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Individual Health Identifiers

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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’!

Author: Joan Jordan

Tags: ms, health, hse, record, register, data

Comments

Declan

Friday July 17 2015 14:59

Great read Joan. Well done

Sheila Ramanan

Saturday July 18 2015 09:03

Well said Joan. They can't make money out of your idea but it would greatly assist medical treatment and facilities if there were such a database. Great blog, as always.

Niall

Saturday July 18 2015 18:36

Great blog, Joan, on another important topic.
In this age of big data analytics progress, how can there be no plan to even collect data on patients, their medical experiences, medicines used, symptoms experienced, etc.?
Very frustrating, and simply not good enough.

Ronny van den Berg

Sunday July 19 2015 14:37

Joan great blog as per usual your right it has been 8.000 as longs as I remember yet more and more people are diagnosed with MS surely the figure cant stay the same ???

Niamh

Wednesday July 22 2015 22:17

Insightful read as usual Joan - I'm kind of shocked that information isn't recorded in a central database. Surely if any headway is to be made this information is essential for medical research - patient stats, medication etc. Hopefully it is sorted soon.

Joan Jordan

Wednesday August 05 2015 10:10

Great news on individual health identifiers in today's paper http://www.rte.ie/news/2015/0805/719254-health-identifiers/

Willeke

Friday August 07 2015 20:06

I agree with everyone's opinions.

In this day and age of smartphones, laptops the size of a sheet of paper and other wizz-things, one of the most basic data gathering systems just doesn't exist.

Mindboggling... just mindboggling :)

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