Dr. Jenny Mack:

I completely empathise with those families and the individuals who are suffering from that condition. As Dr. Kavanagh and Ms Costello outlined, our role in the Institute of Public Health is more looking at prevention and population health at that level. The work we do does not necessarily relate to service delivery and access to treatments but there is a lot of opportunity by being on an island and having that North-South co-operation when it comes to population health and prevention.

I refer to folic acid fortification, for example, and the prevention of neural tube defects, which are very serious conditions such as spina bifida. In the UK and then in Northern Ireland we will be moving to the mandatory fortification of flour with folic acid as a preventative measure to prevent the development of neural tube defects in utero . Part of that work is seeing if there is an opportunity to see if there is an all-island register of congenital anomalies. That is an example of how we can work North-South to collect data that is meaningful to those families and individuals who have conditions. We can look at the numbers and ask what service issues we need to think about, what are the service development issues and access to medications. That is where the data could really help us.

To answer the previous question about population health datasets, we have the opportunity, if we are seriously considering a North-South approach to population health datasets, of thinking about the information we need to understand the health of the population in Northern Ireland and in Ireland. It is beyond looking at very important data on mortality, hospital admissions and disease burdens; it is also looking at the wider determinants of health such as the environmental conditions we live in, the economic conditions and the housing standards. There are a lot of issues that are very real to our communities that we know we can impact on our policies that are very relevant to population health and understanding the health and lives of people in different settings and different geographical locations. That is the opportunity we have in the institute to try to push forward a North-South approach to data collection.