Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context

I move: "That the Bill be now read a Second Time."

I am very pleased to be here this afternoon to introduce the Health Information Bill 2024 to Dáil Éireann. The Bill may be very technical in nature. It is, however, a landmark piece of legislation and it is going to help transform the services that are provided to patients. This Bill is the legal foundation for one of the most important health reforms in years: a digital health service.

I wish to take a moment to thank officials for getting us to this point. This is a big and complex Bill. It had to be rewritten in light of EU laws, strategies and changes. It has been a long time in the making. It has been considered at length and what we have before us today represents the efforts of many people over several years.

Earlier this year, I published our new ehealth plan. It’s a six-year approach to rolling out ehealth across the country. I have already allocated start-up funding for the plan. This includes €155 million in capital funding and €270 million in recurring funding. We now have the plan, the ambition and the initial funding to bring services for patients in Ireland into the modern digital era. This Bill is the legislation that all of this work is going to be built on.

The Health Information Bill provides a clear legal framework to enable vital initiatives in digital health and to ensure the appropriate sharing of health information for the delivery of improved care and treatment for patients. It is a critical step in ensuring Ireland has a fit-for-purpose health information system. What does that mean? It means better patient care. It means more control for patients. It means quicker access for patients. It means more responsive care for patients. It means more cost-effective patient care on behalf of the Irish taxpayer.

I speak with healthcare workers throughout the country all the time and better digital supports is probably the single most common issue they raise with me. They know that investing in digital has the ability to transform the work they do for their patients every day. Our healthcare workers need information to flow better. They need to spend less time chasing reports and have more time to treat patients. They need to know the medical history of the people they are treating. They need access to previous scans, medication and treatments.

That is partly what this Bill is about. It is also about empowering all of us as patients. People need access to their own health information. We want people to be able to access their own letters, diagnostics, prescriptions and treatments. The EU’s digital decade programme sets an ambitious target. It is a target that everyone in the EU, all EU citizens, will have access to their own electronic health records. They have set the target for 2030, a little over five years from now. An assessment earlier this year of EU countries’ progress towards this ambitious target unfortunately shows Ireland to be an outlier. Only 11% of the population score in the online records review that was done. That is just one of the reasons why we need this Bill and it is why we have launched a new ehealth plan for Ireland.

The Bill provides for the best-practice use of eircodes and PPSNs to uniquely identify patients. This is in line with national digital strategy. These stronger identification processes will help enhance patient safety, security of access and data linkage. The Bill’s provisions on the primary use of health information - that is, for care and treatment - are aligned with the provisions of the European health data space regulation that is due to come into force before the end of the year. The creation of digital health records will also provide valuable population-based datasets. What is the point of that? It will better enable us to carry out a lot of important functions around where we should deploy healthcare services, where there are particularly high levels of chronic or other diseases, and where there are other gaps in services or other requirements in terms of really holistic, full, end-to-end healthcare provision for people.

In time, the data from the digital health records will be made available to a broader range of users, including researchers. This will be under governance structures of a national health data access body, which is provided for in the European regulation. The Bill also strengthens the provision of health information to the HSE from bodies across the health services. This includes voluntary and private providers, and it is for important public-interest purposes which obviously fall within the remit of the HSE.

Our transformation to a digital health and social care service is being rolled out in three phases and I am glad to say the first of those three phases is nearly complete.

Before the end of the year all patients will be able to have a patient app. That is a first, modest but important step. This will provide a safe, secure and convenient way for all of us to be able to access our own personal health information or, if people get into a situation whereby they cannot convey their own health information, it will allow the healthcare provider or the treating clinician to be able to access that.

Next year we will take a really important step. We are rolling out what is called the national shared care record. This will help the health service to gather patient data from primary, community and acute care and present it as one single digital health record. From the patients' and public's perspective, what is happening next year will look and feel, quite rightly, like a big step forward. The plan is that, by the end of next year, we will have moved from the patient app, which we should all have in the coming months, to a record with much deeper personal health information pulled from our GP, community, pharmacy and hospital care. It will make a big difference. It means that individuals will be able to access their own care on their own phone or computer. It also means, critically, that a clinician can access all of this. By the end of next year, if any of us are going into a hospital, the treating clinician should be able to access this record and see what diagnostics, scans, GP consultations, other active treatments and community care we have had. It will make a significant difference in making care better, more responsive and quicker for people.

The third phase is the biggest and most expensive piece of work. That will move us to what is called an electronic health record. This essentially becomes digitisation not just of the patient information but of the patient's interaction with our health services. It allows, for example, for automating referrals, ordering of diagnostics, lab tests, check-ups and so on. We are taking this phased approach to try to find a balance between the need to make progress on the digital side while at the same time managing a large-scale, complex and high-risk project. I have taken time to speak with health ministers and officials in different countries around the world. We have spoken with the Canadians, Australians, Brits and others. They all emphasise that these are big, complex, difficult projects. Rather than trying to do everything at once, we decided we wanted to take a phased approach. We will take a first modest step, which is the patient app, then next do what is probably the biggest change for the patient, including all of us, which will be the shared care record, and thirdly, when those two important things are in place, we will do the back office digitisation, which will ultimately make a significant difference, critically for efficient, effective, timely healthcare.

I will now provide a brief explanation of the different sections of the Bill. There are four Parts to the Bill and 23 sections. I will run through those now. Part 1 is for the preliminary and general provisions and contains sections 1 to 6, inclusive. Section 1 contains standard provisions in relation to the Short Title and commencement. Section 2 provides definitions of important terms used in the Bill. Section 3 is a standard provision for regulation-making powers for the Minister. Section 4 is a standard provision setting out the process for the service of notices and documents such as requests made under the Bill. Section 5 is a standard provision that any expenditure in relation to the Act is subject to the Estimates process. Section 6 provides that the operation of the Act must be reviewed within five years.