Patients handrd power to access own GP records

[XFool]

No, the mentioned security happens even if you quote your NHS number, although that itself isn't actually needed, you just go through a bunch more questions if you don't know it.

Not for me.

After you log into your NHS account where do you end up? Is it at https://www.nhsapp.service.nhs.uk/patient/ ? That's where I arrive and what I see is:

None of that. Apart from "Help" and "Logout".

No: "Advice", "Appointments", "Prescriptions", "Your health", "Messages".

What the...!

I just know you are not going to believe this.

I just logged in to my NHS Account, in order to check my logged in HTTP address to compare with your version. I can NOW suddenly see all of the above.

At least, I think so. I was so shocked I logged straight out again. Was I previously logging in via a direct "NHS Account Information" link? AFAIK it was just the normal "Go To Your NHS Account Login" link with no link back to "Home" on the page I could see after logging in.

I was previously, some time ago now, sent some kind of text message, now deleted (I am currently knee deep in GP, Hospital and NHS texts...), saying I had a "Questionnaire" online to answer. I ignored this.

Could this be related? Who knows?

[XFool]

Was I previously logging in via a direct "NHS Account Information" link?

NHS Account

Confusing is this!

This: https://settings.login.nhs.uk
NHS login

This: https://www.nhsapp.service.nhs.uk/login
Access your NHS services

But it is all rather like Open Banking. Just so I can see my own records do I want to allow access to my personal information to This Company & This Company & ...

No. I don't. So thanks, but no thanks!

https://help.login.nhs.uk/manage/delete/#how-to-delete-nhs-login

How to delete NHS login
NHS login settings
You can delete your NHS login by visiting your NHS login settings.

What happens when you delete your NHS login
Once you delete your NHS login, you will not be able to use it to access any websites or apps. If you are trying to delete your account with one website or app in particular, you should contact the provider directly. You may then still use your NHS login to access other websites and apps.

If you delete your NHS login, any websites or apps you have used with NHS login may keep some information about you in line with their terms and conditions and privacy notice. We may also keep some information about you in line with NHS login's privacy notice.

Um...

[Bouleversee]

Before I spend any more time on this, can anyone tell me whether the patient records include anything other than test results and similar which I think I can now get on Patient Access. What I was hoping to see was summaries of consultations with GPs and their comments which presumably are in patients' records. Is it quicker making an appointment on line than phoning?

I see that if one uses a photo of one's passport or driving licence as part of the proof of identity, one has to allow them access to one's camera and microphone. Why? Not something I'm willing to do which is why I was trying to get the 3 security items from the surgery but I'm not sure it's worth the hassle.

[mc2fool]

Before I spend any more time on this, can anyone tell me whether the patient records include anything other than test results and similar which I think I can now get on Patient Access. What I was hoping to see was summaries of consultations with GPs and their comments which presumably are in patients' records. Is it quicker making an appointment on line than phoning?

The NHS app-cum-website, Patient Access, SystmOnline, etc all just let you access your GP's records and system, and what you can see & do with them is entirely up to your GP practice.

AFAIAA GPs don't give different levels of access to the different methods (indeed, I'm not even sure they can), so whatever (GP related) stuff you can see/do with the NHS app-cum-website will almost certainly be the same as you can already see/do with Patient Access. You may want to confirm that by giving your GP a call and asking if you can see anything different via the NHS app-cum-website vs Patient Access, but I'll be surprised if they say yes.

In regards to summaries of consultations, when I first started using PA with my GP the full notes of a consultation were available, and I mean the notes the GP had clearly made for their own use. But some years ago they stopped that and now just have a (very) brief summary line instead ... I suspect 'cos the GPs' notes-to-themselves sometimes contained opinions about patients that weren't always diplomatic ...

[staffordian]

Before I spend any more time on this, can anyone tell me whether the patient records include anything other than test results and similar which I think I can now get on Patient Access. What I was hoping to see was summaries of consultations with GPs and their comments which presumably are in patients' records. Is it quicker making an appointment on line than phoning?

I checked the NHS app, for which I registered a couple of years or so ago, to find it had recently started to include my data.

