Select Sub-Committee on Health debate -
Thursday, 1 May 2014

Health Identifiers Bill 2013: Committee Stage

Chairman

I welcome the Minister for Health, Deputy James Reilly, and his officials. I ask members to switch off their mobile telephones. This meeting has been convened to conduct Committee Stage of the Health Identifiers Bill 2013. This is a select committee of the Dáil so officials cannot participate in the meeting. They are present to assist the Minister. The grouping of the amendments has been circulated to members. It is proposed to group the following amendments for the purpose of debate: Nos. 1, 2, 5, 6 and 7 together; Nos. 3 and 4 together; and Nos. 10 and 11 together. All other amendments will be discussed individually.

The Minister can make an opening statement if he wishes. If not, we will proceed with the Bill.

Minister for Health (Deputy James Reilly)

I thank the committee and apologise for delaying the meeting. I thank Deputies for their support of the Bill on Second Stage and for some very positive suggestions.

Section 1 agreed to.

SECTION 2

Chairman

Amendments Nos. 1, 2, 5 and 6 are consequential to amendment No. 7. Amendments Nos. 1, 2, 5, 6 and 7 will be discussed together.

Deputy James Reilly

I move amendment No. 1:

In page 6, line 5, to delete “section 3(3) and (5)” and substitute “section 3(3) and (8)".

There is a significant amount of cross referencing involved in the amendments. Accordingly, I propose to take the following legal and consequential amendments together, amendments Nos. 1, 2, 5, 6 and 7. Amendments Nos. 1, 2 and 5 arise from the renumbering caused by amendment No. 7 while amendment No. 6 is a drafting amendment to bring it into line with amendment No. 7.

The purpose of amendments Nos. 6 and 7 is to introduce an explicit public interest consideration where the Minister is making regulations in relation to the following matters: adding to the list of authorised disclosees as per the definition of authorised disclosee in section 2(1); adding to the list of specified persons as per the definition of specified person in section 2(1); adding to the health related purposes in secondary purposes for which the individual health identifier, IHI, and the related identifying particulars can be processed as per the substantive amendment, amendment No. 4, to paragraph (g) of secondary purposes; restricting access to the information in the individual health identifier register as per the substantive amendment, amendment No. 10, to section 10; and restricting the disclosure by specified persons of information in the register to other specified persons and authorised disclosees as well as limiting the secondary purposes for which such information might be used by authorised disclosees. This relates to substantive amendment No. 11 to section 11.

In determining the public interest, the Minister is required to have due regard to protecting the privacy of individuals and securing the effective achievement of one or more than one relevant purpose. I should add, for completeness, that in all the above cases, any such regulations will also be subject to consultation with the Data Protection Commissioner.

Deputy Caoimhghín Ó Caoláin

I accept the technical nature of the amendments in this grouping, so I support the Minister's amendments.

Amendment agreed to.

Deputy James Reilly

I move amendment No. 2:

In page 8, line 16, to delete “section 3(5)” and substitute “section 3(8)".

Amendment agreed to.

Chairman

Amendments Nos. 3 and 4 are related and may be discussed together.

Deputy James Reilly

I move amendment No. 3:

In page 10, to delete lines 19 and 20 and substitute the following:

“(d) the carrying out of health research that is the subject of a research ethics approval (or any cognate expression) under an enactment or European act prescribed for the purposes of this paragraph,”.

The Bill provides that the IHI and its related identifying particulars - called relevant information, individual, in the Bill - can be used for relevant purposes, that is, primary and secondary purposes. Amendments Nos. 3 and 4 relate to a better focusing of the secondary purposes in the Bill. Consequently, I propose to take them together.

Currently, in the Bill, one of the permitted secondary purposes as per paragraph (d) of the definition of secondary purposes is the carrying out of health research that is governed by an enactment or a European Act prescribed for the purposes of that paragraph. Consistent with the objective of focusing the use of the IHI and its dataset, the intention had been that the provision should cover research that had been the subject of research ethics approval under national or EU law, for example, clinical trials or clinical investigations into medical products and medical devices. In addition, in the future, paragraph (d) was also intended to encompass other health research that would come through the voluntary but governed research ethics approval arrangements to be provided for in the proposed Health Information Bill.

