Health Identifiers Bill 2013 [Seanad]: Report and Final Stages

I move amendment No. 1:

In page 13, to delete lines 11 to 13.

This amendment seeks to delete lines 11 to 13 on page 13, which state:

The assigning of an individual health identifier to an individual shall not be regarded in any way as indicating, in and of itself, an entitlement to, or eligibility for, the provision of a health service to the individual.

We discussed my position on this on Committee Stage and the Minister is familiar with my views on the matter. My view is not just in reaction to the fact that this particular section - section 5(3), in Part 2 of the Bill - presents, but also has a historic root in, the former Government's commitment - with a small "c" - over many years to introduce legislation that would affirm the individual's right and entitlement to health and personal social services. I am speaking of a Bill that both the Minister and I referred to on many occasions when we shared the Opposition benches, the eligibility for health and personal social services Bill. This Bill was repeatedly promised year after year and appeared on the Government's programme for legislation, but it was never presented and eventually fell off the table entirely.

It is not that I take the view that an individual health identification number asserts particular rights of access or entitlement, but I am concerned by the fact that we have, in such a bald and bold way, stated in this legislation that it does not confirm entitlement to or eligibility for personal or any other services that would come under the HSE or the Department of Health's remit. Therefore, I believe this particular subsection should be removed. The introduction of individual health identifier numbers has a particular purpose - one that I support - and I have indicated to the Minister that I will not oppose the passage of the legislation. However, I feel this is a negative position to take, against the backdrop of all we argued for previously.

I believe we have a shared view that there is universal entitlement, and we want to get to a point at which the individual will be able to assert that entitlement and eligibility. This is something we are working towards, albeit with a different formula for its introduction. I appeal to the Minister to recognise that we are working to a shared end, consider my amendment and agree to the removal of this subsection.

I thank Deputy Ó Caoláin. I recall his moving this amendment on Committee Stage and I recall saying that we might reflect on it. I know he is hoping for a different answer from the one I gave him then, but I have had time to reflect and am sure he will be neither surprised nor disappointed if I give the same answer again, particularly as he has indicated that he accepts the reason that the provision he seeks to delete is in the Bill.

The purpose of the Health Identifiers Bill is to put in place an enabling legislative framework for a system of unique health identifiers for individuals and health service providers. The Bill is a patient safety identification initiative, not a measure to confirm rights or entitlements. Eligibility for health services is a wholly separate issue and is provided for in other legislation. Any requirement to confirm eligibility for services before issuing an individual health identifier could delay the process and, therefore, have patient safety implications. The deletion of the words sought by the amendment could send the wrong signal about the purpose of the Bill. Therefore, I do not intend to accept the amendment.

I acknowledge I am not surprised. Nevertheless, it is important that the points I have made are taken on board. I am anxious that we get to a position in which people's entitlement to and eligibility for health services is affirmed. This is something that is not currently confirmed in the Constitution nor in any legislation of which I am aware, which is a major failure on the part of legislators.

I believe the statement in the Bill, which so negatively states that it does not accord entitlement to or eligibility for services, is unnecessary when the purpose of the individual health identifier is already well explained within the body of the legislation.

I believe subsection 5(3) is an unnecessary and regrettable inclusion, taking as it does a most negative position with regard to people's entitlement to and eligibility for health services. I can do no more at this point in time than record the fact that I do not support the inclusion of subsection 5(3) in the legislation as now presented on Report Stage.

Does Deputy Ó Caoláin wish to move his second amendment?

No; I wish to press my first amendment.

Question, "That the words proposed to be deleted stand", put and declared carried.
Amendment declared lost.

I move amendment No. 2:

In page 13, to delete lines 14 to 18 and substitute the following:

“(4) (a) The Minister shall put in place measures to ensure that an individual’s individual health identifier will be made known to him or her as of right (or, in the case of a deceased individual, to be made known to the individual’s personal representative).”.

