improving patient care. Digital health records will enable better co-ordination and continuity of care, leading to improved patient outcomes. That is a given. The Bill will facilitate the use of health information for public interest purposes such as policymaking and regulatory activities and statistics. Regional data sharing is vital.

We will be looking at this and assessing it. Hopefully, we will be putting down amendments because there are weak points in the legislation. I would like to see a timeline as to when it might be enacted. That is another situation. It could pass through the Houses and take forever and a day to be implemented. Our system is creaky and badly broken. We need legislation such as this, and I welcome it. The Rural Independents will submit amendments. I hope that they will be given favourable consideration and that there will be adequate time to discuss them.

An Leas-Cheann Comhairle

There are three speakers scheduled but they are not here. I call Deputy Michael Collins.

Deputy Michael Collins

I am communicating with them but I am not getting through.

The purpose of this Bill is to ensure that digital health records are used safely and effectively to improve healthcare in Ireland. This is an extremely important issue. Maybe we have let it slip in the past number of years. We have not kept up to speed with what was going on around the world.

Something that has been making headlines and raising eyebrows is the cost of Ireland's new children's hospital or, as some like to call it, the billion-euro playground for future doctors. From band aids to billions, our little patients are getting a hospital with a price tag that could make even the most seasoned accountants break into a sweat. That is if the hospital is ever finished. The original cost of the project in 2016 was €650 million. It was supposed to be completed within four years. In 2018, the cost more than doubled to €1.7 billion. Then, in 2022, Covid-19 delayed construction. The cost at that point was estimated at €2.24 billion. No doubt that is going to increase again. According to BAM in the courts, it looks as though the Government is to blame or that the Government is the source of the problem.

When the hospital is eventually built, it is no doubt going to be understaffed as a result of a shortage of doctors and nurses. Our doctors and nurses are educated and then head off to other countries where hospitals are not overstretched or understaffed. We want to try to address the shortage of healthcare professionals. We must increase the salaries of primary care physicians and nurses to ensure that they remain here. We need to provide forgivable interest-free loans for Irish students to study medicine, with an attached agreement that they practise in Ireland for seven years after completing their education. Otherwise, any subsidies must be repaid. We want to subsidise rent or State-owned accommodation for healthcare professionals on low wages for a period of up to five years following entry into service. We must restore funding for school dentists to allow them to provide care in respect of long-term dental problems. We must increase the number of medicines that pharmacists can prescribe in to reduce the pressure on doctors. We met with pharmacists in Dublin earlier today.

Hospital waiting times here are the longest in the EU. Ireland has a shortfall of 1,000 hospital beds according to a study compiled by the ESRI in 2023. The waiting time at accident and emergency at that point was 12 hours. The waiting time for children was higher than 13.5 hours. In July of this year, hospital waiting times here were the longest in our history. We must introduce a new healthcare model to allow for 24-7 treatment. We already know this is possible because private hospitals operate this system. We want to increase funding to small regional hospitals that can provide urgent and routine care to people who do not reside in large cities, which is 45% of the population. This will also alleviate pressure on large hospitals in urban centres.

We want to establish a public-private partnership that helps reduce waiting times for medical care. We must introduce a reimbursement scheme for private hospitals similar to that which obtains in the North. If hospital visits in the North can be reimbursed, I cannot understand why we cannot reimburse them here.

An Leas-Cheann Comhairle

There are three speakers left for the Rural Independent Group. They have four minutes each. Only two speakers are present. I remind Deputies that we are discussing the Health Information Bill 2024.

Deputy Michael Healy-Rae

While I appreciate that we are debating the Health Information Bill 2024, I must informed that House that we have just returned from a presentation about scoliosis patients. Given that heard children of 14 years of age saying that they have been left behind by the State, it would be very wrong to leave that room and not come into the Chamber and acknowledge what is going on in that regard. There were mams, dads and, most importantly, children in the audiovisual room. We had to listen to the Taoiseach - and I hate talking about a person when he is not here - giving a commitment that no child would have to wait more than four months for a scoliosis operation. After seeing the little children who are suffering and in pain come to Dáil Éireann today, it would be wrong of us not to come into the Chamber and acknowledge that. I thank the Leas-Cheann Comhairle for her indulgence.

