Health Information Bill 2024: Committee Stage
Committee Stage of the Health Information Bill 2024 focused on expanding the HSE’s power to request and use health information for public interest purposes, especially service planning, performance management and the rollout of electronic health records. The Minister said the amendments would improve clarity, strengthen data-sharing, and support integrated financial management and wider digital health reforms, while noting progress with some hospitals and private providers. Senator Aubrey McCarthy pressed an amendment seeking a report on mental health confidentiality and family access to records, but the Minister declined to accept it, citing broader legal and GDPR issues.
No. 61 of 2024 ›
Amendments Nos. 1, 2, 5, 7 and 8 are related and may be discussed together by agreement. Is that agreed? Agreed.
Comment on this
These amendments relate to the power of the HSE under the Bill to request health information for important public interest purposes beyond care and treatment. On Second Stage, I spoke about how we are seeking to transform the culture of information sharing in the health service. Part 4 of the Bill sets out a number of specified public interest purposes, including service planning and performance management, in respect of which the HSE can request and receive health information from entities across the health sector. Senators will recall that we had a conversation about the sharing of information between private hospitals. They will also will recall their dissatisfaction with a private hospital not having shared information to enable the State to comply with its European regulatory obligations. I am happy to confirm that this private hospital has now enthusiastically agreed to share information, as appropriate, and is engaging with the Department of Health in that regard, which is very good news.
Nevertheless, we proceed with the Bill in the context of all the other cases on which we need to share information. That is the purpose of these amendments. What is proposed will support greater and more effective use of health information and is, therefore, a critical step in moving beyond our current, more fragmented approach to information sharing towards a more transparent and accessible view of the health system.
Amendment No. 1 relates to a change within the definition of health information. It will provide additional clarity on what information is in scope under that heading. The amendment clarifies that the definition of health information includes information relating to the provision and evaluation of health services. It will ensure there is even greater clarity as to the type of information the HSE can request under Part 4 of the Bill and for what purposes, namely, public interest purposes rather than to its statutory remit. Of course, this includes the need to secure the most beneficial, effective and efficient use of resources.
Amendment No. 2 is a consequential amendment arising from that amendment to the definition of health information.
Amendment No. 5 relates to the power of the HSE to use the electronic health record for specified public interest purposes. As I outlined on Second Stage, there are a number of critical building blocks on the path to full digitalisation of the health records. One is the patient app, which we have discussed. I am told there are over 250,000 downloads of that app. The second is the national shared care record. The HSE began rolling that out in the Waterford-Wexford region last year and that pilot will inform the phased, nationwide roll-out throughout 2026 and 2027.
I am pleased that last month, I secured Government approval for the HSE to begin the procurement phase for a national electronic health record. Electronic health records will ensure that the right information is available in the right place and at the right time, in line with the Sláintecare vision for integrated care. They will also provide patients with greater access to control over their personal health data. The information contained in the electronic health records will also provide – this is important – valuable, population-based data sets that will enhance the HSE’s ability to carry out core functions around service planning and management, while also driving important efficiencies. The amendment provides further clarity in that regard. For the avoidance of doubt, the HSE may use the electronic health record for a number of specified public interest purposes, including for the purposes of integrated service planning and the efficient and effective use of resources. This is a recognition of the value of electronic healthcare records not only for care and treatment but for greater and more effective, evidence-based decision-making in our healthcare system.
Amendment No. 7 seeks to clarify the process for the sharing of health information by relevant persons in response to a request from the HSE. That amendment removes potentially inefficient criteria for sharing, acknowledging that sections 22 and 24 already provide a number of processing and procedural safeguards with regard to the HSE’s use of the power to mandate the provision of health information, including proportionality, data minimisation, purpose limitation and transparency measures.
Amendment No. 8 further defines the purposes for which the HSE can request information from so-called relevant persons. They are in identical terms to amendment No. 5. Under the Bill, relevant persons include section 38 and 39 bodies and private providers with which the HSE has entered into an arrangement to provide health services. That is quite extensive and important. The amendment, along with previous amendments just discussed, recognises the huge value and potential of information when we have the full picture of where resources are and how they are being used for the benefit of both patients and the taxpayer. It moves beyond our current, more fragmented and siloed approach to health information management that, unfortunately, has frustrated the development of evidence-based policy and practice in Irish healthcare.
