Whether you can see correspondence from hospitals etc is entirely the choice of your practice. Some practices allow it, others do not. Equally, the choice of how many appointment slots are released for online use is made by your practice. The tech's fine - the issue here is how the practice uses it
“ The pandemic has accelerated the digitalisation of the health service”
Well…..only insofar as we have covid details on an app. Prior to the pandemic I could book an appointment with my GP via the NHS app. My surgery used the pandemic as an opportunity to remove that option so they could gatekeep more ferociously and everything became telephone calls, unless the receptionist deemed it urgent. Feels like things have gone backwards.
Why should anyone need to keep a Personal Health Record? Because nobody else will do it for you.
There are several apps which give access to a someone’s medical history held in their GP records, and you can always apply to get a copy of your hospital medical records.
However, there is not a unified medical records system in the UK. Hospitals do not share records with each other, and an individual hospital does not share their medical records with the patient’s GP.
GP records only include what has been entered into them by the practice, and not every practice is that diligent at entering all data. Access to hospital medical records is not easy, you have to apply in writing, you get a paper record and there may be a charge. If you are treated at more than one hospital, it means several request need to be made. And then thousands of hospital records are lost every year.
Medicine is not the same as Health, even though they are often used synonymously. Medicine is part of Health, but not the whole.
Health is a much wider concept. We all have health related events where records may be kept but which are not and could not be entered into our electronic medical records, even if a unified electronic medical record were available.
For example:
Domiciliary care visits for the elderly or housebound. What agency provides the service, who are the people involved, when do they visit, what do they do?
Dental treatment, people change dentist frequently but a record of treatment never follows them. Dental abscess can lead to ill health so people should keep a record of dental problems as well.
Private online video consultations, becoming increasingly popular but not recorded.
Stress counselling provided through work as part of a wellness package.
Private physiotherapy, osteopathy, and sports medicine, perhaps provided through a sports club or gym
Alternative medicine, holistic or naturopathic treatment
Cosmetic operations, fillers etc.
Covid - have you had symptoms, how long did they last, have you had a test? (In the UK a GP is not informed if someone has had a test) etc.
And then there is mental health. In general anxiety and depression do not suddenly appear, they start gradually, but by the time someone needs help, the origins can often be lost in the acute moment. Having a long term record can help therapists understand people’s problems and let them seek a solution together.
None of the current systems, either provided by the state or commercial companies, covers the full range of an individual’s long term health history.
Given the wide diversity of situations, a health diary is the ideal way to keep track of events.
The Health Diary
A place where where people record any health event or mood, regardless of whether professional advice is needed or not, and which forms the basis for a lifelong record.
It functions like any electronic diary, though with templates to make recording different events easier and more consistent.
Not only is it a record of all health related contacts, it can help in other ways, to spot early signs of disease, provide a record for chronic illness and assess progress post operatively.
This should be at the core of the Personal Health Record and the starting page for any system.
The pandemic has thrown a very harsh spotlight on the lack of joined up information systems and systems thinking throughout the NHS; thankfully things are beginning to move now to try to consolidate, not only those systems the various hospitals, clinics, surgeries & "ologies", but most importantly what the patient can see (letters, results, appointments etc.) to manage their own healthcare and how they can gain access to the information in one place.
Also in the mix is the healthcare information used by Local Authorities in the provision of Social Care as unsurprisingly, the majority of Social Care clients will also be in receipt of complimentary NHS services.
Personally I share your frustrations in dealing with multiple organisations and disciplines all of whom have taken a different approach to what a patients should (in their view) have access to and how it might be made available. I have access to PatientView, now being replaced by Patients Know Best by some Trusts, but frustratingly, not by all; as well as SystmOne, the NHS app and, soon another known as MyDCR which is the patient portal for the Dorset Care Record (DCR).
The DCR is an external application linked to the NHS Trusts in Dorset as well as the two local authorities and is intended to fill the gap left by difficulty in sharing patient / client information between the NHS & Adult Social Care. The Wessex Care Record, formally the Hampshire Care Record, is similar in function and there are many others dotted around the country. These applications are better than nothing but in reality, they are all costly, stop-gap, temporary applications that have only come about by the strategic failure of the NHS to grasp the nettle of secured, patient information sharing over many years.
