# Revealed: how drugs giants can access your health records



## Northerner (Feb 9, 2020)

The Department of Health and Social Care has been selling the medical data of millions of NHS patients to American and other international drugs companies having misled the public into believing the information would be “anonymous”, according to leading experts in the field.

Senior NHS figures have told the _Observer_ that patient data compiled from GP surgeries and hospitals – and then sold for huge sums for research – can routinely be linked back to individual patients’ medical records via their GP surgeries. They say there is clear evidence this is already being done by companies and organisations that have bought data from the DHSC, having identified individuals whose medical histories are of particular interest.

Concerns that the data is not truly “anonymous” have been raised by senior NHS officials, who believe the public are not being told the full truth. But the DHSC insists it only sells on information after thorough measures have been taken to ensure the complete anonymity and confidentiality of patients’ personal information.

https://www.theguardian.com/technology/2020/feb/08/fears-over-sale-anonymous-nhs-patient-data


----------



## mikeyB (Feb 12, 2020)

It’s not so much whether it’s truly anonymous in the first place. It’s what they do with the information, and to whom do they sell on the info.


----------



## Abi (Feb 12, 2020)

And when a district nurse sent a work related text with patient details and a third party accidentally got hold of her phone , she or her received a large fine for breach of GDPR... says it all
If the powers that be are making money from your personal and my personal data then that money can be used to ensure that the NHS still pays for our medication in the event of a US trade deal increasing cost of pharmaceuticals- if not we should sue...


----------



## Ralph-YK (Feb 12, 2020)

An annoying thing about this is the difficulties we can have getting info from HCP. And accessing our own records. Getting the results of any tests has always been an issue. And we actually know about them to try.


----------



## trophywench (Feb 12, 2020)

Quite a lot of doctors now publish patients results on a website these days - even ours! though never the first to do anything that modern.  Just annoys us both that when a hospital consultant orders tests (like my Diabetes clinic and husband's PSA tests while he's still 'under' the hospital) we don't have any access to them at all until the consultant decides to tell us.


----------



## mikeyB (Feb 14, 2020)

When I lived on the beautiful but a tad remote Isle of Mull, I logged on to MyDiabetes MyWay, which collates your diabetes related blood results (including renal function) in easy to read charts and graphs. They got the results as they were reported from the laboratory, so, if anything, sooner than the GP. 

This service, no doubt, is confined to NHS Scotland, which has a fully integrated IT service. (This meant that whether I went to a GP or hospital in Inverness or Stranraer they could access my medical record. NHS England, take note)


----------



## Ralph-YK (Feb 14, 2020)

trophywench said:


> Quite a lot of doctors now publish patients results on a website these days


I'm signed up for the online thing. I can manage appointments (including adding info when making appointment) & order repeat prescriptions (and send message about prescriptions).
The main account screen has lots of options. Many of which are disabled. Including test results & anything to do with my records.


----------



## grovesy (Feb 14, 2020)

mikeyB said:


> When I lived on the beautiful but a tad remote Isle of Mull, I logged on to MyDiabetes MyWay, which collates your diabetes related blood results (including renal function) in easy to read charts and graphs. They got the results as they were reported from the laboratory, so, if anything, sooner than the GP.
> 
> This service, no doubt, is confined to NHS Scotland, which has a fully integrated IT service. (This meant that whether I went to a GP or hospital in Inverness or Stranraer they could access my medical record. NHS England, take note)


I read quite a while ago someone in either Somerset or Dorset saying they were getting there as well . Though I have only seen Scots mentioning it . I think we all should have it.


----------



## Wirrallass (Feb 15, 2020)

grovesy said:


> I read quite a while ago someone in either Somerset or Dorset saying they were getting there as well . Though I have only seen Scots mentioning it . I think we all should have it.


I totally concur with your thoughts grovesy. I can only order my repeat scripts on mygp app but that's all. It won't allow me access to my blood or xray results or anything else for that matter. I've spoken with reception about this but they say their system hasn't been upgraded to allow patients to view their medical records.

