James Reilly (Dublin North, Fine Gael) | Oireachtas source

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.