However, the legal view was that the wording was too broad to achieve the intended objective. Hence, amendment No. 3 makes explicit reference to the carrying out of health research that is the subject of a research ethics approval, or any cognate expression, under an enactment or European Act where the Minister has prescribed that enactment or European Act for the purposes of paragraph (d). Amendment No. 4 relates to paragraph (g) of the definition of secondary purposes which currently refers to "any processing of personal data that is in accordance with the Data Protection Acts 1988 and 2003". Paragraph (g) is potentially very broad and could allow the use of the IHI and the disclosure of identifying particulars beyond what is intended.

Again, consistent with our desire to control and limit the use of the IHI and its dataset, it is proposed to replace the existing paragraph (g) with a more specific provision allowing the processing of the IHI and its dataset under the Bill where required to protect or prevent injury or other damage to the health or safety of an individual; where required under the law or by order of a court; where the processing is in accordance with the Data Protection Acts; and where required for the purposes of obtaining legal advice, the purposes of legal proceeding or the purposes of, or in the course of, alternative dispute resolution procedures.

In recognition that some flexibility may be desirable, the Minister will be able to prescribe other health related processing of the IHI and its identifying particulars not already covered under secondary purposes should experience show that to be necessary. This would only be done where, as per amendment No. 7, the Minister is satisfied that it is in the public interest to do so and he or she has also consulted the Data Protection Commissioner. Both amendments Nos. 3 and 4 have been positively discussed with the Office of the Data Protection Commissioner.

Deputy Caoimhghín Ó Caoláin

The Minister has gone some way to answering some of my concerns with regard to amendment No. 3. This is not a criticism of the Parliamentary Counsel, as I have been a Member of the House for a while and I understand the legalese that is necessary in the preparation of legislation and the explanatory memorandum, but I found the explanatory memorandum heavy work in this instance.

Perhaps the Parliamentary Counsel will appreciate my remarks and revisit it.

Can the Minister, in his own words, give an assurance about the full implications of the passage of the Bill? For instance, it was my initial understanding that we were dealing with individual identifier numbers that would assist patients in their dealings with GPs and GP referrals to hospitals, hospital accident and emergency departments, etc. Also, it would ensure people would have immediate access to the full facts on any one of us.

There is also the issue of the gathering of statistics and building files on individual citizens which we must tease out here. There is some concern among people and, naturally, they have had an initial reaction to that type of further oversight and information gathering. All of us need to be in a position to assure them - if we support the passage of the legislation - that the provision is first and foremost in the interest of the individual citizen.

I listened to what the Minister had to say and acknowledge that his explanation went some way to clarifying the matter but I ask him to expand on it. Are there sufficient safeguards in place to protect the personal data of citizens? Colleagues have raised the question with me.

Amendment No. 3 covers the carrying out of research and suggests that private concerns which carry out research, such as research institutes and pharmaceutical companies, would have access to a person's personal data. Can the Minister answer my question and give an assurance which we can relay? Can he assure us that people's personal data will not be utilised except in their primary interest and the interest of the most successful management of all their healthcare needs, which is the primary focus and intent of the legislation.

Chairman

I join with the Deputy and confirm that people who share a similar view to him have made representations to me in terms of their personal data being protected and safeguarded in the Bill. There is a need for information to be shared by agencies and Departments. However, it is the utilisation of the data that has exercised some people and, rightly or wrongly, they are concerned about the matter.

Deputy James Reilly

I appreciate what the Deputy and Chairman have said. I, too, have a concern about the matter which I have been very clear about and that is why we ran it by the Data Protection Commissioner.

I do not want to mention names but recently we had a very sad case concerning somebody who passed away. People will know who I am talking about. It has turned out that 113 people listed with the primary care reimbursement service share the same name. There would not have been the same amount of hassle over the individual's medical care if she had a health identifier because the service would have known straightaway who she was and whatever. An identifier number can remove many of the problems that people encounter and will be hugely important. It is also a patient safety issue. As Deputy Ó Caoláin pointed out, it is important for one to be able to look at the right file for each person. It is the nature of any country that areas have people who share a name because families spread out. This leads to confusion so correct identification is critically important. For example, Toomevara is home to the O'Mara surname. In other words, a lot of O'Maras live in the region and, therefore, an individual health identifier will greatly help to identify people. This is also a patient safety issue.

With regard the gathering of information, the patient's name, address and date of birth will be the only information on the individual health identifier register. It simply identifies particulars. There is no medical information and researchers will find little of value to them on the register.