The Health Information Bill 2024, published in July, aims to establish a legal framework for digital health records in Ireland and to set guidelines for sharing patient data for care and treatment. I am very concerned about one thing. We had the cybersecurity attack a number of years ago, and people's records are very important. However, one thing that has happened in recent years is the introduction of data protection legislation. Sometimes data protection is a way to stonewall people and sometimes it can be a case of individuals saying they do not have to do anything because they can hide behind data protection. We all know that a person's health records are very important and personal to themselves, but that is obvious. Common sense cannot be bought or paid for and must prevail. If medical information needs to be shared when it comes to taking care of a patient, common sense must apply. We have to have safety guidelines and regulations, but people want access to records. I refer, for example, to circumstances where one consultant needs information from another.

Deputies Danny Healy-Rae, Michael Collins and I have been sending people to the North for many years to have their cataracts removed. We should not have to do that. We have to transfer the patients' medical information from here to there in order for people to know exactly what patient is coming before them and the surgery that needs to be performed. It is not just all cataract surgeries; there are many other types of issues. That is only one example of people needing to exchange medical information. When we have patient transfers, whether it is from University Hospital Kerry to Cork, Dublin or, in the case of children, Crumlin, the exchange of patient information is very important. However, we have to ensure that common sense applies and that people do not hide behind data protection.

Deputy Richard O'Donoghue

This Bill is about making sure that digital health records are used safely and effectively to improve healthcare in Ireland. I will begin by referring to data protection. I wrote to the Minister two years ago about the very subject matter of the Bill, namely health records. Sometimes in a hospital a doctor will send on a patient's records and the next thing that happens is correspondence will arrive which states that not all of the records have been received. If a patient is allergic to penicillin or whatever, all the records in that regard should be available. What should also be there is a record of every doctor who sees a patient. This is helpful. Not only would doctors have patients' records, they would also have a record of the doctors who have seen a patient and their diagnoses. This would also lead to accountability among people within the medical profession because there would be a clear record of events. There would be a clear record of when things go right and also a clear record of when they go wrong.

I am always talking about UHL. I am not having a go at the Minister of State in this regard. I have worked well with her, but it is frustrating that after four or five years of my being here, something is only now finally happening. What is proposed in the Bill will help, in a way, in hospitals in terms of accountability across the board. It would also provide protections to doctors who do things properly.

I was in the audiovisual room earlier for the presentation on spina bifida, scoliosis and kyphosis. My son had kyphosis. At 16 years of age, he had an operation and was one of the ones who got the faulty rods. Two years later, the rods snapped and he had to go back into hospital to have them redone. Thankfully, he is healthy, but it happened when he was going into first year in college. Thankfully, we have moved on. He is now on the up and up. That is a case of something happening, being fixed and of moving on to see how we can ensure that it does not happen to someone else. I know an awful lot of people who were not so lucky. It took three months to get one girl ready for her operation. She was on a trolley waiting for the operation when it was cancelled. She was told that the hospital did not have a bed for recovery. She waited another three months and was operated on. Things did not to plan, however, because she was also one of the people who received faulty rods. She now has to go to the UK for treatment.

Again, this all comes back to having a database. However, people have to agree to it. They have to say they are happy to have their data and medical records put on the database. Moreover, there needs to be buy-in on the medical side to the effect that those involved are happy to provide all the information relating to people's medical records. This would set out a roadmap for providing a healthcare system whereby people can know all the facts. Everything that happens throughout a person's life should be managed. No matter who sees you, every healthcare professional should know how they can help.

This is a good Bill. I would like to see something like what is proposed as long as people sign up to it and want it. There should be an opt-in and an opt-out.

Deputy Danny Healy-Rae

I, too, welcome this Bill. Ireland ranks lowest among OECD countries in its ability to link and access data. This Health Information Bill represents a critical step towards modernising Ireland's healthcare system by providing a legal basis for digital health records and facilitating the sharing of patient data. The Bill aims to improve patient care and bring Ireland into line with international standards. This is only one small cog in the wheel, and it is very important, but there are so many other things. It is heartbreaking.

