Data Harvesting of NHS Personal Data.... - NHS England: A Ca...

NHS England: A Call to Action

407 posts

Data Harvesting of NHS Personal Data....media reports say March 2014.

thermo profile image
31 Replies

The NHS have a responsibility to protect our data...Not to trade it to unscrupulous third parties- seeking to harvest our personal data records.

Furthermore these records are still protected by the Computer Data act.

Complain to your M.P.

OPt out before March 2014.

Written by
thermo profile image
thermo
To view profiles and participate in discussions please or .

The ability to reply to this post has been turned off.

31 Replies
thermo profile image
thermo

Lloyds pharmacies acting like G.P's seeking personal data for their database.

Hello

Generally I understand when we go for a prescription at the surgery we have the right to have the prescription picked up, or sometimes we can have the script made up by an on site chemist.

In my old town and here the GP will send the prescription to whoever we wish as long as the chemist is in town.

Some GP surgeries actually have their own associated chemist on site like mine, they also have a chemist on site. We have a choice where we go.

Today chemists not attached to the surgery record your medications and will have a chat regarding contra indication associated with all the medications you take as the medications you take get all mixed up and can cause further problems, if you want that service it can be very informative and the chemist will watch your script because of this.

Sometimes if you have a pre-payment certificate or do not pay that will also be on their computer, this will save time when you pick up the script and they will also retain your home address as a security. This information should remain private. If you want to not allow them too keep this information you will need to move your script around, although again they need too keep your address if something goes wrong so I do not know how they could not take that information down as the department in prescription Pricing will still need that information from the script including your GP Surgery

Due to above I cannot see how they cannot take down information, if you where to get solicitation from the chemist that would be wrong and I have never seen that happen. The only time that can happen if like Boots they have their own web page, you can use that site to explain medical condition, sometimes because they have your email address.

that is the only time they contact me as I do research on medical conditions.

Please do not worry

BOB

saloplass profile image
saloplass in reply to

The pharmacist these days gets paid for discussing your scripts with the patient. Now isn't that a surprise???

KURSK profile image
KURSK

I thought that everyone, was going to have an Opt out. has that now been scrapped.?

Maisie1 profile image
Maisie1 in reply toKURSK

You should still be able to opt out I have

KURSK profile image
KURSK in reply toMaisie1

Are we still getting a notice from the NHS, or do we have to request one.?

Maisie1 profile image
Maisie1 in reply toKURSK

I got one from my GP

KURSK profile image
KURSK in reply toMaisie1

Thank you.

Maisie1 profile image
Maisie1 in reply toKURSK

I should ask the receptionist or your GP for one. I have got some mental health issues and I don't want everyone knowing

John_Mills profile image
John_Mills in reply toKURSK

Every patient has the right to opt out.

in reply toJohn_Mills

Yes, that is my understanding and we got a leaflet saying that.

etinkwah profile image
etinkwah in reply toJohn_Mills

The vote should be to opt/in their way is railroading the patients same as they are doing to the NHS staff

manzelka profile image
manzelka in reply toKURSK

Your GP surgery should have forms that you can fill in to opt out. I opted out so did my husband as our son sent me a link to download a form to fill and take to our GP surgery. They did have some forms there but they weren't very prominently displayed. And since i am fortunate not to need the doctor very often(its my husband who has CLL) i very rarely go there.

I probably would not have found this out but for our son.

wendydee profile image
wendydee

I wouldn't mind them sharing data IF they allow me to see what I've got on my medical data, to check for accuracy, before they share it.

However, when I was on my three year quest to find out what was wrong with me, when I was experiencing some very strange symptoms, between 1999 and 2002, I saw it written on my notes 'TATT' which I believe is the medical code for a time-waster. They also said I was menopausal, had anaemia, and was stressed from my job. I ended up being diagnosed with ovarian cancer.

I was so lucky to survive this, it was a slow-growing form of the disease. I have no reason to think that the TATT label isn't still on my notes. I resent it being there. I will write to my GP and outline my concerns and very likely opt out.

Maisie1 profile image
Maisie1 in reply towendydee

This is my concern. They say they are safe but I am not convinced

in reply towendydee

I agree absolutely, although we have a right to see our medical records that is seldom made clear and often screens are intentionally turned away so we do not see, then asking can seem like we are being awkward.

wendydee profile image
wendydee in reply to

I've written a reasonable, even-toned letter to my GP, outlining my. On earns and asking to see my medical records to check for accuracy........not holding my breath, but I'll keep you posted!

in reply towendydee

Yes, you are entitled to see them so I hope it works out well. Perhaps we should retain our own health records and then we could choose whether and when to show medics!!

brindiesmum profile image
brindiesmum in reply towendydee

I hate to feel you are so unhappy re. TATT, this is a shortcut for feeling:TIRED ALL THE TIME". Hope this makes you feel better

wendydee profile image
wendydee in reply tobrindiesmum

I wasn't tired all the time, I had a demanding job, but my legs felt REALLY heavy and aching when I walked upstairs or up hills. I nearly passed out a few times, I had ovarian cancer, I knew something was very wrong, but the GP kept brushing it aside as something else. I hope GPs are better informed now. Since retiring, I do voluntary work, raising awareness of the signs and symptoms, including poster to GPs surgeries. I have to say, the take-up isn't great.

