Revealed: how drugs giants can access your health records

[Northerner]

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]

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]

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]

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]

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]

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]

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]

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]

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 after my GP has seen them first!!
WL

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

 

[everydayupsanddowns]

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]

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]

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]

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]

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]

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]

'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]

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]

I did read a while ago that one of the west

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]

🙄

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]

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