However I can obtain copies of the results at my behest but only a_fter _my GP has seen them first!!
WL

Edited to add ~ I can make appointments on the app.


----------



## everydayupsanddowns (Feb 16, 2020)

Ralph-YK said:


> The main account screen has lots of options. Many of which are disabled. Including test results & anything to do with my records.



You have to ask them to ‘unlock’ the records section at my surgery, which they did for me, and now I can see my results as soon as they are in the system.


----------



## trophywench (Feb 16, 2020)

Took our surgery years to get all the test results online and viewable by the patient - they said they were getting it done so I 'filed it' at the back of my grey matter behind the end row of filing cabinets - when about 2 years later a poster went up to say they were there - and they were!

For every test result so far that is on there, for either me or my husband, there are rather helpful explanations and suggestions as to What does this result mean? so that bit will say, if you get a test result over 0.00000001 for this, then you have a severe shortage of whatever it is; between 0.000000000000001 and 0.9 then that's normal and above 0.9 it may be found that you have a shortage of X (or alternatively an excess of Y)

They do follow these up and eg ask you to have another blood test to check that result.  Then when the second one comes out the same, tell you they're  sending you for an ultrasound scan on this or that bit of you to make sure you haven't got something dire.  Or in the 1 in a 10,000 chance that you do have whatever - they and you can deal with it.

Works well for us, despite the fact that only yesterday the receptionist told husband the first available GP appointment she had, to actually book, was 1st March.  For him, a GP was actually ringing him before he arrived home!


----------



## grovesy (Feb 23, 2020)

everydayupsanddowns said:


> You have to ask them to ‘unlock’ the records section at my surgery, which they did for me, and now I can see my results as soon as they are in the system.


My surgery haven't unlocked the results. There are other things that are locked too!


----------



## silentsquirrel (Feb 23, 2020)

Nor mine.
In theory I can get a printout of results, but it isn't easy.  They have to be approved by GP - my named GP only works 2 days a week - and last time it took me several lengthy phone calls and 2 or 3 visits before I had the printout.  I was left feeling very cross and frustrated, and that I was being a PITA for insisting on having them.


----------



## everydayupsanddowns (Feb 23, 2020)

silentsquirrel said:


> Nor mine.
> In theory I can get a printout of results, but it isn't easy.  They have to be approved by GP - my named GP only works 2 days a week - and last time it took me several lengthy phone calls and 2 or 3 visits before I had the printout.  I was left feeling very cross and frustrated, and that I was being a PITA for insisting on having them.



What a nuisance for you and a lot of extra (needless) effort for them!

It used to irritate me when I would ask for results and get told ‘normal’. I sometimes think we must be a peculiar sort of patient, who much prefer the actual numbers rather than the vague “there there, don’t you worry your pretty little head about it” vagueness.

Perhaps it would be worth adding it to the list of things to chat about when you next see your GP, to explain that you have enough experience of your condition and the various regular checks that you’d prefer access to the actual results electronically along with the reference ranges.


----------



## Neens (Feb 23, 2020)

mikeyB said:


> When I lived on the beautiful but a tad remote Isle of Mull, I logged on to MyDiabetes MyWay, which collates your diabetes related blood results (including renal function) in easy to read charts and graphs. They got the results as they were reported from the laboratory, so, if anything, sooner than the GP.
> 
> This service, no doubt, is confined to NHS Scotland, which has a fully integrated IT service. (This meant that whether I went to a GP or hospital in Inverness or Stranraer they could access my medical record. NHS England, take note)


I have had the leaflet information from DN (dx in Dec) and it cites MyDiabetesMyWay or something very similar which does what you have described. I haven't as yet attempted to sign up/log on - but maybe we did adopt it or maybe we are accessing the NHS Scotland site. It is now included in the pack given on diagnosis at least at my surgery.


----------



## trophywench (Feb 23, 2020)

'My Diabetes My Way' is an NHS Scotland initiative which has never made is further south than that flipping wall that some bloke , think he was called Adrian, had built a while ago!