John_Mills profile image
John_Mills

Without data there is no advance in medicine - back to the old days of quack "doctors" making ridiculous claims for their "cure". Because there was no collection of data, nobody could say whether or not snake-oil is a cure for gout or baldness or impotency - or whatever. The sort of information that will be "harvested" or collected from patient records is eg. how many people having drug X for illness Y get any benefit from it, or does it cause side effects and if so what are they & how severe. All this data is not personal, not about individuals. But careful analysis of this mass of data can lead to better diagnosis, better treatment, better drugs with fewer side effects.

Maisie1 profile image
Maisie1

John-mills I agree with what you are saying. My only concern is that only certain people ca access my records and will need strict guidelines in order to do so. If it comes to insurance companies and employers looking without our permission I would be concerned. Of course without certain data we would not have moved on

in reply toMaisie1

I agree. We all know that anyone who has the right to access the system can read everything about us, not just the things they need to know. I would really object to someone working as a clerk and perhaps being my neighbour reading about my personal history, particularly if the issue is a mental health one which carries so much stigma still.

etinkwah profile image
etinkwah

I totally agree it should be opt/in ,the government should be protecting the public ,you can opt/out but they are saying anybody that don't vote is opting/in which is totally undemocratic we don't have elections that way.

John_Mills profile image
John_Mills

All personal data is covered by the Data Protection Act - whether it is on paper or electronic.

If anyone feels strongly that for any reason they don't want their anonymised data to be included all they have to do is opt out - not difficult. Most people will not have any problem with having their anonymised personal data thrown into the pot. Of course, if this mass data collection produces great advances in diagnosis and treatment, those who chose to opt out will also want to opt out of those benefits - Yes??

Some GPs may not feel comfortable with this new system as it will be a way of identifying how they perform in terms of looking after their patients - something that is currently very difficult to measure. If you think how the mid-Staffs hospital trust was able to perform so badly for so long, what chance is there of picking up individual under-perfoming GPs unless you have the data?

All the above comments were made over quite a few weeks and before it was announced last week that the harvesting of this data has been put back six months while it is further debated. However I would still like to add a comment myself. Firstly GP's have no control over whether the information is harvested or not. I assume it works a little bit like a web crawler and just goes along and picks up all the data from the servers where NHS data is kept. Opting out, up to the Government backing down for six months meant that the records would be tagged by the GP practices to say that no identifiable data including NHS numbers must be stored, the actual records would still be uploaded to the central database.

Up to just a month ago I had absolutely no idea this was about to take place. We were supposed to receive a "junk mail" type leaflet through the door explaining the proposals by the NHS, nothing ever came through my door. Many people who I spoke to when I did find out knew anything about it and their records would have been uploaded including all identifiable information completely without their knowledge. This is fundamentally wrong, is this not supposed to be a free and democratic country? I myself have opted out, on principal, as I will not have the country I live in ride rough shod over my wishes and do things with my personal information behind my back. Those of us who have now opted out need to keep a very careful eye on what happens six months down the line and whether our opt outs will be revoked, again without our knowledge and against our wishes. Please don't blame your GP's for this, it was completely out of their control.

sandrad profile image
sandrad

Is this applicable to Scotland? I'm getting confused re: sale of medical records - is it England only?

in reply tosandrad

I think it only applies to NHS England

sandrad profile image
sandrad in reply to

Thanks :)

manzelka profile image
manzelka

I would have no objection if the data was totally anonymised but it won't be.

Also since various government and civil service employees have lost memory sticks,files etc in the past i wouldn't trust them with my medical information unless it was totally anonymous.

Both my husband and my self have opted out.

Since it wasn't well publicised, i only found out from our son who lives outside of this country.

etinkwah profile image
etinkwah

I have mentioned this to different persons and have not had a reply .On the 24th Feb 2014 in the Guardian which they got from Daily Telegraph that 47m Hospital in Patients between 1997-2010 had their medical histories accessed by date of births and postcodes by Insurance Society to refine their premiums you could say harvested If this is true whom can we trust

The ability to reply to this post has been turned off.

Not what you're looking for?

You may also like...

Medical details not safe any longer

Today I got a very convincing phone call from the ''NHS Pharmacy initiative Scheme.'' I kept them...

A message from Sir Bruce Keogh on the Urgent and Emergency Care Review

I want to bring you up to speed with progress on the Urgent and Emergency Care Review that I...
UrgentCareReviewTeam profile image
Keogh Team

Thyroid Conditions

Why have our GP's not been fully educated in thyroid conditions? There are so many people suffering...
Jax13 profile image

Abolish screening programmes for the worried well and start treating the sick

I would like to abolish quotas and targets for the cervical screening programme. Forcing 80% of...
Adawells profile image

Present state of NHS

Well my friends as the news says another winter and our NHS is struggling to meet demand. The...
katieoxo60 profile image

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.