On the brighter side, I understand the NHS is developing their main patient application (the NHS app) and taking input from CCGs and other bodies to define its strategy more clearly. One of those aspects is the scope of its remit in terms of its organisational (trusts, surgeries etc) inputs with a view to consolidating them into a single patient view.
That said and given the complexity of our legacy healthcare systems and the plethora of stop-gap local measures that have been developed & deployed over many years, I'm not hugely hopeful this information birds nest will become untangled anytime soon.
I'm an optimist by the way, in case you wondered :-)
It's an absolute car crash. It's easy to underestimate the scale of the challenge, but it's hard to figure out how this could be a bigger mess. Seems like everyone is having the same experience and I'd assume, if they're commenting here, they're technically literate enough to have a chance of navigating these systems. That's only going to be a small % of the overall audience.
Aside from the potential health dangers of heavily siloed information, the opportunity for bad actors is enormous. I had a discussion with one of the providers who were asking me to register to organise a hospital appointment with no obvious link to the hospital involved. I had to email the hospital and check their Annual Report to figure out there was actually a relationship between the two organisations. Your data in there (many, many) hands! 😱
Rory, I would love to see one of your well-researched "how we got here" explainers. There must be many influential people in your twitter followership who could be interviewed. My dim understanding is that the NHS National Programme for IT (NPfIT) from 2003 onwards was ambitious along these lines, but the procurement was botched and only fragmented delivery achieved. Apocryphal stories include it having lower procurement priority than plasters and dressings (because the yearly spend was lower, taking little account of the higher complexity). The hangover seems to me to be no appetite for a big programme that holds it together and instead these fragmented and localised systems.
You have touched a nerve with your reference to a lack of joined up digital information. I shall never forget sitting in an A&E whilst waiting for my Father in Law to be admitted one Saturday evening by the wonderful team at Nottingham Queen's Medical Centre. An ambulance paramedic arrived to hand over a patient, opened his lap top and started dictating the records to a senior nurse who typed the information into the hospital system. This was a few years ago (2013) - I wonder if things have changed?
My hospital uses "My Chart", excellent for my regular blood tests with results available within 24 hours shown along with older results and normal range. Also has sections for other test results, letters, treatments, medications and more - all show only partial information and much out of date. GP uses "Patient Access", only useful for repeat medication requests.
Couldn’t agree more! Its good that there is rapid progress with digitisation of health records but the risk is a sort of ‘wild west’ of well meaning initiatives without a strategy. In fact the NHS England digital strategy is pretty good but runs the risk of being caught up in comms strategy discussions, ministerial nervousness etc etc such that other private provider initiatives overtake the strategy.
And then there is the UK wide question; what happens when I fall ill on holiday in Scotland and they can’t even access my summary health record to see what medication I am on!
The NHS despite an army of managers still doesn't use digital to its best advantage. I bet many hospitals still run on win 95. Keep highlighting it Rory. Some surgeries have awful BT landline broadband and aren't allowed to change to an altnet to get enough bandwidth to video call elderly patients. There are all sorts of things that plain common sense could sort.
My excellent service from the Ocular Melanoma department at Royal Hallamshire also takes on the responsibility of my six-monthly liver scan, as my surgery didn’t seem to want the expense
Whether you can see correspondence from hospitals etc is entirely the choice of your practice. Some practices allow it, others do not. Equally, the choice of how many appointment slots are released for online use is made by your practice. The tech's fine - the issue here is how the practice uses it
Patients under NHS Scotland health boards would be grateful for any sort of dashboard. There was a commitment in 2014 but not much progress since
“ The pandemic has accelerated the digitalisation of the health service”
Well…..only insofar as we have covid details on an app. Prior to the pandemic I could book an appointment with my GP via the NHS app. My surgery used the pandemic as an opportunity to remove that option so they could gatekeep more ferociously and everything became telephone calls, unless the receptionist deemed it urgent. Feels like things have gone backwards.
