My husband is treated a Guy's which uses MyChart but his GP has no access to it because he is in a different trust. And the consultant at Guys has no access to the blood test results when they are done between appointments by the GP practice. All because apparently competition is good for patients.
It depends where the blood tests are done. If they are done in London we have an excellent shared care record - the London Care Record - which the Consultant and the GP have access to. "Hasn't looked at" doesn't always equal "can't see". It is true that, across the country we do not have a single shared care record but London is quite well served. Perhaps Rory could do an analysis of why Connecting for Health failed?
It's London (Guys is in London). Sadly neither the GP nor the hospital consultants have any knowledge of the London Care Record or if they do it's not easily accessible to them on their screen during an appointment.
I struggle to believe that. The London Care Record is used 600,000 times a month or 7.2 million times a year by clinicians across SEL. It is accessible from the patient’s homepage in Epic and EMIS (the GP system). It is one click and single sign on so no further authentication is required.Some clinicians may be hard to reach. I work at King’s with colleagues from Guy’s and St.Thomas’.
Dealing with the digital infrastructure for my healthcare is frustrating and needs a significant amount of detective work. One hospital uses ‘Patient Knows Best’ another uses another system and they don’t all tie up with the NHS app. On the app I’ve had occasions where appointments have been booked I hadn’t been alerted to - and IT systems between trusts don’t ‘talk’ to each other. In some ways very helpful but a ‘work in progress’ definitely
Patients Know Best is fully integrated with the NHS App and from this week, you can now request your GP data into the NHS App too through PKB! Finally, everything can be in one place!
PatientKnowsBest, excuse the irony, is great for blood test results, but I need MyDoctor for appointments (and it's always log into the system, jump through hoops and download a letter. why can't the message just be 'your appointment is at 10am on the 15th'? And the NHS app is great for repeat prescriptions, and in theory for looking at my patient record, but it has a tiny subset of the record. I told a GP that I had had an operation about 40 years ago, and she said she needed to know when. 'I don't need the day, just the month and the year'. So clearly their records don't go back that far, and the great digitisation exercise was far from complete.
Yes I agree - NHS app does not have complete record and each hospital seems to have different system - and I’ve only discovered them by my own detective work I’ve not been informed about them by health care professionals. Is it too simplistic a question to ask why there isn’t a central portal based on our NHS numbers?
We’ve found “Patient Knows Best” a nightmare; after having to get a new passcode 3 times, none of which worked, we’ve given up. The NHS App works well when our Hospital inputs data from consultations- this can take 3-60 days, depending on back office staffing in departments. I’d welcome a few more “suits” to support the “white coats”
I spent 5 years of my life almost 20 years ago as COO of a small company that wasn’t selected to be in the National Programme for IT which was running at that point for the NHS, I can honestly say most things took a very long time. I’m not surprised that some hospital trusts still choose to do it their own way. I am sure if Epic really wanted to be interoperable with the NHS app it wouldn’t take a full year to make it happen in terms of the technology - I suspect that the contractual agreements around it will take a long time however.
I am a long term patient in UCLH hospital and therefore inside the Epic system. I find it an excellent experience. Maybe these well funded hospitals were able to invest in superior technology, in a way that has not happened with the NHS app in the last 7 years. You yourself have taken on naysayers who opine that we can't have our data going offshore, when a massive anonymised NHS database would rapidly advance medical research and have commercial
value. Rather than complaining about the lack of an interface between a superior system to an inferior system we should be looking at why the NHS app is under resourced and still inferior to what is on the market commercially.
This brilliant summary of the craziness is so helpful. I honestly thought it was all my fault. I’m under UCLH urology so EPIC. I’m under BARTs for asthma so a bit of NHS app. I’m under Luton and Dunstable for maxillo fax. Ie jaw. Ie no platform at all. In fact just stupid texts asking me if I still need an appointment. So nuts is it that my GP and Bedford hospital cannot see the blood results which Luton did. Even tho it’s the same Trust. Arghhhh
Great post, Rory. I am with UCH's National Neurology Hostpital, Guy's for urology, and my local GP in East Sussex. None of them seems able to speak to any of the others in IT terms, so the first 5-10 minutes is always wasted telling them things which they would be able to see for themselves on a common system.
