THE BLOG

Sharing Medical Data Is Not Okay

21/01/2014 15:31 GMT | Updated 23/03/2014 09:59 GMT

There are many issues about sharing a persons personal medical data with other organisations and companies, some issues are big and others are much smaller.

For me, it causes many issues. I'm not afraid to share with the world that I have a heart condition, caused by a lack of fibrillin gene meaning my aorta just keeps expanding. In fact, that's pretty rare in itself, admitting it can stop people wanting to hire me, because even though it's controlled - I pose too much of a risk.

But it doesn't mean I want my data to be shared with health insurance companies, private medical providers and various other organisations. Not just for me, but also because of the people that I live with. I can see the fact that me having a heart condition being used as a reason to push up home/content insurance and to encourage people to get 'death protection' to help a 'vulnerable' one out in the future.

I'm not vulnerable, and the chances of my heart condition causing me damage at this age when it's controlled with medication, is about as high as it is for anybody else - pretty small.

Beyond everything else. This is my personal information. I choose to share my medical history with those that I feel need to know. Either because I want to raise awareness, make sure people understand my situation or to get something off my chest. Not because I enjoy sharing the ins and outs of my life.

There are some things in my medical past that I aren't proud of and that I aren't willing to discuss to those I deem best friends. Therefore, why would I share that with a company that doesn't either need to know or has no right to know? I wouldn't and the fact that the NHS think I would is an utter disgrace.

In fact my previous medical history should suggest to the NHS that I am far from okay with this. And the fact that companies will know what medication I am on or have previously being on, is scary. That's information I share with few people, they don't need to know.

I don't want to have people sending me information about getting products from anywhere other than a chemist. They say it wont happen and that information is being sold to specific sources, but once they've bought it, there's nothing to stop them from selling it on to more dubious figures or passing on to a dubious sister business.

I don't remember ever being asked to tick and sign a box that says 'I'm okay to see my information passed on to other providers' or did my parents do it when I was born? I don't think they did - so excuse me NHS, don't sell on my data, because if you do I'll demand all my data be printed off, binded, sent to me in the post and deleted from your database.