Billy Kelleher (Cork North Central, Fianna Fail) | Oireachtas source

I welcome the opportunity to speak. We will be supporting the Bill. It was included in a health information Bill when the heads of that Bill were approved by the Government in 2009. This was clearly an issue that was discussed in the context of the troika to ensure health identifiers were put on a statutory basis. For that reason, we feel it is an appropriate Bill. In general, when one considers the need to ensure proper transparency and accountability in terms of identification throughout the health process, this is clearly a step in the right direction.

There are some issues of concern which the Minister of State, Deputy Alex White, might consider. Given the health information Bill is imminent, I received an e-mail from some people who are concerned, and I said I would quote it. The Minister of State can take it as a statement of views, rather than a point of dispute. The e-mail reads:

The Health Information Bill is imminent and Electronic Patient Records are being devised. Summary discharge records etc have already being devised by the HSE. Despite several expert papers showing how patient data can be compromised because of lack of privacy enhanced technology, we are the only country not discussing this in the public domain. Medical Confidentiality as we know it will be gone.

The Unique Health Identifier proposed will be linked to personal information which will be available to all HSE staff and researchers. These include medical researchers, epidemiologists, insurance personnel and companies such as Google. This is against Article 8 of the European Convention on Human Rights.

We may be told that the data will be anonymised. Dr Latanya Sweeney from Harvard University has proven in 2000, that date of birth, gender and zipcode can re-identify the medical records of about 90% of the American population.

These "researchers" will have access to these centralized medical records and facilitated by the unique identifier without an opt in or so far without even an opt out (which is illegal under European law) and because we have no HIPAA law or Anonymised code these personal records, including psychiatric, and reproductive records will easily be re-identified.

The NHS in the UK are presently selling patient records to Google. They are uploading GP records without consent, and selling them internationally.

As I said, that is from an e-mail I received from some very eminent people, who asked me to bring it to the Minister of State's attention, as I have done. On the broader issue, as I said, we welcome the fact this Bill is being brought forward.

We will be discussing e-medicine and the need for us to avail of technology in the whole area of diagnostics and the delivery of care in the community, for example. Anything that ensures a smooth transition of information and records is welcome. On the broader issue, while the Government has published a paper on e-medicine, I believe we should be more adventurous in how we go about developing e-medicine and e-care in communities. There has to be a seamless transition of information and monitoring of patient flow through the medical system from the GP to primary care, to referral to hospital, both with regard to the inpatient and the outpatient, right through to step-down facilities and back to home care and supports in the home. This issue is an important component of trying to deliver that care in the years ahead.

The software and technology to deliver e-medicine exists and should be availed of. It is very expensive to keep people in a hospital setting and we have difficulties in trying to transfer people from the acute hospital system into step-down care, into the community and back to their homes with supports. It is an issue we all agree needs to be progressed, primarily for the patient but also for the delivery of care itself, as it is more expensive to keep people in hospital. I know there is a certain roll-out in terms of home care packages and traditional home helps. However, we have to go beyond that in embracing other forms of technology. We need the software packages and infrastructure placed in the home in order that the public health nurse, or others who are employed or contracted by the HSE, such as GPs and so on, would be able to monitor a patient in the home, feed that information back to a centralised system and inform the system of what medications have been administered, blood pressure, diagnostics and all that goes with that. This centralised system would allow a monitoring of the information by clinicians or qualified nurse specialists who would be able to look at the patient's vital signs and know whether medication has been administered in time, and whether the person is improving or needs further assistance. If there are concerns, a clinician can be consulted, and if a callout is required, that will happen.

I believe this is something we have to embrace. I come in here and criticise the Government, which is my role, and I also come forward with proposals, from time to time. While they are never read, they are there all the same.

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