Friday July 17 2015 10:00 AM
I don’t remember too much from the day I got diagnosed in the Lourdes Hospital but I do recall the doctor telling me that I would have to learn to manage my MS. Back then, I didn’t even know what a sclerosis was but I suppose that over the years, I have learned to get along with my lesions- always conscious of the fact that I am at their mercy. I try to get the best out of a bad situation and keep on top of current treatments, research and therapies.
For some reason, I assumed that my illness would in turn be managed by the doctor who diagnosed me. I expected that in 2010, my illness had been registered in a massive patient database providing an online health record for every Irish citizen. I figured that the numbers would then be crunched to provide data to help plan for research, pharmaceutical and services departments. This data would be accessed when I went for any type of medical treatment so that my health status was clear to all stakeholders. Think of Big Brother for ill health….
I was shocked to find out that no such register exists! As it stands today, we do not know how many MSers there are in Ireland. There is no official HSE record. The estimate is around 8,000 but we just don’t have an exact figure.
I can imagine that all kinds of data could be extracted if the information was centrally stored and analysed. The HSE does have a plan to introduce Individual Health Identifiers in its 2015 Health Priorities and the project is on track to be delivered this summer - http://www.ehealthireland.ie. The question is “why is this only being done now?” There are probably all kinds of financial, technical and data protection issues involved but as a patient, I am more concerned that the wheels get greased and that an Irish patient register gets up and running. If Irish Water got our personal details so quickly- despite massive public disapproval- why can’t the recording of health data be expedited in the same way? I’m just sayin’!