I support those calls in relation to the voluntary hospitals and the requirement the right information systems are put in place and that we have robust systems and the same systems across all of our hospitals and all of our health services. We are dealing with very large sums of public money. I believe €5 billion goes into voluntary hospitals. We need to ensure there are levels of accountability and transparency there. That is required so I support the calls from others around that and support the Minister's work in that area. If we require additional amendments to this Bill to require voluntary hospitals put these systems in place, does the Minister intend to bring forward more amendments in that regard?

Sentiment score: 0.30

I move amendment No. 4: In page 9, between lines 30 and 31, to insert the following: “Review of data protection compliance 7.The Minister shall, within 18 months of the passing of this Act, prepare and lay a report before both Houses of the Oireachtas evaluating compliance with relevant data protection legislation and regulations in the collection, usage, and storage of patient health data.”. This is long overdue and much needed legislation that will provide for a legal basis for electronic health records and patient information sharing. More generally, it represents a critical step towards digitising our health services and this is crucially important. Digitisation is an area the health committee is quite interested in and one we will engage with the Department on and engage on during a public session. However, it is important to note the process of transforming our health service from paper files to digital files comes not just with benefits but also with risks. Privacy and security risks are unavoidable but the majority can be prevented by having the right safeguards in place. I accept that safeguards are being put in place via the Bill but ehealth represents a big change for our health service that will undoubtedly have teething problems. Significant and meaningful ongoing engagement with the Data Protection Commissioner will be crucial and more tangible action is needed given the sensitivity of the data concerned. This is why I believe it is essential a review is carried out early and that it is put on a statutory footing. We need to be sure the safeguards put in place are working effectively and that we identify areas for improvement early because the opportunities for breaches will increase as we digitise, particularly as new systems are implemented. As we all know, healthcare data is a prime target for a cyber attack. We should not discount the impact on AI on future healthcare provision either. I also have a concern regarding the level of preparedness in respect of the secondary use of data. Such use is vital for scientific research, policymaking and the development of treatments, but the State is poorly prepared to utilise it. In 2023, a pan-European steering committee stated that Ireland's infrastructure for secondary use of data will need to be built almost entirely from scratch and will be managed by people who are not yet on the payroll. I accept that the secondary use of data will be dealt with in future legislation, but all of these issues are interlinked. If we do not put these reviews on a statutory footing from day one, then I am not convinced they will happen. For those reasons, I am of the view that a review of data collection usage and storage needs to happen within 18 months.

Sentiment score: 0.14

I move amendment No. 5: “Review of accessibility of health data 7. The Minister shall, within two years of the passing of this Act, prepare and lay a report before both Houses of the Oireachtas outlining - (a) the steps taken to assist persons with lower digital literacy or connectivity issues to access their health data and exercise their right to restrict access to information, in accordance with the legislation, and (b) the specific supports made available to vulnerable populations to address barriers to understanding and utilising digital health.”. This amendment relates to the review of the accessibility of the data. While the digitalisation of our health service is essential, it does risk deepening the digital divide. Digital literacy, access to technology and language barriers present challenges for some groups, such as, for example, older people, lower income households or migrant groups. The inability of certain groups to access their health data in line with legislation should be a real cause for concern. In 2021, the ESRI recommended the development of specific supports for vulnerable populations in order to address barriers to understanding ehealth, such as lower digital literacy and language competency. I accept that these supports may not be set down in legislation, but that does not minimise their importance. The Sláintecare 2025+ plan identifies health literacy as an issue and refers to developing a health literacy toolkit. That is very welcome, but I encourage the Minister to ensure there is a similar focus on digital health literacy. Equally, it is important to ensure that patients can exercise their rights to restrict access to their healthcare data. This is provided for in the Bill, as mentioned, but some people will need additional support in exercising those rights. With this in mind, I am of the view that it is reasonable to assess these issues within two years of the enactment of this legislation. We cannot allow some people to be left behind as we digitalise our health services. We have to bring people with us to ensure that public trust in the entire system is not undermined.

Sentiment score: 0.05