Dr. M?ir?n Ryan:

The Deputy is absolutely right that it poses a serious challenge for us in terms of doing health technology assessments and the other types of evidence synthesis we perform to inform decision-making. One area concerns epidemiology, for example, how many patients in Ireland have a particular condition and the clinical outcomes with the system as it is currently structured, before we look to the new technology we want to implement to try to improve clinical outcomes. It depends on the area of practice. For example, in the cancer area, there is the National Cancer Registry, which is a rich source of data in terms of knowing how many people have a particular cancer and the clinical outcomes of the treatment we provide at the moment. It is rare that we have those kinds of data. In such circumstances, we end up looking to other countries with more sophisticated systems than we do, such as electronic health records, with populations or healthcare systems that are reasonably similar to ours. We have to take account of those uncertainties when using those kinds of data to make conclusions. Similarly, when looking at clinical effectiveness, the gold standard is randomised control trials, which is the international evidence base. If you had it, you would also look at real-world evidence. We really do not have real-world evidence here in terms of outcomes that countries like the Nordic countries do. They have really good observational databases and registries in which you can see the outcomes of particular interventions.

The other aspect of what we do is looking at value for money. In order to do that, we need to know what care costs. There are a lot of limitations in trying to estimate costs, what the cost of current standard of care is and what the cost of care will be when we implement the new programme. There are some databases such as the hospital in-patient enquiry, HIPE, system for the cost of hospital care, the primary care reimbursement service, PCRS for the cost of medicines and so on but there also are limitations to those databases, as I am sure the Deputy is well aware. If we had the electronic health record that captured all of the resource use along a patient's journey, that would make life much easier for us. We take different steps to mitigate the uncertainty that comes with the challenges with data.