The amendments will clarify more precisely the duty of health service providers to comply with requests from the HSE and share health information as necessary, including for the purposes of integrated service planning and the efficient and effective use of resources. That relates most particularly, but not limited, to integrated financial management systems.
Senators will recall that I spoke of my frustration about the culture of not sharing and the obstacles to information that had been in place for some time. I am pleased that I can report not just progress in respect of the private service provider, but also some important updates with regard to the implementation of the integrated financial management system, IFMS, which has been the subject of great interest both in this House and at the public accounts committee, which sits elsewhere on this campus. The implementation of the integrated financial management system at the first two voluntary section 38 hospitals, St. James’s Hospital and Tallaght University Hospital, is progressing as planned, with strong local engagement. I thank them for that. The resourcing and detailed project plans are in place. That is good news and progress. I expect all of the other section 38 hospitals to engage in the same way when it is their turn.
An interim arrangement is also operating during 2026 whereby voluntary hospitals submit monthly financial data for upload to IFMS as the single national system for monthly financial reporting, pending the full implementation across all of the section 38 hospitals.
I am also pleased to report that there has been renewed engagement in respect of the requirements under the EU statistical regulation, which I referenced on Second Stage. I might come back to that at a later stage.
I highlight the importance of population-based health data. It was discussed among European health ministers at the informal European Council meeting in Cyprus last week. We discussed the need for not just the patient care value of population-based health assessment, but how Europe might position itself more competitively by enabling access to healthcare data that might better inform life sciences and pharmaceuticals. I refer to driving both better patient care and the broader economy that Europe and Ireland are so well integrated with.
Comment on this
I move amendment No. 3:
In page 9, after line 34, to insert the following:
“Report on mental health data
7. Within two years of the commencement of this Act, the Minister shall publish a report examining the laws on medical confidentiality regarding access to mental health records. Mental Health data in this context means doctor’s notes, psychologist notes, psychiatrists notes or information disclosed verbally. The report shall be published so regulations may be set to protect people who may be at risk or under threat. The report shall be laid before both Houses of the Oireachtas.”
I thank the Minister for being here. The amendment that I am proposing is that, very simply:
Within two years of the commencement of this Act, the Minister shall publish a report examining the laws on medical confidentiality regarding access to mental health records. Mental Health data in this context means doctor’s notes, psychologist notes, psychiatrists notes or information disclosed verbally. The report shall be published so regulations may be set to protect people who may be at risk or under threat. The report shall be laid before both Houses of the Oireachtas.
The reason behind this amendment is that I spoke regarding a particular case last week about a co-parent who was not informed of his partner’s issues even though they were disclosed to a professional. Unfortunately, that co-parent lost his three children. This amendment is asking for a report on evaluating the practices of breaking medical confidentiality when a person’s life, or children’s lives, are under threat. It was inspired by what happened Mr. Andrew McGinley’s family.
Many in this House know the story about his children, Conor, Darragh and Carla. They were tragically taken from him in circumstances that shook the nation and, I believe, could have been prevented. Andrew has shown extraordinary courage. He was in Leinster House last week. He has channelled his grief into advocacy in this nature. He is seeking answers and reforms so that no other family experiences exactly what he has endured.
Medical confidentiality is a complex issue with which the Minister must deal in this Bill. Trying to reform the law in this area is difficult and it would require a separate Bill on its own to account for all the different issues involved. What is being asked for here, however, is a simple report that could help the Oireachtas to pass future legislation that might one day help to save someone’s life. I do not think anyone in the Chamber wants anyone to go through what Andrew McGinley went through. All I am asking for in this amendment is a report that, someday, might play a role in helping to reform the laws in relation to medical confidentiality.
Comment on this
I thank the Senator for his comments. I am enormously sympathetic to the case he raised that informs his comments, as well as the advocacy that Andrew McGinley has channelled on behalf of his family and the way in which he has used that so constructively. There is a place for an analysis of how that data is appropriately shared and how that might be considered. I will speak to the Minister of State, Deputy Butler, in that regard. This is quite technical legislation, however, with important safeguards that are linked to the broader European health data space and the way in which data is managed, protected and used in those different contexts. I am not able to accept the amendment in the context of this legislation but I do not wish for that to take away from the significance and importance of what the Senator has raised, nor the intent of his amendment, which is to enable a gentleman like Mr. McGinley to have broader access to issues that are directly of concern to him.
