Mr. Muiris O'Connor:

I greatly appreciate Senator Dolan's observations and contributions. I assure him that I will pass on to the HSE his recommendation that, in the context of developing these personas, we will cover the diversity of the population and include disabilities and particular conditions in order to understand how health information might be assembled and shared in respect of those disabilities and conditions. He is correct about the demographics and many of the challenges arising from the success of modern health systems over recent decades here and elsewhere in ensuring longer life but that many co-morbidities are associated with this.

The issue of the balance between privacy and the benefits of information is absolutely critical and lies at the core of the Bill, and I note the Senator's advice to get this right. He is correct in what he says. I am new enough to the health arena but I observe a great deal of caution in the health research community surrounding the use of health information and a kind of intense awareness of everything people believe they cannot do, much of which is unfounded. There is an onus on us in the Department and on the health service providers to be perhaps more intentional and more assertive in communicating the public value of health information and the fact that information to which personal details are associated, when anonymised, can generate data sets that are of enormous value in understanding particular conditions. We can aggregate this data at national level. The Bill before us takes great steps forward in allowing the cancer registry model to be applied to other areas. Were the Minister to prescribe particular conditions or a disability data set, it would be possible under certain circumstances to develop that information and derive the value from it.

The Senator also touched on patient involvement in the framing of research or research questions and in the contribution to greater collective awareness even of what lifestyles, habits, support, longevity and comfort are involved in the context of particular conditions and which new drugs are impacting in what ways. This is about the value of health information. We would like to see this encouraged and expanded for the greater good while of course protecting privacy.

I thank the Senator for his observations.