Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

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.

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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.

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