Deputy Ó Caoláin raised the specific issue about private companies and pharmaceutical companies. The law, as it stands, will not change the right to access information and it is very clear about the ethics associated with research. Those laws will still pertain and the Data Commissioner will be very much involved. There will be no clinical data on the register and it will only deal with identification issues. It does not provide any rights on the usage of patient information not currently enjoyed under the legislation on data protection. It is important to clarify that the Bill will introduce a framework for using the individual health identifier number but it does not change the existing law on the collection, use, sharing or disclosure of personal health data, or the creation of medical record databases.

The processing of personal health data continues to be governed by the Data Protection Acts. The Bill has been fully discussed with the Data Protection Commissioner and is designed to ensure that individual health identifiers are associated with an individual's medical records and related medical correspondence. This will help ensure that the individual can be uniquely and quickly identified during each engagement with the health system thus leading to better care and safety.

That is the official note, but I have already said in my own words that this is about patient safety. There is no data on the register other than identifying data; there is no medical data whatsoever. People are right to be concerned about the matter. I support their concerns and they are supported in the Bill. The failure in other jurisdictions has been the idea that Big Brother can access an individual's information. That is not the case here because we have an identifier which simply identifies a person and nothing else.

I am aware about the controversy in England over the national record database belonging to the NHS, the use to which the data can be put to and the persons to whom the data can be disclosed. This Bill is not about such databases. The only national register to be created by the Bill are the registers to hold individual health identifiers, the providers' identifiers and related identifying particulars such as name, address, etc. It is specifically provided in the Bill that the identifying particulars on an individual's IHI cannot contain clinical data on the individual. I hope that I have made the issues very clear.

Further, the persons who can access the register, the purposes for which they can access the register and use the individual health identifier, and the identifying particulars in the register, are set out fully in the Bill, as indeed are the persons to whom they can disclose such information. Therefore, I believe that there is adequate and clear protection for people. They do not have to worry about their medical information being available on the register because no clinical data will be held on the register.

Deputy Caoimhghín Ó Caoláin

I wish to ask the Minister a brief supplementary question. I do not doubt what he has assured me to be the case. Like him, I must confidently assuage people's fears and, therefore, ask him the following again. The Minister's amendment No. 3 is a substitute for an almost two-line provision that already exists on page 10 which states: "[T]he carrying out of health research that is the subject of a research ethics approval ... under an enactment or European act prescribed for the purposes of this paragraph." He has told me that the clinical data will not be accessible to those who are not the intended accessors to our individual needs. How can anything other than the information be of value in "the carrying out of health research" as provided for in his amendment? I am a little stumped by the amendment and did not purposely intend to labour the issue. Today's meeting is the appropriate opportunity to get as much clarity as we possible can. The Minister has acknowledged that he shares my concerns and that of Deputy Buttimer. Will he consider any other provision, amendment or strengthening mechanism that would give a greater assurance to public concern about this area? I do not doubt his intent which he explained.

The Minister has read the official note. It would be remiss of me if I did not focus on the fact that we are providing for access for health research purposes and without the clinical data I am at a loss to understand how that could be of any specific assistance. I am sure there is an answer. As it is not just for me, but for every citizen I ask the Minister to come back to it again.

Deputy James Reilly

I know that we can all have a reputation for being difficult. I do not believe for one moment that the Deputy is being difficult. I appreciate that he has a duty of care to the people who elected him to reassure them and I am delighted to have the opportunity to do so for the people who elected me. The only value in this from a researcher's point of view would be to be assured they have the right person's clinical data which they could not get unless they already had consent from the person concerned. That is the only way I see this being of any value to them, where they can be absolutely assured that this clinical data relates to a particular person. It does not change anything under the law on research. The current pieces of research that are ongoing, which people have a right to, is all based on the premise of having the consent of the person concerned and that does not change in any way. Therefore, the only value this would have from a researcher's point of view is a further reassurance that they have the right person's information, that they are not looking at somebody else's information. Let us call a spade a spade, we have had mix-ups in people's files in the past. Who is to know, when one goes back, what one is looking at. The system is only a further protection in many respects and it is only of value from a researcher's point of view in reassuring them. I have the list of what is on the register - name, address, forename, date of birth, place of birth, gender, all former surnames, mother's surname, address, nationality, personal public service number, date of birth in the case of a deceased individual, signature, photograph, and any other particulars prescribed, excluding clinical information. It is really only an extra layer of reassurance for research purposes but from the clinical patient point of view this is hugely important for a whole host of reasons that we have already mentioned.

