Dr. Mark White:

It starts at the very beginning. I mentioned earlier that we need to approach this from a health system perspective. Even the plans for the RHAs are very health service-centric and not health system-centric. A perfect example is that any researcher in Ireland who wants to undertake any piece of health service research must start with ethics approval, that is, confirmation that the study they have proposed to undertake is ethical. The health system in Ireland does not have an ethics approval system. We work through the HSE and it is more than happy to provide ethics approval and ethics support for our own heath services but when you look outside the health services and into the health charities, GP populations or primary care, it becomes a foggy and grey area even just getting the authority to conduct a study. It starts at the very beginning and it then goes through. For example, if someone wanted to look at a cohort in the intellectual disability services in Ireland, the first question would be whether they are looking at the statutory patients, the voluntary patients who are in our voluntary services or the clients and patients who are supported by our charity partners. It is very difficult to capture the population that person wants to start their study at because of the disparate nature of the services we provide in Ireland. The one way of connecting that is through an electronic record or passport where, at the click of a button they could identify the cohort they want to study. If there was an electronic ethics submission for the country, they could then submit an electronic submission into a national ethics committee that would cover all sectors, not just statutory, and would not differentiate between the statutory, voluntary and primary systems. Those types of systems would enable a lot more research.

The second thing is that we tend to do a lot of inpatient or on-patient trials and research. Other countries do those but not to the same extent because they have access to the data. An awful lot of desk-type research can be done and an awful lot more modelling could be done if we had access to systems that were system-wide and not just based in the health service, for example.

It would open the doors to all types and genres of research and, more important, it would allow other European countries to come in and examine our data to see how we compare to the European averages and norms, especially when it comes to disease management. Rather than even research, it would help audit why one area uses X type of antibiotic more than other as we do not have that data, or why certain practitioners or specialists use X kind of product in the health service. We could look at the outcomes of patients and why X amount of patients survive in one region and not in another, for example. Without access to the primary data and a system-wide approach, we are going to continue in this quagmire for many years and, as Deputy Cullinane has said, fall way behind the European trajectory in this direction.