Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael) | Oireachtas source

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

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

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

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

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