But it is little more than a list of vaccines, medicines prescribed and texts sent to me from the surgery. It is certainly not (in my case) anything like a detailed summary of consultations etc.

I then checked the Patient Access app to find a similar but less complete summary there.

Neither had any detail, nor anything about a series of hospital referrals and a subsequent operation I had this July, nor any of the followup from that. All in all, a waste of time, as far as I can see.

Confusingly, my hospital trust use yet another app, Patients Know Best (PKB) to provide online access to appointment letters and consultants' correspondence...

But going back to the NHS and Patient Access apps, the whole thing seems very badly thought out. For example blood pressure readings appear in different sections, Covid and Flu vaccines likewise can be in one of two or three different sections and the information included seems patchy.

But what puzzled me was why this information has suddenly appeared; when I last looked, the app said that my patient records were not available unless I requested it from my GP surgery, which I have certainly not done.

[XFool]

I checked the NHS app, for which I registered a couple of years or so ago, to find it had recently started to include my data.

But it is little more than a list of vaccines, medicines prescribed and texts sent to me from the surgery. It is certainly not (in my case) anything like a detailed summary of consultations etc.

I then checked the Patient Access app to find a similar but less complete summary there.

Neither had any detail, nor anything about a series of hospital referrals and a subsequent operation I had this July, nor any of the followup from that.

Same with my PatientAccess: I can see some hospital appointments and test results, in other cases I seemingly cannot.

Confusingly, my hospital trust use yet another app, Patients Know Best (PKB) to provide online access to appointment letters and consultants' correspondence...

Yes. PKB is one of "Those Companies" that the NHS Account wants me to agree to share my data with if I want to be allowed to see what I presume I can (partly?) see already via PatientAccess, where there is just a single logon that I agreed to use years ago. (Who knows what implicit consents do or do not lurk behind that?)

[mc2fool]

I checked the NHS app, for which I registered a couple of years or so ago, to find it had recently started to include my data.

But it is little more than a list of vaccines, medicines prescribed and texts sent to me from the surgery. It is certainly not (in my case) anything like a detailed summary of consultations etc.

I then checked the Patient Access app to find a similar but less complete summary there.

Neither had any detail, nor anything about a series of hospital referrals and a subsequent operation I had this July, nor any of the followup from that. All in all, a waste of time, as far as I can see.
:
But what puzzled me was why this information has suddenly appeared; when I last looked, the app said that my patient records were not available unless I requested it from my GP surgery, which I have certainly not done.

As I say, what you can see/do from the online services is entirely up to your GP practice, although limitations may be either because of their choices or because they're backwards in their IT setup. In the case of referrals etc, GPs do that by writing to the hospital and the consultants report back by writing to the GP. My practice makes all those letters available and I can read them under the "Documents" sections in both Patient Access and the NHS app.

The reason that folks like you, who had more backward GP practices, are now seeing information appearing is that the govt has leaned on GP practices to pull their fingers out on it.

"Following the Government’s decision to impose the GP contract in England this year, all practices are contractually obliged to provide patients with online prospective access to their records. Practices’ contracts require them to abide by this from 31 October 2023."
https://www.bma.org.uk/advice-and-support/gp-practices/gp-service-provision/accelerated-access-to-gp-held-patient-records-2023

[mc2fool]

NHS Account

Confusing is this!

This: https://settings.login.nhs.uk
NHS login

This: https://www.nhsapp.service.nhs.uk/login
Access your NHS services

But it is all rather like Open Banking. Just so I can see my own records do I want to allow access to my personal information to This Company & This Company & ...

No. I don't. So thanks, but no thanks!

https://help.login.nhs.uk/manage/delete/#how-to-delete-nhs-login

How to delete NHS login
NHS login settings
You can delete your NHS login by visiting your NHS login settings.

What happens when you delete your NHS login
Once you delete your NHS login, you will not be able to use it to access any websites or apps. If you are trying to delete your account with one website or app in particular, you should contact the provider directly. You may then still use your NHS login to access other websites and apps.