Both Guy's and NNH/UCL seem to have thier own systems and each have asked me to download their own app. In fact I use neither, which they don't like, but I take the view that it is unnreasonable to expect Parkinsonians to operate an iPhone.
Epic’s goal, IMHO, is to be the one EMR. They don’t play nice with others. They stump on startups and block competition where they can. The NHS app is competition. The NHS needs to set a timetable with fines if Epic doesn’t comply.
"One of Wes Streeting’s goals in his bid to make the NHS more efficient is to see data shared more freely between hospitals that too often seem to regard that data as their property, to be guarded jealously." I don't think that is true. Hospitals share an enormous amount of data with NHSE, Shared Care Records, Patient Apps. Sharing data is a much bigger problem for GPs as they feel personally and financially liable for data breaches and have to face up to challenge from patients who are less confident about the safety of sharing their personal data.
Missed appointments must still be a big problem judging by the number of texts, letters and phone calls I get for each appointment. I had 3 different notifications of a phone call date change, and I told them I was out of the country. That never got back to the consultant so I had a very expensive international call to Qatar.
On some letters it says any problem, call or email us, with the details on the letter. There are usually no such details. On one there was a phone number, and when I phoned it had an automated message saying this service is only for those who are too stupid to contact us online!
At the core of the problem is that they don't want to be contacted. The NHS app says you can contact the GP, but it's up to the GP to switch that on. My GP allows only phone calls to the receptionists, so if I want to tell them something, I have to print out a letter and deliver it to the surgery. Not ideal.
What the NHS needs to do asap with regard to electronic patient/hospital records is to mandate a common standard for data (e.g. NHSml short for for NHS markup language) that ALL providers of software systems are REQUIRED to support. And that ANY provider that stores patient/hospital data must be REQUIRED to provide API access to that data in the common format (NHSml). Then there can be a free market in apps, but none of them has any advantage in data access. This was clear over 20 years ago, and it is not hard to do although of course requires (a) procurement teams need to ensure contracts with bidders require these aspects and (b) the standard needs ongoing review / update by an NHS-run standards body.
My husband is treated a Guy's which uses MyChart but his GP has no access to it because he is in a different trust. And the consultant at Guys has no access to the blood test results when they are done between appointments by the GP practice. All because apparently competition is good for patients.
It depends where the blood tests are done. If they are done in London we have an excellent shared care record - the London Care Record - which the Consultant and the GP have access to. "Hasn't looked at" doesn't always equal "can't see". It is true that, across the country we do not have a single shared care record but London is quite well served. Perhaps Rory could do an analysis of why Connecting for Health failed?
It's London (Guys is in London). Sadly neither the GP nor the hospital consultants have any knowledge of the London Care Record or if they do it's not easily accessible to them on their screen during an appointment.
I struggle to believe that. The London Care Record is used 600,000 times a month or 7.2 million times a year by clinicians across SEL. It is accessible from the patient’s homepage in Epic and EMIS (the GP system). It is one click and single sign on so no further authentication is required.Some clinicians may be hard to reach. I work at King’s with colleagues from Guy’s and St.Thomas’.
Dealing with the digital infrastructure for my healthcare is frustrating and needs a significant amount of detective work. One hospital uses ‘Patient Knows Best’ another uses another system and they don’t all tie up with the NHS app. On the app I’ve had occasions where appointments have been booked I hadn’t been alerted to - and IT systems between trusts don’t ‘talk’ to each other. In some ways very helpful but a ‘work in progress’ definitely
Patients Know Best is fully integrated with the NHS App and from this week, you can now request your GP data into the NHS App too through PKB! Finally, everything can be in one place!
That’s good! Now need all hospitals to use PKB -two I use don’t 🙄
PatientKnowsBest, excuse the irony, is great for blood test results, but I need MyDoctor for appointments (and it's always log into the system, jump through hoops and download a letter. why can't the message just be 'your appointment is at 10am on the 15th'? And the NHS app is great for repeat prescriptions, and in theory for looking at my patient record, but it has a tiny subset of the record. I told a GP that I had had an operation about 40 years ago, and she said she needed to know when. 'I don't need the day, just the month and the year'. So clearly their records don't go back that far, and the great digitisation exercise was far from complete.