This amendment seeks to change the text of subsection 5(4)(a), which currently states: "The Minister may put in place measures...". I have not held to the exact same words, but the critical change is that the word "shall" replaces the word "may". The Minister's text states that the Minister "may" put in place measures to assist in enabling an individual's health identifier to be made known to him or her. I am very much of the view that the Minister should do this in any event. Again, on Committee Stage the Minister argued that it is not an essential requirement and that there would be cost implications. I am speaking here for many citizens when I say that with the allocation of an individual health identifier number, many of us would like to know exactly what that number is and what it references.

We know from the exchanges we had on Committee Stage that it does not allow for access to clinical detail relating to an individual's historical health circumstances. However, it is important information. It is data held on each and every one of us. I would certainly like to know my IHI number, as I know my PPS number and many other numbers relevant to my life. The Minister is not committing to sharing that information.

The Bill only provides that he or she "may" do so, as the case might be. I believe it is an important right of the individual and the citizen to know his or her health identifier number. I can imagine a myriad of circumstances in which knowing that number would be advantageous or helpful and could be of importance healthwise, if not live-saving. Again, I put the case to the Minister that the amendment seeking to change lines 14 to 18 through the substitution I have presented would be not only an improvement but a welcome one that many would understand and support.

I have considered the matter further since the Deputy moved this amendment on Committee Stage but I have not changed my mind. However, I hope I can clarify how the identifier system will work to greatest effect without the need for people to know their IHI unless they want to. I think that is the Deputy's principal concern, and I am confirming here that the identifiers will be accessible to those who wish to know them. There is no issue in that regard. The Bill already provides in section 5 that the Minister may put in place measures that he or she considers appropriate to assist in enabling an individual to have his or her IHI made known to him or her. It is not intended to systematically notify the population at large, individually and directly, of their IHI for several reasons. A mailing campaign to provide all citizens with their IHI would be costly, with no obvious offsetting benefit, given the way the identifier system will work. Such a campaign would include advising many citizens of a number for which they might not have a use for many years. It would also introduce unnecessary risks to privacy and the risk of identity theft, for example, due to the delivery of IHI numbers to out-of-date addresses and so forth. It is the intention that a major public information exercise will be undertaken at the appropriate time when the implementation process is advanced to advise both providers and patients about the introduction of the IHI, how the identifier system will work, the benefits of the system and how the IHIs will be assigned and managed. It will also make clear that anyone who wants to know his or her IHI can seek it from the HSE but will not need to provide it when accessing health care. That is an important point which we covered on Committee Stage. Not having or knowing one's IHI will not prevent one from receiving a service, should that be necessary.

It should be clear, therefore, that there is no intention in any way to discourage or prevent interested citizens from being advised of their IHI. If there are difficulties, the Minister can invoke section 5(4)(a) to put in place measures to make people aware of their IHI and deal with the specifics of any problem. I will not be accepting the Deputy's amendment for the reasons outlined.

The Minister's argument broadly relies on possible identity theft and other matters, many of which could apply to any of the other situations where citizens have numbers within the system - I have already made reference to the PPS number, and there are numerous other examples one could cite. I do not know that it is beyond the Minister's capacity to find a way to provide the IHI number to citizens without running the risk or risks to which he refers. I am sure there are vehicles by which that could be put in train - through the GP network, for example, or any number of other means. These numbers may very well be, in terms of the outworking of this legislation, already to hand. It is about having a willingness to find a means to do it. Now the responsibility lies with the individual, who must be proactive if he or she wishes to secure his or her number. I was not ruling that out entirely, but the entitlement is there and I believe the Minister could identify measures by which this could be done. I hold the view that this is a right and am surprised that under data protection legislation we are not entitled to this information in any event. I take the view that we are entitled to it because the number relates to us as individuals. We are clearly not going to agree. The Minister believes it is a "may" and I believe it is a "shall". I wish to press my amendment.

Amendment put and declared lost.

When is it proposed to take Fifth Stage?

Question proposed: "That the Bill do now pass."

I thank those opposite and all other Members for their support for the Bill. This is an important patient safety initiative and I am of the view that it will prove beneficial for many years to come.

Question put and agreed to.

The Bill, which is considered to be a Bill initiated in Dáil Éireann in accordance with Article 20.2.2° of the Constitution, will now be sent to Seanad Éireann.