If you delete your NHS login, any websites or apps you have used with NHS login may keep some information about you in line with their terms and conditions and privacy notice. We may also keep some information about you in line with NHS login's privacy notice.

Um...

Confused you are, indeed.

If you want to be able to see your records you have to allow someone/something to access them in order for that one/thing to present them to you. You have already chosen to allow that access by Patient Access, a product of EMIS Group, which is owned by the circa $500bn mkt cap US healthcare and insurance giant UnitedHealth Group Inc. https://www.reuters.com/markets/deals/u ... 023-09-29/

The core thing to understand is that the NHS does not hold your medical record*. Your GP does. Other organisations, like hospitals and clinics, may hold bits of it as you go in for tests, consultations and procedures, but ultimately all of it is fed back to your GP. Your GP's record is the definitive medical record for you. Nowadays, of course, all GPs hold the medical records of their patients in computer database systems, which are most often provided by the likes of EMIS and others.

Now, the NHS has edicted that all GP database systems should have a common interface (API) to allow patient information providers to access them for the patient so they can see their record. Patient Access, SystmOnline and the NHS "app" are all such providers. None of them hold your medical record themselves, they all just access your GP's records for you.

There's a couple of different main levels of access permitted through the interface; one is the everything-your-GP-allows level that Patient Access, SystmOnline and the NHS "app" use, and the other is the prescriptions-only level that the likes of Boots, LloydsChemists and other online pharmacies use if you sign up with them to handle your repeat prescriptions etc. Clearly, whenever you want to sign up to any of either of those kinds of services you give permission for them to access your GP's medical record for you.

Now, NHS Login is a totally different matter. It is a user authorisation system that allows you to use one set of login credentials for a plethora of service providers of all sorts. The providers aren't (necessarily) related and, just 'cos you use your NHS Login credentials to access them doesn't mean they see any of your information from other providers you've used your NHS Login credentials to access; they don't. It's akin to the "Sign in with your Google/Microsoft account" you see on a lot of sites nowadays.

In regards to the different levels of information and access the NHS login will give you, that depends on the level of proof of identity you've provided. It's all explained here: https://www.nhs.uk/nhs-services/online-services/nhs-login/

That page reminds me that you can get the full level of access without going through the passport/driving licence/video etc palaver by using registration details known as a Linkage Key, an ODS Code and an Account ID, which you can get from your GP or if you are already using Patient Access you can get by logging into it and clicking on your name (top right) then Account then on the "My GP practice" tab.

* There are a couple of NHS central databases related to patients, but none hold your full medical record:

The Personal Demographics Service (PDS) is the national master database of all NHS patients in England, Wales and the Isle of Man and holds non-clinical basic patient details such as name, address, date of birth, contact details, registered GP, nominated pharmacy and NHS number.

The Summary Care Record (SCR) is a national database that is created and updated from a very select set of data from the GP medical records, holding current medication, allergies and details of any previous bad reactions to medicines.

Hope this helps clear some of the confusion.

[Alaric]

That page reminds me that you can get the full level of access without going through the passport/driving licence/video etc palaver by using registration details known as a Linkage Key, an ODS Code and an Account ID, which you can get from your GP or if you are already using Patient Access you can get by logging into it and clicking on your name (top right) then Account then on the "My GP practice" tab.

That is a key point which local GP practices don't always seem to communicate.

My local practice migrated from using "Patient Access" to the NHS App, but made an appalling mess of communicating the changeover. With repeat prescriptions due every couple of months, there's only a limited window when such systems can be offline or appear to be offline. The local paper published a story about people being locked out which incurred a "how dare they criticise the NHS" reaction from the practice.

I didn't go through with the convoluted identity system and in any case I prefer using a laptop with a keyboard to a mobile phone. A bit of research found the system of using Linkage Key, ODS code and Account ID which the GP practice was sifficiently well organised to supply when I emailed to ask them for it (or maybe it was a secure message).

A link earlier does suggest it was the fault of someone in government in demanding that existing systems such as "Patient Access" be ditched. Or did GP Practices misunderstand what was required?

[mc2fool]

A link earlier does suggest it was the fault of someone in government in demanding that existing systems such as "Patient Access" be ditched.