Deputy Caoimhghín Ó Caoláin

We are on Committee Stage and still have to deal with Report and Final Stages. This is not my stand-alone concern, there is always a body of concern in respect of this type of provision. I ask the Minister and his officials to look at this again to consider if there is anything further they can do in the intervening period until Report Stage. I cannot present a formula off the top of my head. Let me take a look at this to see if there is anything further that can be done that would assuage any concerns in this regard. I offer that comment only to assuage any other fears outside this room.

Deputy James Reilly

I have no issue with that. My officials will certainly look at it again but I think they have closed it off. I reiterate that just because one gets approval to look at the individual health identifiers one still needs the patients' consent to use their medical data. There is no medical data on individual health identifiers register; it is purely an identification register. We will continue to examine the issue to see if we can improve the Bill and improve people's sense of privacy.

Amendment agreed to.

Deputy James Reilly

I move amendment No. 4:

In page 10, to delete lines 25 and 26 and substitute the following:

"(g) any-

(i) processing of relevant information (individuals) required to protect or prevent injury or other damage to the health or safety of an individual,

(ii) processing of relevant information (individuals) required by or under an enactment, rule of law or equity or order of a court,

(iii) processing of relevant information (individuals) that is in accordance with the Data Protection Acts 1988 and 2003 and required for-

(I) the purposes of obtaining legal advice,

(II) the purposes of, or in the course of, legal proceedings, or

(III) the purposes of, or in the course of, alternative dispute resolution procedures agreed between a service provider and an individual as a means of resolving a dispute,

or

(IV) subject to section 3(4) and (8), processing of relevant information (individuals) relating to health that is prescribed for the purposes of this subparagraph;"

Amendment agreed to.

Deputy James Reilly

I move amendment No. 5:

In page 10, line 30, to delete "section 3(4) and (5) " and substitute "section 3(5) and (8)".

SECTION 3

Amendment agreed to.

Section 2, as amended, agreed to.

Deputy James Reilly

I move amendment No. 6:

In page 11, line 3, to delete "The Minister shall not" and substitute "Subject to subsection (9), the Minister shall not".

Amendment agreed to.

Deputy James Reilly

I move amendment No. 7:

In page 11, to delete lines 8 to 19 and substitute the following:

"(4) Subject to subsection (9), the Minister shall not prescribe a processing of relevant information (individuals) relating to health for the purposes of subparagraph (iv) of paragraph (g) of the definition of "secondary purpose" in section 2(1) unless he or she is satisfied that it is in the public interest that that processing be a secondary purpose for the purposes of this Act.

(5) Subject to subsection (9), the Minister shall not prescribe a person, or a class of persons, for the purposes of paragraph (c) of the definition of "specified person" in section 2(1) unless the Minister is satisfied that it is in the public interest that that person, or a person who falls within that class of persons, as the case may be, be a specified person for the purposes of this Act.

(6) Subject to subsection (9), the Minister shall not prescribe a class of specified persons and a class of relevant information (individuals) for the purposes of paragraph (b) of section 10(2) unless he or she is satisfied that it is in the public interest that specified person who falls within that class of specified persons not have access, pursuant to paragraph (a) of section 10(2), to relevant information (individuals) that falls within that class of relevant information (individuals).

(7) (a) Subject to subjection (9), the Minister shall not prescribe a class of relevant information (individuals) to which paragraph (c) of section 11(6) does not apply unless he or she is satisfied that it is in the public interest that that paragraph not apply to that class of relevant information (individuals).

(b) Subject to subsection (9), the Minister shall not prescribe a class of relevant information (individuals) to which paragraph (e) of section 11(6) does not apply unless he or she is satisfied that it is in the public interest that that paragraph not apply to that class of relevant information (individuals).

(c) Subject to subsection (9), the Minister shall not prescribe a class of secondary purposes to which paragraph (e) of section 11(6) does not apply unless he or she is satisfied that it is in the public interest that that paragraph not apply to that class of secondary purposes.

(8) The Minister may, after consultation with the Data Protection Commissioner-

(a) prescribe a person, or a class of persons, for the purposes of paragraph (b) of the definition of "authorised disclosee" in section 2(1),

(b) prescribe particulars for the purposes of paragraph (n) of the definition of "other identifying particulars" in section 2(1),

(c) prescribe a processing of relevant information (individuals) relating to health for the purposes of subparagraph (iv) of paragraph (g) of the definition of "secondary purpose" in section 2(1),

(d) prescribe a person, or a class of persons, for the purposes of paragraph (c) of the definition of "specified person" in section 2(1),

(e) prescribe a class of persons and a class of relevant information (individuals) for the purposes of paragraph (b) of section 10(2),

(f) prescribe a class of relevant information (individuals) to which paragraph (c) of section 11(6) does not apply, or

(g) prescribe a class of relevant information (individuals) or a class of secondary purposes to which paragraph (e) of section 11(6) does not apply, or both.

