Access to medical data

Hinch Tue Feb 04, 2014 8:27 am

Well, I have listened to the arguments for and against but have decided to opt out of my confidential data being sent from my GP to the Health and Social Care Information Centre. I am not satisfied that my data will be secure. Neither am I satisfied that in future, with the stroke of a politician's pen, it won't be sold off to drug companies, private healthcare providers and anyone else offering money.

It is a scandal that we have to opt out, but I urged you to contact your GP to do so if you are unhappy with this.

Many GPs are concerned and their practices are advising their patients to opt out.

keithatrochdale Tue Feb 04, 2014 10:37 am

One thought that struck me is what happens if I am involved in an accident.

Surely it would be good if the A&E could access my records and find out if, for instance, I have an allergy to certain drugs etc.

But, I also share concerns about securuty and confidential data being sold off for money.

Hinch Tue Feb 04, 2014 10:50 am

This would not help A&E staff access data re allergies at all. This is a data collection exercise in which I am not convinced that you could not be identified. Your medical records will remain with your GP.

I do not trust governments of their agencies and neither do a lot of GPs.

I am concerned that in years to come, subtle changes will be made and the DVLA, Benefits Agency and virtually anyone claiming to carry out research will have access to this data. If I have a medical issue, I will discuss this with my GP, hospital consultant etc.

Try as I might, I cannot see any direct benefit to patients. Hospital and GPs already provide the NHS with enough statistical data to enable them to follow trends and plan services.

Enough is enough.

Hinch Wed Feb 19, 2014 5:34 pm

I see they've had to put this back by six months. Prepare for a government charm offensive.

Jeanie Wed Feb 19, 2014 9:39 pm

Hinch wrote:I see they've had to put this back by six months. Prepare for a government charm offensive.

Same as all our services, they tried to rush & push it through. I opted out weeks ago with all my family, but I am so surprised how many people don't even know about it, just disgusting and disgraceful Rolling Eyes

Hinch Thu Feb 20, 2014 6:26 am

Well done Jeanie. I was the first in my practice to opt out. The reception staff hadn't even heard of it.

No matter what assurances are given, I predict that your data will be sold off to anyone who wants to buy it within a few years, from those engaged in genuine pharmacological research to manufacturers of stair lifts and mobility scooters.

Jeanie Thu Feb 20, 2014 9:28 pm

Hinch wrote:
Well done Jeanie. I was the first in my practice to opt out. The reception staff hadn't even heard of it.

No matter what assurances are given, I predict that your data will be sold off to anyone who wants to buy it within a few years, from those engaged in genuine pharmacological research to manufacturers of stair lifts and mobility scooters.

You are right Hinch. I have been around a few surgeries who haven't even got the forms to fill in, so I have stood there and let them photo copy one.

It is just disgraceful how this has tried to be hushed, rushed & pushed through !!!

Striding Mon Mar 10, 2014 10:18 pm

It did take several vociferous objectors, mainly from the GP bodies to even get some 'consultation' and communication carried out, when they were calling to go further for active opting in. The explanation of the purpose and usage, and protection have been completely shot down by the revelation that several of the things that the public were assured would not happen have actually already happened with information sold on to private organisations, and the fact that the suggested encryption method is not yet a reality for most of the GP systems. From such a bad start and exposed details, it will be very difficult to convince the public, when if it was done well and properly such a measure would be invaluable to medical research.

Hinch Tue Mar 11, 2014 7:03 am

The press very slow with this one. Ive been flagging it up since December. I'm glad its now getting the attention it deserves. Wales is having none of it.

Atlas Wed Mar 12, 2014 1:17 am

Which I have to say surprises me Hinch. For as far as a set of numpties goes, this lot take the biscuit. Rolling Eyes

Hinch Wed Mar 12, 2014 8:31 am

Yes Atlas, I worked and lived in Wales for a few years so like to keep in touch. The NHS and education over there are shambolic and it doesn't look set to get much better in the foreseeable future.

Atlas Thu Mar 13, 2014 1:31 am

Indeed. And as for an independent nation making its own way in the world that's grotesquely laughable.

Very sad - but a fact. Rolling Eyes

Hinch Thu Mar 13, 2014 9:55 am

NHS Scotland are doing it very differently. They are rolling out a massive new NHS data collection project but guess what? Your details remain completely anonymous. That's the way to do it.

Nobody objects to data collection to help with service planning and research but patient confidentiality is paramount and should remain a matter for patient and the clinician. Simples.

How have NHS England got this so badly wrong?

I think that the answer lies in its rush to move towards a business focused model at the expense of being patient-centered.

cyfrifia Thu Mar 13, 2014 10:18 am

NHS Scotland seem to know what they are doing, why they are doing it, and how to do it. Defining patients into physiological types should give a better basis for what treatment will be effective for them. Do NHS management involved in this project in England understand what they are supposed to be trying to achieve? Conflating it with developing a 'business focused model' sounds delirious.

Atlas Fri Mar 14, 2014 12:49 am

Information is power. And those that can provide it at a worthwhile cost benefit both ways. What has 'people' got to do with it? Rolling Eyes

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