I was also in the audiovisual room with the scoliosis patients. It is terrible to see the way they have been neglected. I sat here before the Minister of State's party leader, the then Taoiseach, Deputy Micheál Martin, in 2022. He got cross with me when I asked him when €5 million that had been promised was going to be made available . Since then, we have had terrible cases, including that of Liam Quinn in Kerry, involving people being left waiting. Fortunately, Mr. Quinn had his operation last June after so many false dawns. It is great to know that he is improving a little and the difference the operation the operation has made. He can now eat and is improving daily. We should let any of the children in the audiovisual room suffer any longer. I ask the Minister of State to make sure they do not suffer.

I know the Taoiseach, the Tánaiste, the President and the Minister, Deputy Ryan, are all over in New York and elsewhere.

It is here in that room they should be today, and I make no apologies for saying that. I know it is hard for people to divide their time but they need to see that. I ask the Minister of State to make sure they see what happened in the audiovisual room today.

I had occasion last weekend to be in a hospital with one of my very good friends who was taken ill. I see what the nurses are going through and the way they are writing everything down. It is written down twice or three times. In addition to caring for the patient, there is the way they meticulously take down data about the patient so it is there for the next shift or for the next doctor to see. Is there any way that could be speeded up? Would there be any way that maybe you do not have to be a nurse to take down those records? That is what I am trying to say. There should be clerical staff there to help the nurses because in the middle of the night, those nurses are working alone trying to take down the data, mind the patient, mind the people who are with the patient and see that the doctors come in on time or whatever. They are under savage pressure. Any way that would improve their recording of data would be very helpful. I ask the Minister of State to look into that as well because it is very important.

The other thing I am concerned about is data theft, cybersecurity breaches, etc. I wonder if patients' records could be compromised or obliterated as a result of something like what is proposed. There is still need for information to be written down as well in order to ensure that we can go back if a breach or something like that happens. Of course, the patient and the family need to give their agreement and written understanding to what is happening.

Deputy Denise Mitchell

As my colleagues have said, we are happy to support this Bill, which will seek to create digital health records for the first time. It would create much-needed streamlining in our health system.

My only criticism is that we are only starting the process now. We have been a long time talking about the need for digital health records and I imagine there are health staff across this State who are only delighted to see this Bill today. It is crazy that in 2024 we are still so heavily reliant on a pen-and-paper system of administration. We are already miles behind our European counterparts and we need to catch up fast. I hope this Bill goes some way to creating more time for staff to deal with patients and reduces time spent dealing with complex paper systems.

While the Bill is very welcome, we must still be mindful of people's right to privacy when it comes to sensitive health records. I hope that any data protection impact assessment carried out in line with section 10 is done relatively quickly in order that we can get this rolled out as soon as possible.

Section 12 contains a provision to withhold information from a patient where the medical professional believes that there is potential to cause serious harm. Will the Minister of State could explain the thinking here and the types of scenarios that are being legislated for? I have a similar question in respect of section 13. Again, what type of scenario the Minister is trying to pre-empt in the latter section?

Has the Minister received an estimated cost to the taxpayer for this entire project? What kind of timeframe are we looking at? People will be wondering about the amount of money involved and how quickly what is proposed can be rolled out. We all acknowledge that it is a massive job of work. Legislation is only the starting point.

In addition to the questions on how much it will cost and how long it will take, there are also questions around implementation. We need to know how the Minister intends to support and bring GPs and community-based services along with him in this process.

As already stated, we welcome the Bill. We are happy to support it, but I would really appreciate some clarity on the questions I have posed. I apologise to the Minister of State because I have to leave. I will not be in the Chamber when she replies but I will be watching.

Deputy Thomas Pringle

Overall, I welcome this Bill and the intention to introduce digital health records to our healthcare service. There is no doubt that we lag miles behind other EU and OECD countries with respect to digital healthcare. Ireland is currently ranked lowest of all OECD countries in digital health readiness and is one of just four member states that does not provide its citizens with access to electronic health records through a centralised access service. People should have access to their medical records. The creation of a digital health record will help to ensure that they have access to important information that relates to them.