(9) When determining whether or not a matter referred to in subsection (3), (4), (5), (6) or (7) is in the public interest, the Minister shall have due regard to protecting the privacy of individuals and securing the effective achievement of one or more than one relevant purpose.".

Amendment agreed to.

Section 3, as amended, agreed to.

Section 4 agreed to.

SECTION 5

Deputy Caoimhghín Ó Caoláin

I move amendment No. 8:

In page 12, to delete lines 2 to 4.

My amendment seeks the deletion of lines 2 to 4 on page 12, which state: "The assigning of an individual health identifier 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." I think I indicated on Second Stage that I can understand the reason that formula would be employed. However, the reality is that while the provision of this particular subsection states that the individual health identifier shall not be regarded as indicating entitlement to health services, there is a lack of clarity in the overall body of health legislation about what exactly we are entitled to.

The Minister will recall sitting in this committee room as his party's spokesperson on health during a long period when we both, with our Labour Party counterpart, persistently challenged the former Government on eligibility for health and personal social services Bill, long promised by previous governments, each of which was Fianna Fáil-led. Eventually the Bill disappeared. It was supposed to clarify and update the provisions relating to eligibility to health and personal social services. We have no such legislative provision. Section 5(3) provides that even if one has a health identifier number, that does not of itself mean one has any particular entitlements. I am concerned about that. I would have expected that legislation along the lines of this Bill would, at the very least, not have stated that it does not provide one with, but might have confirmed, some degree of entitlement. I ask the Minister to comment on this.

I believe that this subsection should be deleted. I do not want to offer the Minister the answer that I anticipate he will give me. We need some statement of explicit entitlement in law. I figure that this particular bold statement, that while one has an individual identifier number it does not give one an entitlement, is unnecessary and unfortunate in this instance. I wish to press the amendment but I am anxious to hear the Minister's response.

Deputy James Reilly

The words that the Deputy seeks to delete could send the wrong signal about the purpose of the Bill. It is purely and simply an identifier, nothing else, and it is critically important to be clear on that point. The other issue that has been raised is for another day. The purpose of this Health Identifiers Bill is to put in place a legislative framework for the individual health identifiers. This is primarily a patient safety issue as I have already said. Eligibility for health services is a separate issue and is provided for in other legislation. Any requirement to consider entitlements or eligibility in advance of assigning an IHI could potentially delay assignment and, therefore, compromise patient safety.

We must also bear in mind that the IHI is an identifier which will apply throughout the health service, public and private. Further, an IHI can also be assigned to anyone receiving a health service, whether or not the person is ordinarily resident in the State. The Irish health services regularly provide treatments, etc., to, for example, tourists on whom we would not want to confer rights to longer term care.

Nevertheless, assignment of the identifier would be an important element in ensuring their safety as patients while in this jurisdiction receiving care.

I am afraid I cannot accept amendment No. 8 because the purpose of the Bill and the intended use of the individual health identifier throughout the health service is for one purpose and one purpose only, that is, patient safety and to identify the patient, not to confer rights or entitlements.

Deputy Caoimhghín Ó Caoláin

I accept that and I understood why it is there in the first place. The Minister will recall the long time that we argued for it and we do not yet have that statement. I had anticipated that the Minister's reply would have referred to legislation yet to present in respect of the basket of care. Now, the Minister is picking it and that was the card I should have played. That was the one I had anticipated. We will park it as it is work for another day. I accept what the Minister has indicated and I understand it too.

Amendment, by leave, withdrawn.

Deputy Caoimhghín Ó Caoláin

I move amendment No. 9:

In page 12, to delete lines 5 to 9 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 know to him or her as of right (or, in the case of a deceased individual, to be made know to the individual’s personal representative).”.

I have invested such goodwill with the Minister this morning that I am hoping we will get a point at least, if not a goal. I seek to change the word "may" to "shall". Section 5(4)(a) states: "The Minister may put in place measures, or cause to be put in place measures, that the Minister considers appropriate to assist in enabling an individual’s individual health identifier to be made known to him or her...". I am unsure why the amendment as it appears in the amendment list has "know" and "know" rather than "known" and "known". I hope it was not my typographical error in submitting it, but my amendment should read "known" and "known".