----------



## silentsquirrel (Feb 23, 2020)

If you google they seem to have been trialling it in Somerset and very recently launched in Greater Manchester/Wigan.

Let's hope it spreads quickly to all areas.


----------



## grovesy (Feb 24, 2020)

I did read a while ago that one of the west


silentsquirrel said:


> If you google they seem to have been trialling it in Somerset and very recently launched in Greater Manchester/Wigan.
> 
> Let's hope it spreads quickly to all areas.


Unfortunately I doubt it will be spread to the rest of the UK quickly. It has been available in Scotland for a few years.


----------



## silentsquirrel (Feb 24, 2020)

grovesy said:


> I did read a while ago that one of the west
> 
> Unfortunately I doubt it will be spread to the rest of the UK quickly. It has been available in Scotland for a few years.


I had a vague memory of reading something a while back about an English county trialling it, which was why I googled, had thought it was possibly Dorset so not too far out with Somerset!
"Quickly" was meant in a relative way relating to NHS - perhaps 10 years?


----------



## grovesy (Feb 24, 2020)

Some CCG s seem to be slow to roll things out.


----------



## Ralph-YK (Feb 24, 2020)

My area uses System One. That's supposed to allow access to test results and medical records. It's not actually available. They're still listed. Along with Request Medication and Book/Cancel an Appointment. Both of which do work.


----------



## grovesy (Feb 24, 2020)

Ralph-YK said:


> My area uses System One. That's supposed to allow access to test results and medical records. It's not actually available. They're still listed. Along with Request Medication and Book/Cancel an Appointment. Both of which do work.


Mine uses that too but tests say Surgery has blocked.


----------



## silentsquirrel (Feb 27, 2020)

everydayupsanddowns said:


> What a nuisance for you and a lot of extra (needless) effort for them!
> 
> It used to irritate me when I would ask for results and get told ‘normal’. I sometimes think we must be a peculiar sort of patient, who much prefer the actual numbers rather than the vague “there there, don’t you worry your pretty little head about it” vagueness.
> 
> Perhaps it would be worth adding it to the list of things to chat about when you next see your GP, to explain that you have enough experience of your condition and the various regular checks that you’d prefer access to the actual results electronically along with the reference ranges.


Thanks, Mike.  I actually saw my GP yesterday, double appointment as several things on my list - meds review (discussed self-monitoring BP with a view to possible slight reduction in BP meds), frozen shoulder ( my diagnosis following reading loads of lengthy threads on here was confirmed, referral to physio) and recent increase in tremor in hands (referral to neurology).

After all that I did query the surgery policy on test results.  She was sympathetic, but gave me the impression that I was very unusual in wanting to know numbers, not just "normal" etc.  No imminent change likely.  Sigh.....


----------



## everydayupsanddowns (Feb 28, 2020)

silentsquirrel said:


> After all that I did query the surgery policy on test results. She was sympathetic, but gave me the impression that I was very unusual in wanting to know numbers, not just "normal" etc. No imminent change likely. Sigh.....



I think you should press for access if it would help you. I believe it’s certainly something they can ‘switch on’ because I think most of the Patient Access systems have switched over to a similar framework (with similar default switched off options!).

You can say that you have been living with your condition for x years, and are well used to the results, reference ranges and how to interpret them. You would like the information, because you keep records of it separately to track your progress and inform your self management, and that if you have access directly you won’t have to be such a bother to them. That’s pretty much what I did.

Hope you can get access to your information without too much hassle.


----------



## Lilian (Feb 28, 2020)

For those of you who cannot see your results, order prescriptions, see 'short' records etc online, this should have been put in place by the end of March 2016 (or 2017 not sure) in accordance with the Data Protection Act.     The people to report this to are *england.patient-online@nhs.net* If you give them the name and address of your surgery they will contact them to find out why and if they are having any problems will assist them in overcoming them. This is for England, so not sure about Wales and obviously not Scotland.


----------