We can all agree that the healthcare system in this country is broken and in desperate need of serious upgrade and overhaul. Nearly a year ago, 78 GPs from Donegal wrote a letter to Minister for Health, Deputy Donnelly, stating that they also believe the system is broken and that they no longer have "faith that the current system can be fixed and appropriately managed without outside intervention, support and resources". They highlighted their concerns regarding timely access to care for their patients in Letterkenny University Hospital and I have no doubt that improvements in our digital health and an introduction of a digital health record will improve access to care given that it has the potential to provide accurate, up-to-date information about patients and would significantly reduce the administrative burden on hospitals and other healthcare providers.

It has been reported that fewer than two in five people in Ireland are satisfied with the public health system and it is not hard to see why. I have a few issues with this legislation, however - and very serious ones - so I hope that the Minister takes these into consideration when progressing it.

First, it is hard to see how we would have the resources and infrastructure to actually deliver on this legislation once it is enacted. I am sure it is going to require significant funding to deliver digital health in Ireland and if that is the case then it is vital that we make sure that public money is spent wisely. Unfortunately, this Government has a very poor track record of spending wisely or sensibly. The €2.2 billion for the children’s hospital comes to mind, as well as the €336,000 for the bike shed and the €1.4 million for the copper-roofed security hut at the Merrion Square entrance at the back of Leinster House, details relating to which were just revealed at today’s meeting of the finance committee. I am also reminded of the time and money we wasted on trying to introduce electronic voting 20 years ago. Some €54 million was spent on faulty electronic voting machines, only for them to be scrapped almost as quickly as they were introduced.

Put simply, I do not trust this Government’s ability to handle the level of investment that digitising the health service would require and I do not doubt that it would take this opportunity to once again look after friends and private contractors at a ridiculous price. I am certain the public feels the same way.

This legislation is designed to bring us into line with our obligations under the European health data space regulation, which was due to enter into force this autumn. That is interesting in and of itself because with most European regulations, it is about nine or ten years after they have been introduced that we actually look at implementing them. What is the big rush to ensure that this is implemented now? I question whether we have the infrastructure and systems in place to ensure that what is envisioned will be put in place in such a short timeframe.

In regard to the European health data space regulation, I echo the concerns of the Irish Council for Civil Liberties. The regulation in question creates the possibility to use health data for secondary purposes beyond providing health services to individuals. This opens up the opportunity to use health data in the public interest, such as development of public policy but also perhaps for sale to private interest or, as the Government of Ireland works, to give the private interest the information for free. However, the wording in this regard is not precise and allows for a broad range of uses that risk fundamental rights. The Minister needs to ensure that this is adequately addressed before this legislation is allowed to progress. I urge him to engage fully on Committee Stage and ensure that the relevant organisations are given the opportunity to contribute.

The Minister must also ensure both compliance with data protection regulations and that our citizens’ health data is as protected and secure as possible. This means ensuring that apps are not required for people to access their digital health records either. Apps are not a safe or secure way for people to access such private and sensitive information and I would oppose this suggestion completely.

I also have concerns regarding reciprocal arrangements with other jurisdictions. I understand the need to share information to healthcare providers in the North, for example. I have many constituents in Donegal who would benefit greatly from their medical records being accessible to healthcare providers in the North, given that we are a Border county. However, we must be strict on our terms and the purposes for which this information could be used should be extremely limited.

Obviously, the 2021 HSE cyberattack is still a matter of concern. I do not wish to scaremonger in any way. Ireland is leading in terms of cybersecurity practice, but we know health is a prime target for cybercriminals. Cyberattacks are not only extremely costly, they can also make our citizens feel violated and vulnerable.

This is something that needs to be fleshed out and to receive serious consideration going forward.

Lastly, I wonder if we have sufficient Internet connectivity for a national digital health system. The truth is that we do not in Donegal. I have raised this many times, but there are large parts of Donegal that are still without fibre broadband. It is one of the many ways that we remain the forgotten county. The sad reality is that Donegal will continue to be a laggard if significant investment into communications infrastructure and healthcare are not prioritised.