The key change is that we move from "may" to "shall". I believe it should be done and that each individual should know his individual health identifier. That is critical. I hope that the change is self-evident and that the Minister will accept it because the knowledge of our respective numbers is crucial. I can envisage situations where that knowledge would be critical in a raft of settings. I urge the Minister's acceptance of amendment No. 9 on that basis.

Deputy James Reilly

The Deputy has made clear the intention of the amendment. It removes from me the right to put in place provisions to inform people of their individual health identifier and makes it an obligation upon me that everyone would have to be informed. This would have major cost implications and it might also compromise the privacy of the system.

I have no issue with the principle of what Deputy Ó Caoláin is suggesting in terms of the right of people to know their IHI. That is an absolute given. However, to put the onus on us to ensure that everyone knows their IHI - people may not wish to know, may not need to know or may not be interested in knowing - would put additional costs upon the State which I do not believe are warranted at this juncture, especially given that we are still struggling to continue our economic recovery. Putting on additional expenses at this point would not appear to be wise.

I understand fully where the Deputy is coming from and I have no issue with it in principle in any way. It is an absolute right that people will have to know their IHI and they will be able to find it out easily if they wish to know. However, to put an onus on the State to write or communicate to everyone along with all the associated privacy and security issues would be quite expensive and I do not believe it is warranted.

Health care providers can make available to a patient his IHI should the patient want it. Indeed, the optimum way to convey the IHI to a person is in the health care setting, where health care workers can verify the person's identity and take the opportunity to explain the uses and value of the IHI. It is also important to note that the Bill explicitly provides in section 11 that no one will be denied a health service to which he or she is otherwise entitled simply because they do not know their IHI, do not have an IHI or have no wish to provide their IHI or identifying particulars.

This is purely a register. It does not confer any rights or take away any rights. Let us be clear: there is no intention in any way to discourage or prevent interested persons from being advised of their IHI. If there are difficulties then the Minister can invoke section 5(4)(a) and introduce measures to deal directly with the specifics of any problems to enable persons to obtain their IHIs. The approach in the Bill is the most appropriate. While I appreciate the Deputy's objective, I will not be accepting his amendment on this occasion.

Deputy Caoimhghín Ó Caoláin

It is not to be argumentative but simply to try to understand how we are going to reach a situation whereby the individual health identifier will be of greatest service across the board. How do we intend to disseminate the information in respect of the individual's identifier? We will be holding it on a register. Presumably, the general practitioner network will need to know although I am unsure about other areas like hospital access and other health care providers. How do we undertake to disseminate the information? The individual health identifier will not only apply to those who are medical card holders, for example. What about citizens outside the medical card register that is readily to hand? On what basis would the Minister proceed to allocate individual numbers? How will the Minister feed it into the system, because the system must have our respective numbers if it is to serve the purpose that the Bill intends?

I am at a loss in my own simple way to try to understand the out-working of this. I had thought just as people have their medical card number on a little card or their personal public service number if they are social protection recipients that we would each have some personal advice of our respective numbers. Given the information that has been shared with me, I am unable to understand at this point how we are going to get the optimum return from this legislation and its intent without the widest possible knowledge of the IHIs. I am willing to accept and I fully understand the cost factor and the challenge of undertaking the dissemination of this information. However, surely my proposal is the only way we can guarantee the most successful return from the entire exercise.

Deputy James Reilly

I reiterate that when a person attends a health care giver or health service provider the provider will have a number as well as access to the register and can feed numbers into the register. If a person does not have an IHI it can be organised there and then to give him a number. It is not intended that people would have a card. Anyone can get his IHI from the HSE or its successor if he so wishes.

There is another issue around mailing material. We all know that people are mobile now. We could have situations whereby people have moved house. If we had a mailing campaign then we would be addressing letters that could be opened by others now at a given address and the intended person may have moved on.

In short, it is clear that each provider will have access to the register and will be able to organise an individual health indicator number. A classic case of where this could arise is in the case of tourists. We are very fortunate to have a thriving tourist industry in this country, but tourists sometimes get ill and need to be looked after. The provider will give them an IHI. It is not a massive job to organise that and it is provided for here.