I have to say that in the context of this Bill and in order to ensure its compliance with the broader legislation within which it fits, including domestic and European legislation, the protection of patient privacy and upholding data protection principles are fundamental to patient confidence in the handling of their health information for the broader system. The Health Information Bill complements and builds on the rights of natural persons provided at European and domestic level with the GDPR in respect of their personal data. It has been necessary to have sustained and positive engagement with the Data Protection Commission throughout the drafting process of this Bill.
People accessing mental health services deserve the same rights as people accessing any other form of health service. I acknowledge the intent of the particular difficulty raised by the Senator. I support the involvement of family members and loved ones in any person's care and treatment across the HSE, including where somebody accesses mental health services, as those who have a better and stronger network and the involvement of their family tend to have better outcomes. It is my understanding that 90% of people accessing treatment involve their families in some form. This does not answer the question posed by the Senator where that was not so.
People are actively encouraged by their multidisciplinary teams to involve family members in their care and treatment. Conversations on consent and the involvement of family should be ongoing and reactive to the person's changing condition. Where a person does not consent to having his or her personal health information shared, that must be respected outside very limited circumstances, which is the place where better discussion may be had.
As the Senator will appreciate, not only for the technical legislative purposes and the way in which this Bill fits into a broader suite of domestic and European legislation, the confidentiality piece is integral to how we are going to develop this electronic health record from a systems protection perspective and a patient participation perspective and so, for the purposes of this Bill, I cannot accept the amendment. However, I will have a conversation with the Minister of State, Deputy Butler, about how we might address the substantive question in the Senator's amendment and how we might think better about that for the future. I hope that will be of some satisfaction to the Senator.
Comment on this
I realise that this is a quagmire for the Minister with regard to the Mental Health Bill and confidentiality. One thing that came to light was the fact that there were family members who were actually informed. It was just that the co-parent who had responsibility for the children was not informed. As that is where it all fell down, there is an area that needs to be addressed. The Minister is right. My intent is to try to make a difference for the likes of Andrew McGinley's family and families in the future. That is my intent and so that is why I will press the amendment.
Comment on this
Our health system needs a robust and proven identifier so that health information can effectively and reliably be associated with the right individual.
That is essential for care and treatment, as well as for patient safety. The Bill aims to enhance patient safety through a stronger identification process, including best practice use of PPSNs and eircodes to uniquely identify patients.
Amendments tabled on Committee Stage in the Dáil provided for the insertion of a new section 12, mandating a health services provider to record the PPSNs of his or her patients and associate them with any record that health services provider makes in relation to the provision of health services to patients. It also empowers a health services provider to request a patient to provide his or her PPSN, empowers the HSE to use a PPSN to identify a patient in order to identify and link the patient's health information to his or her electronic record, and mandates a relevant person, as defined in the Bill, to provide a PPSN of a patient where the number is requested by the HSE and the relevant person has the PPSN in his or her possession.
Importantly, a patient shall not be refused a health service solely because he or she has not been issued with a PPSN or is not in a position to provide his or her PPSN. The amendment allows for further consultation with the Department of Social Protection and provides clarification for the benefit, in particular, of a health services provider or relevant person that using or seeking a PPSN for the purposes set out in the Bill is not an offence under section 262(9) of the Social Welfare Consolidation Act 2005.
Comment on this
Section 21 mandates the HSE, following consultation, to prepare guidelines for the purposes of the Bill, including on the digital format and standards required in respect of Part 2, on the statutory duty to share. I thank the Senators for their interest in and engagement on the quality of information shared in respect of patients. While I have reported important progress to Senators today, I acknowledge their ongoing interest in this. I will continue to report to the Seanad on the progress on the sharing of health information across the system in terms of both section 38 hospitals and private hospitals. With respect to where I see a difficulty and cause for concern, I commit to updating Senators both publicly in the Seanad and privately on the progress or lack thereof in respect of improving the data-sharing culture in health services generally.
The amendment provides for the HSE to consult HIQA in the preparation of guidelines in relation to the Act. While the HSE has been tasked with the preparation of guidelines under the Bill, the amendment acknowledges the central role of HIQA in developing health information standards within healthcare settings as well as the importance and necessity of drawing from and building on national expertise to ensure effective implementation of the legislation.
I acknowledge and appreciate the strong engagement from HIQA in respect of this legislation, including in the wider context of giving full effect to the EU regulation on the European health data space, of which this Bill is the first step. As part of this work, HIQA leads on a number of grant-funded work packages, including on data quality and the development of a metadata catalogue.