Sharing Medical Information

[granny grump]

How do others feel about their medical information being shared and have they chose to opt out? I an undecided but leaning to not sharing it as I do not trust it not to be used for other purposes despite what they say and unsure how safe it will be.

What difference will it make if I do opt out? Am I being paranoid?

[emmie]

various sources

http://www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy

[boxtops]

Thanks - well, it'll be no different from everything else really, and some NHS providers ARE private organisations these days, some of our NHS work is undertaken in BUPA hospitals. It doesn't bother me sufficiently to want to opt out - as I said at the beginning, I'd rather my medical records were available to wherever I happen to need the care. That won't happen if there isn't data-sharing.

[emmie]

i would if the private medical companies have access to very private info, say for example your mental health, or a spell in a mental health hospital.

[Baldric]

Will not be opting out for the same reason boxy.

[Mamyalynne]

Some FAQs here...



http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/cd-pati-faqs-06012014%203.pdf

[emmie]

what happens if its known you have a certain condition, and can't get insurance because of it.

"
Drug and insurance companies will from later this year be able to buy information on patients – including mental health conditions and diseases such as cancer, as well as smoking and drinking habits – once a single English database of medical data has been created.

[Mamyalynne]

In the FAQ link it lists how there are different levels of sharing - one way could be....


In the Northwest area of Blah there are 10,000 patients suffering from XYZ.

So more of a demographic rather than...


In Rochester, Mr Timpson has XYZ.

[jno]

emmie's concerns aren't unreasonable. From previous experience of government department computerisation we know

- there'll be massive cost overruns
- it'll never quite work
- somebody will hack it (or just lose their laptop on a train).

For all that, I'm still not bothered, mbecause I think gains outweigh losses

[emmie]

take for example travel insurance, supposed that this info is now in the open domain, and you need travel insurance to go to Spain, they look up that you have a condition, say osteoarthritis, what is to stop them saying you won't get the cover as you have a condition that cause you to make claims if you need urgent medical care in Spain. I can't think of a better example, perhaps some can see what i am getting at.

[Bazile]

emmie , as jno says your concerns aren't unreasonable .
However , i'ts a matter of weighing up the pros and cons .

In the particular example you give , there are a number of insurers out there , who specialises in cover for people with medical conditions

[emmie]

maybe, but i am concerned that non medical people can be looking at your entire medical history, which i am not comfortable with at all.

[Peter Pedant]

Boxie

the last computer info cock-up the one that wasted £ 1bn and no system, one of the defects was that they couldnt limit the access once you gained entry to the system.

[boxtops]

But emmie, you're supposed to declare those conditions anyway when you sign up for travel insurance.. so as long as you're honest, there's nothing new to learn from your medical records. As it is, they just write to your GP if they need any further information, they do that already.

[boxtops]

Peter, I know :-(

[SIRandyraven]

I,used to do IT work for a company back in 2001 that sold medical data. It was owned by three Doctors. They had a license to collect data from GP surgery , strip off data that could ID the patient and then created a database , that they sold to medical,research about the globe. Hundreds of thousands of records.
They also helped create sample searches ...ie how many people on a certain drug , lived for x years with condition ...