Deputy Caoimhghín Ó Caoláin

The point I am making is not about tourists, who are entitled to access whatever health service they need. However, unless the IHI system is operating on an international basis, their health history will not be accessible on our database. I presume the information we are talking about here in regard to health histories is part of what is retained and is accessible. If I present at a hospital emergency department, for example, will staff be able to access information regarding my personal health issues, allergies, current medications and so on? I understood that was the key information and is separate from the first line of information to which the Minister referred and which I understand does not refer to the clinical aspect. Surely the type of information I am talking about is at a further remove and can only be accessed by those with the relevant codes and approvals?

If I have got the wrong end of the stick here, I hope the Minister will help me out. We will not realise the full value of this system unless there is the widest possible range of data. I accept the point about people moving and personal details, but that is a risk factor with nearly every type of information that is disseminated today, either by Government agencies or the private sector in respect of PINs and so on. What other way is there to do it? I genuinely wish the project well because it is a good idea, and I am happy to have clarification from the Minister if I have formed the wrong idea of what he is about here. However, in so far as my understanding of the purpose and intent of the Bill is correct, I want to see this initiative being as successful as possible, in which case I am arguing that "may" should become "shall".

Deputy James Reilly

We are back to the core point. The IHI is simply a method of identification, nothing else. Health service providers can access the IHI register to give a person his or her IHI. The full value of the new system will be reached when we have e-health rolled out right across the system in a coherent and connected fashion, which is not the case at the moment. I was horrified to learn that not only were there 11 different systems in place under the former health boards which could not talk to each other, but something like 1,700 different software packages were in use throughout the system at one point.

Chairman

Are there still 1,700 now?

Deputy James Reilly

There may well be. The point, however, is that it is not ultimately about the number of systems but the degree of connectivity between them and having a portal through which they can all interact. This is not an issue unique to Ireland. It is a problem I discussed with the Swedish Minister only a few days ago at an EU meeting. A coherent e-health strategy is critical from the point of view of putting more coherence into the system and also in regard to patient safety, in terms of ensuring staff have the right patient in front of them with the right information.

I have already referred to tourism, but it is a fact that people tend to revisit this country having had a good experience here. We like to encourage that. It will be very easy for such people to get their IHI by informing the health service staff they encounter that they have been here before, in which case the provider will be able to find their IHI.

Deputy Caoimhghín Ó Caoláin

I mean no disrespect to the Minister but he has not assuaged my concerns on this issue. The purpose of this amendment is to seek to maximise the potential of the legislation to provide, as I would envision it, the best possible return in the interest of every citizen or anybody presenting to use our health services in the future.

SECTION 10

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

Amendment declared lost.

Section 5 agreed to.

Sections 6 to 9, inclusive, agreed to.

Chairman

Amendments Nos. 10 and 11 are related and may be discussed together.

Deputy James Reilly

I move amendment No. 10:

In page 14, to delete lines 7 and 8 and substitute the following:

"(2) (a) Subject to paragraph (b), a specified person may access the National Register of Individual Health Identifiers for a relevant purpose.

(b) Subject to section 3(6) and (8), a specified person who falls within a class of specified persons prescribed for the purposes of this paragraph (which may be all specified persons) shall not, pursuant to paragraph (a), access the National Register of Individual Health Identifiers in so far as the Register contains any relevant information (individuals) that falls within a class of relevant information (individuals) prescribed for the purposes of this paragraph as a class of relevant information (individuals) which may not be so accessed by that class of specified persons.".

Section 10 provides for access to the national IHI register by the Minister and specified persons. Specified persons include health professionals, their employees and agents, health organisations, their employees and agents, and also other bodies. The potential number of specified persons is, therefore, very large. As the section stands, access under section 10 is to all of the information in the register, that is, the IHI and identifying particulars, with no provision to allow the Minister to control or restrict access by specified persons to a lesser amount of information.

As I indicated on Second Stage, it seems advisable to include a provision allowing the Minister to restrict access, as not every specified person would necessarily need access to all of the information in the IHI register in respect of an individual. While the PPSN, for example, should be a searchable element in establishing an individual's IHI, it should not be something that is universally available to any specified person accessing the register. Accordingly, the purpose of amendment No. 10 is to allow for the making of regulations to limit access to the information in the IHI register. Such regulations will require consultation with the Data Protection Commissioner and a public interest dimension as per amendment No. 7.

