Author Topic: 'Patients know best'  (Read 913 times)

'Patients know best'
« on: 10 September, 2021, 11:09:24 am »
Purports to be a partnership with NHS that enables patients to access their records.

I created my account and logged in.  Empty. No tests, diagnosis, scans, symptoms.

In the past 4 years I've had CT brain scan for bleeds, 2 operations (one in York, which is where the records are supposed to be for), tests for bladder cancer and I was on two long-term meds (with the usual period checks for liver function).

So 'Patients know best' seems to be either bloody useless for any historical information, or it only starts logging data from when you create an account.
<i>Marmite slave</i>

Re: 'Patients know best'
« Reply #1 on: 10 September, 2021, 12:51:43 pm »
Have you tried just registering for NHS digital access to your records via your GP? I asked pre pandemic and also requested access to my detailed records. I can see all my records as well as test results from hospitals.

Regulator

  • That's Councillor Regulator to you...
Re: 'Patients know best'
« Reply #2 on: 10 September, 2021, 01:08:20 pm »
Purports to be a partnership with NHS that enables patients to access their records.

I created my account and logged in.  Empty. No tests, diagnosis, scans, symptoms.

In the past 4 years I've had CT brain scan for bleeds, 2 operations (one in York, which is where the records are supposed to be for), tests for bladder cancer and I was on two long-term meds (with the usual period checks for liver function).

So 'Patients know best' seems to be either bloody useless for any historical information, or it only starts logging data from when you create an account.

Have you tried just registering for NHS digital access to your records via your GP? I asked pre pandemic and also requested access to my detailed records. I can see all my records as well as test results from hospitals.

As Lightning Phil says, the best route is to download the NHS app and use that functionality to gain access to your GP records.

Your GP record will not necessarily include all the details that may be included in your hospital records.  It will contain a summary (if the practice bothers to upload and code it).

You can get direct access to your hospital records *if*:

- the relevant hospital has an electronic patient record; and
- has enabled that functionality.

At the moment, that is a minority of NHS trusts.

'Patients know best' will have no more access to your GP records or hospital records than you could get directly.
Quote from: clarion
I completely agree with Reg.

Green Party Councillor

Re: 'Patients know best'
« Reply #3 on: 10 September, 2021, 01:50:23 pm »
Then what is the point of Patients know best?  (Apart from another way to sell patient's data.)

Actually, scratch that question. This is for York and Scarborough Teaching Hospitals NHS Foundation Trust, and looking on the PKB website it says:

Quote
And in the near future your:

medical correspondence
test results
care plans
hospital discharge information.

So for now it doesn't offer any info other than outpatient appointments.
<i>Marmite slave</i>

citoyen

  • Occasionally rides a bike
Re: 'Patients know best'
« Reply #4 on: 10 September, 2021, 02:06:32 pm »
Then what is the point of Patients know best?  (Apart from another way to sell patient's data.)

There seem to be a lot of these services about now, the main purpose of which essentially seems to be offloading medical admin (for online services) to a third party. My GP is affiliated with Patient Access, which you have to use if you want to order repeat prescriptions online. Previously, they were with Evergreen. I'm assuming PKB is a similar kind of thing to those.

I do have concerns about security and privacy, but that ship has long since sailed.

ETA: I just checked and their records of my medication only go back as far as when I signed up. I think it's no bad thing that they don't have access to my complete medical history. They have records of all the prescriptions I've ordered through them, but they also have a record of my Covid jabs, which I booked through the NHS website, so it's clear that Patient Access do have some access to information beyond what they are directly involved with managing.
"The future's all yours, you lousy bicycles."

Re: 'Patients know best'
« Reply #5 on: 10 September, 2021, 03:02:36 pm »
This thread has prompted me to log onto my GP site to look at my record.  I got my account a couple of years ago while seeing the GP as it was impossible to get an appointment any other way (I had to camp out on the doorstep at opening time).

Back then I could see the notes from my appointments, and it made me chuckle ironically as they were accurate but without enough detail to assist the next GP in the shared practice I might see.  (As opposed to my original retired Dr who still asked after me when he saw my mum on the bus despite it being decades since he saw me from birth, used to come for home visits at lunchtime, and was the single Dr in the local practice.)  The GP I saw at that time was excellent and a help when I needed it so I have no gripes.

Today I see that there are no records available online, including the ones I had previously seen.  I cannot book an appt online anymore due to Covid.  There appear to be lots of outstanding questionnaires nobody has asked me about and I can't be bothered to complete.  My test results are available, but I need to know the 60 day window of the test and I can't remember when I had the blood test that they never gave me the results of - it's somewhere between 8 and 5 years ago.    I can see my childhood vaccinations online now even though it's a different practice, but can't see any evidence of my covid jabs.

FifeingEejit

  • Not Small
Re: 'Patients know best'
« Reply #6 on: 15 September, 2021, 09:40:49 pm »
Then what is the point of Patients know best?  (Apart from another way to sell patient's data.)

There seem to be a lot of these services about now, the main purpose of which essentially seems to be offloading medical admin (for online services) to a third party. My GP is affiliated with Patient Access, which you have to use if you want to order repeat prescriptions online. Previously, they were with Evergreen. I'm assuming PKB is a similar kind of thing to those.

I do have concerns about security and privacy, but that ship has long since sailed.

ETA: I just checked and their records of my medication only go back as far as when I signed up. I think it's no bad thing that they don't have access to my complete medical history. They have records of all the prescriptions I've ordered through them, but they also have a record of my Covid jabs, which I booked through the NHS website, so it's clear that Patient Access do have some access to information beyond what they are directly involved with managing.

Patient Access comes with EMIS Web for primary care.
https://www.emishealth.com/products/

The functions are variable and my previous practice had a lot more turned on than my current.

The INPS/Vision/Cedigm equivalent is Patient Services

Don't know about any others, there were 5 systems accredited in Scotland and it rapidly became 2, and very probably would have been 1 if Glasgow and Clyde had made their pick first.