I suggest again that there need to be strong protections in this legislation. I can see that the information that is gathered through this legislation will be wide open to abuse. Unfortunately, history has shown that this will happen. We need to be careful to make sure that does not happen and protections need to be in place.

Deputy Violet-Anne Wynne

I welcome this Bill and the opportunity to contribute. I might be a little cheeky and say that it is great to have more than two minutes or even a shared minute to be able to contribute to such an important Bill. I heard the Minister's opening statement. While it is welcome, as this has been desperately required for the last number of years and we all know that has been the case, the reality is that we have been laggards on this important legislation, which is necessary for a fully functioning health service. It is an important, integral piece of the health service jigsaw. We know that it should lead to better communications for health services and better outcomes for patients, never mind the fact that it should hopefully ensure that records are safe and secure. That is just as important as access. I feel that needs to be said.

We need this, as the Minister said, to be transformative and to assist healthcare workers in saving lives, but also to lead to tangible health benefits. We know about the pressures that our national heroes, our healthcare workers, are dealing with daily. This will be positive for them to hear. The lack of detail and timelines was not helpful. It possibly points to an unfortunate level of tardiness, if I can be as bold to say it, that exists within Government when it comes to proposals and policy design. The slow process is well and truly demonstrated. This is not one of those mechanisms that can be allowed to be delivered in such a slow manner. The fact that it has not been prioritised is an indictment and points to the failures to grapple with the challenges that we currently face in our health service.

The Minister mentioned that there will be a pilot scheme and that this is planned for the new children's hospital, for whenever that is to be finished. I ask the Minister of State, Deputy Butler, why that is the case. We still do not have a definitive date for when this hospital will actually open. That pushes out running the pilot. Why would Government take such a decision? We should be rolling out the pilot as soon as possible with no delays and no waiting. That has to be questioned. We must get answers to that today. I am sure there are many ideal locations for this new app to be rolled out in a pilot scheme. I believe delaying it until the opening of the already delayed children's hospital is, in fact, an act of hypocrisy for a Government which continues to advocate that it is taking decisive actions for patients.

Would it not be a more sensible decision to pick a smaller hospital setting such as Ennis General Hospital? The Minister of State might have heard my statement yesterday where I equated Ennis in County Clare, in the Government's eyes, to the poor cousin's aunt, particularly when it comes to resourcing and funding. I invite the Government to take a stance and prove the likes of me wrong by choosing Ennis General Hospital for this positive new pilot and app that has been explained. It is often only considered when it comes to bolstering University Hospital Limerick and we are consistently stripped of our elective procedure capability to offset the overcrowding in UHL. We are also hearing most recently that it is impacting our assessment unit, which is also concerning, because it has been a great pathway for people to be able to access healthcare and treatment in County Clare. The unit does fantastic work and is consistently adjusting its roles and responsibilities. That is not an easy task by any standard. Can we show appreciation for all that those people do with the very little that they have? I take the opportunity to thank them for all the hard work they do on the ground, with the high pressures they face.

I also refer to the elephant in the room on this proposal on the new app. It goes without saying but I clearly feel the need to say that I insist that all due diligence be exercised before we roll out the use of this app. As we have learned from the recent publication of the Clarke report, when it came to the alert system being used in UHL, there were a number of mishaps and problems with the alert system that were undoubtedly obvious to staff. I assume, and all I can do here today is make an assumption, that the issue was brought to the relevant personnel's attention, but no action was taken. I mention this as a precautionary comment. I hope that due diligence will be exercised to its fullest before it is rolled out.

It is important to mention that the shortfalls left the hospital vulnerable, but most importantly, it left the patients vulnerable. I want it on the record that I expect and know that all of the patients in the mid-west region expect and will demand that proper and concise due diligence be exercised, especially before it is heavily relied on. Eleven years since the e-health strategy was published, here we are. We can afford the public their frustrations because the Government and previous governments seem to take the meaning of the slow process to a whole new level. I find it quite embarrassing. People say that it is only in Ireland that these things happen or that it is pure Irish to speak of constant delays and kicking the can down the road, but this is a clear example of why those statements would be made.