Yes I agree - NHS app does not have complete record and each hospital seems to have different system - and I’ve only discovered them by my own detective work I’ve not been informed about them by health care professionals. Is it too simplistic a question to ask why there isn’t a central portal based on our NHS numbers?
We’ve found “Patient Knows Best” a nightmare; after having to get a new passcode 3 times, none of which worked, we’ve given up. The NHS App works well when our Hospital inputs data from consultations- this can take 3-60 days, depending on back office staffing in departments. I’d welcome a few more “suits” to support the “white coats”
I spent 5 years of my life almost 20 years ago as COO of a small company that wasn’t selected to be in the National Programme for IT which was running at that point for the NHS, I can honestly say most things took a very long time. I’m not surprised that some hospital trusts still choose to do it their own way. I am sure if Epic really wanted to be interoperable with the NHS app it wouldn’t take a full year to make it happen in terms of the technology - I suspect that the contractual agreements around it will take a long time however.
I am a long term patient in UCLH hospital and therefore inside the Epic system. I find it an excellent experience. Maybe these well funded hospitals were able to invest in superior technology, in a way that has not happened with the NHS app in the last 7 years. You yourself have taken on naysayers who opine that we can't have our data going offshore, when a massive anonymised NHS database would rapidly advance medical research and have commercial
value. Rather than complaining about the lack of an interface between a superior system to an inferior system we should be looking at why the NHS app is under resourced and still inferior to what is on the market commercially.
This brilliant summary of the craziness is so helpful. I honestly thought it was all my fault. I’m under UCLH urology so EPIC. I’m under BARTs for asthma so a bit of NHS app. I’m under Luton and Dunstable for maxillo fax. Ie jaw. Ie no platform at all. In fact just stupid texts asking me if I still need an appointment. So nuts is it that my GP and Bedford hospital cannot see the blood results which Luton did. Even tho it’s the same Trust. Arghhhh
Great post, Rory. I am with UCH's National Neurology Hostpital, Guy's for urology, and my local GP in East Sussex. None of them seems able to speak to any of the others in IT terms, so the first 5-10 minutes is always wasted telling them things which they would be able to see for themselves on a common system.
Both Guy's and NNH/UCL seem to have thier own systems and each have asked me to download their own app. In fact I use neither, which they don't like, but I take the view that it is unnreasonable to expect Parkinsonians to operate an iPhone.
Epic’s goal, IMHO, is to be the one EMR. They don’t play nice with others. They stump on startups and block competition where they can. The NHS app is competition. The NHS needs to set a timetable with fines if Epic doesn’t comply.
"One of Wes Streeting’s goals in his bid to make the NHS more efficient is to see data shared more freely between hospitals that too often seem to regard that data as their property, to be guarded jealously." I don't think that is true. Hospitals share an enormous amount of data with NHSE, Shared Care Records, Patient Apps. Sharing data is a much bigger problem for GPs as they feel personally and financially liable for data breaches and have to face up to challenge from patients who are less confident about the safety of sharing their personal data.
For unknown reasons the Welsh NHS app, only released since Covid, contains none of the information of use to the patients or alternative doctors
Missed appointments must still be a big problem judging by the number of texts, letters and phone calls I get for each appointment. I had 3 different notifications of a phone call date change, and I told them I was out of the country. That never got back to the consultant so I had a very expensive international call to Qatar.
On some letters it says any problem, call or email us, with the details on the letter. There are usually no such details. On one there was a phone number, and when I phoned it had an automated message saying this service is only for those who are too stupid to contact us online!
At the core of the problem is that they don't want to be contacted. The NHS app says you can contact the GP, but it's up to the GP to switch that on. My GP allows only phone calls to the receptionists, so if I want to tell them something, I have to print out a letter and deliver it to the surgery. Not ideal.
What the NHS needs to do asap with regard to electronic patient/hospital records is to mandate a common standard for data (e.g. NHSml short for for NHS markup language) that ALL providers of software systems are REQUIRED to support. And that ANY provider that stores patient/hospital data must be REQUIRED to provide API access to that data in the common format (NHSml). Then there can be a free market in apps, but none of them has any advantage in data access. This was clear over 20 years ago, and it is not hard to do although of course requires (a) procurement teams need to ensure contracts with bidders require these aspects and (b) the standard needs ongoing review / update by an NHS-run standards body.
That already exists: https://digital.nhs.uk/services/fhir-apis