I must have missed that, what are you referring to? I can use either Patient Access or the NHS app and I've heard nothing about my practice dumping the former in favour of the latter. Mind you, I wouldn't expect to until and unless it was imminent...

[Bouleversee]

That page reminds me that you can get the full level of access without going through the passport/driving licence/video etc palaver by using registration details known as a Linkage Key, an ODS Code and an Account ID, which you can get from your GP or if you are already using Patient Access you can get by logging into it and clicking on your name (top right) then Account then on the "My GP practice" tab.

That is a key point which local GP practices don't always seem to communicate.

My local practice migrated from using "Patient Access" to the NHS App, but made an appalling mess of communicating the changeover. With repeat prescriptions due every couple of months, there's only a limited window when such systems can be offline or appear to be offline. The local paper published a story about people being locked out which incurred a "how dare they criticise the NHS" reaction from the practice.

I didn't go through with the convoluted identity system and in any case I prefer using a laptop with a keyboard to a mobile phone. A bit of research found the system of using Linkage Key, ODS code and Account ID which the GP practice was sifficiently well organised to supply when I emailed to ask them for it (or maybe it was a secure message).

A link earlier does suggest it was the fault of someone in government in demanding that existing systems such as "Patient Access" be ditched. Or did GP Practices misunderstand what was required?

As I said at the outset, I have heard nothing from my GP about the App. but I had gleaned from the various responses(for which thanks to everyone) that one could get the registration details you mentioned from the practice and that is why I was trying to get through to the practice yesterday.
However, if I can't see the GP notes on sonsultations, I probably won't bother.

[mc2fool]

As I said at the outset, I have heard nothing from my GP about the App. but I had gleaned from the various responses(for which thanks to everyone) that one could get the registration details you mentioned from the practice and that is why I was trying to get through to the practice yesterday.
However, if I can't see the GP notes on sonsultations, I probably won't bother.

Why don't you try and get yourself live on Patient Access again? You could just try the "Forgotten your sign in details?" link on their login page as a start.

[Bouleversee]

As I said at the outset, I have heard nothing from my GP about the App. but I had gleaned from the various responses(for which thanks to everyone) that one could get the registration details you mentioned from the practice and that is why I was trying to get through to the practice yesterday.
However, if I can't see the GP notes on sonsultations, I probably won't bother.

Why don't you try and get yourself live on Patient Access again? You could just try the "Forgotten your sign in details?" link on their login page as a start.

I've already done that but it doesn't contain any info about consultations, with GP comments, which was what I was interested in, not that there have been many, or any reference to info re my IPF fed to the practice from the consultant I am under for that. All that was on there was results of blood tests a few years ago. From the article in The Times, I had assumed that I would be able to access my complete medical history but it all seems half baked. All these automated systems cost a lot of money but i.m.o. are of limited value and it seems like regression rather than progress since the days when we had our own nominated GP in the practice whereas it can be any (or none) of them now.

[mc2fool]

Why don't you try and get yourself live on Patient Access again? You could just try the "Forgotten your sign in details?" link on their login page as a start.

I've already done that but it doesn't contain any info about consultations, with GP comments, which was what I was interested in, not that there have been many, or any reference to info re my IPF fed to the practice from the consultant I am under for that. All that was on there was results of blood tests a few years ago. From the article in The Times, I had assumed that I would be able to access my complete medical history but it all seems half baked. All these automated systems cost a lot of money but i.m.o. are of limited value and it seems like regression rather than progress since the days when we had our own nominated GP in the practice whereas it can be any (or none) of them now.

Well, as I say, the information available to you through Patient Access will be up to your GP, and it's unlikely to be any different with the NHS app or any other method, but you may want to confirm that with your practice.

As I also say, it's normal for consultants to report back to your GP, by letter, and in my case my practice makes those letters available to me online, so you may want to ask your practice why they don't do the same. Actually my hospital has a policy of CCing the patient on those letters, so I get them, in the post, anyway, and it may be worth asking your consultant's secretary if she could do the same for you.