Amendment No. 11, which is an amendment to section 11, arises from the same principle as the amendment to section 10. Section 11 deals, among other matters, with the processing by the Minister and specified persons of the IHI and the related identifying particulars in the IHI register, and the disclosure by them of such information to another specified person for relevant purposes or to an authorised disclosee for secondary purposes. It is proposed to allow the possibility, through regulations, of restricting the processing or further processing by specified persons of certain information in the IHI register and the disclosure by them of such information to other specified persons for a relevant purpose. The notion of restricted disclosure is being additionally strengthened in respect of disclosure by specified persons to authorised disclosees by providing for the possibility that it may also extend to restricting the use of such information in regard to certain secondary purposes. Regulations made pursuant to amendment No. 11 would involve, as per amendment No. 7, consultation with the Data Protection Commissioner and having regard to the public interest.

Amendment agreed to.

Section 10, as amended, agreed to.

SECTION 11

Deputy James Reilly

I move amendment No. 11:

In page 15, to delete lines 25 to 36 and substitute the following:

"(b) The Minister may provide an individual's relevant information (individual) to an authorised disclosee in order to enable the authorised disclosee to process that information for a secondary purpose.

(c) Subject to paragraph (d), a specified person may, for a relevant purpose, process or further process an individual's relevant information (individual) that the specified person has obtained pursuant to, and in accordance with, a provision of this Act, including by providing such information to the Minister or another specified person in order to enable the Minister or other specified person, as the case may be, to process the relevant information (individual) for a relevant purpose.

(d) Subject to section 3(7)(a) and (8), paragraph (c) does not apply to any relevant information (individuals) that falls within a class of relevant information (individuals) prescribed as a class of relevant information (individuals) to which that paragraph does not apply.

(e) Subject to paragraph (f), a specified person may provide an individual's relevant information (individual) that the specified person has obtained pursuant to, and in accordance with, a provision of this Act to an authorised disclosee in order to enable the authorised disclosee to process the relevant information (individual) for a secondary purpose.

(f) Subject to section 3(7)(b) and (c) and (8), paragraph (e) does not apply to any, or any combination, of the following:

(i) any relevant information (individuals) that falls within a class of relevant information (individuals) prescribed as a class of relevant information (individuals) to which that paragraph does not apply;

(ii) a secondary purpose that falls within a class of secondary purposes prescribed as a class of secondary purposes to which that paragraph does not apply.".

Amendment agreed to.

Section 11, as amended, agreed to.

Sections 12 to 19, inclusive, agreed to.

SECTION 20

Deputy James Reilly

I move amendment No. 12:

In page 22, line 39, after "service" to insert “or relevant communication".

This is a drafting amendment which is designed to align section 20(1) and (2) in terms of the references they contain to relevant communication. The purpose of section 20 is to provide that a health service provider who has been issued with a provider identifier must associate that identifier with the record of a health service provided for an individual and also use it in any relevant communication such as, for example, a referral letter from a GP to a hospital. In that respect, the section complements section 11 which requires the IHI to be similarly applied. This allows us to circumvent the terrible problem which sometimes arises in the context of individuals being obliged to revisit files after five or six years and not being in a position to figure out which doctor wrote what because the signatures are illegible. On foot of this section, the provider identifier will have to be supplied and it will, therefore, be easy to determine who wrote what note and who provided particular care.

A policy objective behind the Bill is to avoid unnecessary duplication. Accordingly, it provides that a health service provider who is a health practitioner already required under other legislation to use the registration number given to him or her by his or her professional regulatory body can instead use that number, rather than the provider identifier, in the record made of the health service provided and related correspondence. Such a scenario would arise, for example, under section 43(8) of the Medical Practitioners Act 2007 which provides that:

A registered medical practitioner shall, as soon as may be after the person has received the certificate [of registration] referred to in subsection (5), cause the registration number stated on that certificate to be included on all medical prescriptions and all other documentation and records, whether in paper or electronic format, relating to that practitioner’s practice as a registered medical practitioner.

Amendment agreed to.

Section 20, as amended, agreed to.

Sections 21 to 39, inclusive, agreed to.

Schedules 1 and 2 agreed to.

Title agreed to.

Deputy James Reilly

I thank the Chairman and members for their time and courtesy. Our debate has helped in improving the Bill. In many respects, it will also, just as importantly, assist people in understanding the Bill's purpose.

Deputy Caoimhghín Ó Caoláin

I just want to flag that we will return on Report Stage to some of the issues we have discussed.

Chairman

I thank the various officials who attended the meeting for their courtesy and co-operation.

Bill reported with amendments.