Two interns started in my office yesterday, Lindsey and John, who are both from the United States. They pointed out that they have access to all their health records and insurance on their phones. They were perplexed about the situation in this country. They had hoped that I would be able to bring what we collected from the stationery department, which was a massive box of paper, to demonstrate visually what we are contending with in Ireland. Unfortunately, briefings did not allow for me to be able to carry that box here today. It was an important comment coming from both of those interns.

We have a fantastic opportunity which is not to be missed but it is important to have a strategy in place. I refer to my own experience, when I had baby Collins. The GP who was in Kilrush was replaced by a temporary locum and then another temporary locum. I cannot remember the reason but I required something from the GP about the birth of baby Collins. He obviously was not the GP I was attending, so he required proof of the baby's birth. I tried to point him towards the news but he wanted proper proof, so I rang the maternity hospital, which was fantastic and well able to assist me, but it outlined that my file was no longer on site at the hospital. Once the baby is born, after a period of time, files are relocated to a central storage area. It perplexed me at the time that this was the case. I was left with my mind boggled. The hospital got me access to the information as quickly as possible but it just seems unnecessary. What we have here is possibly reactionary politics at play after an issue has arisen. We need to see more preventative measures and politics brought to the fore and to be more responsive.

Minister of State at the Department of Health (Deputy Mary Butler)

I thank the Members of this House for their contributions to the debate and I look forward to their support as this Bill is further considered on Committee Stage. Throughout the development of the new digital health framework and the Health Information Bill, we have listened carefully to the voices of patients, professionals and other stakeholders across our health services. It is clear that patients want online access to their health records.

By and large, the public is ready to embrace digital in health and the law is playing catch-up in this area. The move to digital health records will undoubtedly be a cultural shift. Successful implementation must be underpinned by engagement, transparency and robust data protection measures. In this regard, I particularly thank the Data Protection Commission for its detailed engagement on the provisions of the Bill throughout the drafting process. Consultation with the Data Protection Commission is a key feature of the Bill and we remain actively engaged with the commission in our implementation of digital healthcare.

The Minister for Health earlier outlined the major initiatives coming on stream in respect of digital healthcare. Our transformation to digital health and social care services is being rolled out in three phases, the first of which is nearly complete. Before the end of the year, all patients can have a patient app which is a safe, secure and convenient way to access their personal health information. Next year, we will roll out the national shared care record. This will enable health services to gather patient data from primary, community and acute settings and present it as a unified digital health record. Patients and clinicians will access the data via the patient app and a secure clinical portal. For the first time, everyone involved in a patient's care will have access to the same information in a timely manner. The goal of the third phase is an electronic health record. This will provide a complete digital health record of a patient's health journey recorded by healthcare professionals across all health and social care settings. It will allow for automation of the patient pathway in various care settings; for example, referrals, ordering of diagnostics and lab tests. The phased approach provides a balance between the need to make progress in digitising patient health records while managing the scale, complexity and risk involved in the roll-out of a national electronic health record.

Ultimately, the ambition is to provide a single digital health record for each of us which will be core to achieving improved health outcomes and to supporting health staff in delivering high-quality care. I acknowledge that much is asked of the HSE in this legislation but it gives the HSE a clear basis in law to achieve this vital step forward in our organisation of health information. With legal authority comes great responsibility but also opportunity. The Bill will enable the HSE to connect health information and modernise our delivery of person-centred healthcare. I commend the great progress by the HSE in the HSE live online advice services. These digital developments will allow for big steps forward in the delivery of personalised care and health advice. I assure the House that the Government is committed to the delivery of integrated and effective health and social care services. We look forward to working closely with the HSE and all health and social care services to improve patient care and population health outcomes. I thank Deputies again for their contributions on the introduction of this Bill to this House and look forward to working with colleagues across the House to progress this important legislation through the Dáil, on Committee Stage and through the Seanad as quickly as possible.

Question put and agreed to.

Dáil Éireann debate - Wednesday, 25 Sep 2024

Health Information Bill 2024: Second Stage (Resumed)

Dáil Éireann debate -
Wednesday, 25 Sep 2024