[Bouleversee]

My consultant does copy me her letters to GP. It's what the GP writes down after an appointment or after receiving a letter from a consultant or a test report (if anything) I wanted to see. I thought the patient record would incorporate everything, which my Patient Access certainly doesn't.

[XFool]

On a related issue, previously discussed elsewhere on TLF but I don't now know where:

NHS data platform may be undermined by lack of public trust, warn campaigners

https://www.theguardian.com/society/2023/nov/21/nhs-data-platform-may-be-undermined-by-lack-of-public-trust-warn-campaigners

Patients cannot opt out of personal medical records being shared, albeit anonymised, between NHS bodies

"The NHS’s new data platform could be derailed by a lack of public trust because patients are being denied the chance to opt out of it sharing their personal medical records, campaigners claim.

NHS England will announce on Tuesday that it is handing the £480m contract to operate the new software to the US spy tech firm Palantir, sparking a backlash over privacy and its “murky” past."

https://www.foxglove.org.uk/news/

[didds]

NHS England will announce on Tuesday that it is handing the £480m contract to operate the new software to the US spy tech firm Palantir,

And its no wonder (which is the point being made of course) that patients are less than ecstatic about this all.

didds

[bungeejumper]

XFool, is this the thread you meant? viewtopic.php?f=29&t=29652

"The NHS’s new data platform could be derailed by a lack of public trust because patients are being denied the chance to opt out of it sharing their personal medical records, campaigners claim.

Well, I wrote to my GP surgery a couple of years ago, instructing them not to make my records available to the the new platform, and enclosing the relevant objection form from the government. Which the surgery duly acknowledged and promised to act upon. I think the window for such objections has long since closed, though.

NHS England will announce on Tuesday that it is handing the £480m contract to operate the new software to the US spy tech firm Palantir, sparking a backlash over privacy and its “murky” past."

https://www.foxglove.org.uk/news/

From what I've read, the "anonymised" data will be so specific on dozens/hundreds of different topics that even a half-competent AI machine will be able to work out your identity within seconds, simply through a process of mass comparison. Once it's decided your name and where you live, and whether you've got the genes for cancer or early Alzheimers, it'll be able to sell that information to the insurance companies, who will be only too glad to adjust your premiums accordingly.

And that's assuming that it doesn't goof or get hacked by someone with a less benign interest.

Interesting times.

BJ

[XFool]

XFool, is this the thread you meant? viewtopic.php?f=29&t=29652

Yes it is. Thanks.

Well, I wrote to my GP surgery a couple of years ago, instructing them not to make my records available to the the new platform, and enclosing the relevant objection form from the government. Which the surgery duly acknowledged and promised to act upon. I think the window for such objections has long since closed, though.

I vaguely recall doing something online, but I have no idea how effective it was.

From what I've read, the "anonymised" data will be so specific on dozens/hundreds of different topics that even a half-competent AI machine will be able to work out your identity within seconds, simply through a process of mass comparison.

Yes, I have seen this shown in a lecture on IT security. "Anonymisation" always sounds very reassuring but it can be pretty well useless in many instances.

And that's assuming that it doesn't goof or get hacked by someone with a less benign interest.

I already feel that "Lessons will be learnt."

[stevensfo]

My consultant does copy me her letters to GP. It's what the GP writes down after an appointment or after receiving a letter from a consultant or a test report (if anything) I wanted to see. I thought the patient record would incorporate everything, which my Patient Access certainly doesn't.

My first real job was as a lab technician on the same hospital campus where I'd spent 3 weeks, following a road accident in which I'd broken a bone in my left knee. A Dental nurse worked with us and she was quite a character! She once took me to where all the medical records were kept and found my own reports from the hospital, consultants, X-rays etc. Some of the comments were bizarre and some just false. They were frequently mixing up r-leg with l-leg and I had the impression I was often being confused with another patient. On one visit for an X-ray, my leg was still in a brace and it was obvious which one to X-ray, BUT on the form it was written 'r-leg'. Despite this, they insisted on doing that leg, made me wait ages, then called me back and admitted they'd made a mistake. The comments from the consultant made it clear that this was all 'my' fault!

Just as well it wasn't an amputation!

Steve