Personal Health Record using a Health Diary
Why should anyone need to keep a Personal Health Record? Because nobody else will do it for you.
There are several apps which give access to a someone’s medical history held in their GP records, and you can always apply to get a copy of your hospital medical records.
However, there is not a unified medical records system in the UK. Hospitals do not share records with each other, and an individual hospital does not share their medical records with the patient’s GP.
GP records only include what has been entered into them by the practice, and not every practice is that diligent at entering all data. Access to hospital medical records is not easy, you have to apply in writing, you get a paper record and there may be a charge. If you are treated at more than one hospital, it means several request need to be made. And then thousands of hospital records are lost every year.
Medicine is not the same as Health, even though they are often used synonymously. Medicine is part of Health, but not the whole.
Health is a much wider concept. We all have health related events where records may be kept but which are not and could not be entered into our electronic medical records, even if a unified electronic medical record were available.
For example:
Domiciliary care visits for the elderly or housebound. What agency provides the service, who are the people involved, when do they visit, what do they do?
Dental treatment, people change dentist frequently but a record of treatment never follows them. Dental abscess can lead to ill health so people should keep a record of dental problems as well.
Private online video consultations, becoming increasingly popular but not recorded.
Stress counselling provided through work as part of a wellness package.
Private physiotherapy, osteopathy, and sports medicine, perhaps provided through a sports club or gym
Alternative medicine, holistic or naturopathic treatment
Cosmetic operations, fillers etc.
Covid - have you had symptoms, how long did they last, have you had a test? (In the UK a GP is not informed if someone has had a test) etc.
And then there is mental health. In general anxiety and depression do not suddenly appear, they start gradually, but by the time someone needs help, the origins can often be lost in the acute moment. Having a long term record can help therapists understand people’s problems and let them seek a solution together.
None of the current systems, either provided by the state or commercial companies, covers the full range of an individual’s long term health history.
Given the wide diversity of situations, a health diary is the ideal way to keep track of events.
The Health Diary
A place where where people record any health event or mood, regardless of whether professional advice is needed or not, and which forms the basis for a lifelong record.
It functions like any electronic diary, though with templates to make recording different events easier and more consistent.
Not only is it a record of all health related contacts, it can help in other ways, to spot early signs of disease, provide a record for chronic illness and assess progress post operatively.
This should be at the core of the Personal Health Record and the starting page for any system.
Dear Rory, thank you for excellent article. Two small bits of good news for you:
1. You can see your Care Information Exchange data inside the NHS App if you live in one of these 11 NHS regions: https://manual.patientsknowbest.com/patient/nhsapp#h.lt3tt0b6wq3n
2. My Planned Care functionality looks like it will be part of the NHS App if I read correctly
I see some of your commentators are asking for a “how we got here” story. If you would like any background from me:
https://patientsknowbest.com/mohammads-story/
You are welcome to email me on mohammad@patientsknowbest.com.
Best wishes
Mohammad
You've touched a nerve Rory.
The pandemic has thrown a very harsh spotlight on the lack of joined up information systems and systems thinking throughout the NHS; thankfully things are beginning to move now to try to consolidate, not only those systems the various hospitals, clinics, surgeries & "ologies", but most importantly what the patient can see (letters, results, appointments etc.) to manage their own healthcare and how they can gain access to the information in one place.
Also in the mix is the healthcare information used by Local Authorities in the provision of Social Care as unsurprisingly, the majority of Social Care clients will also be in receipt of complimentary NHS services.
Personally I share your frustrations in dealing with multiple organisations and disciplines all of whom have taken a different approach to what a patients should (in their view) have access to and how it might be made available. I have access to PatientView, now being replaced by Patients Know Best by some Trusts, but frustratingly, not by all; as well as SystmOne, the NHS app and, soon another known as MyDCR which is the patient portal for the Dorset Care Record (DCR).
The DCR is an external application linked to the NHS Trusts in Dorset as well as the two local authorities and is intended to fill the gap left by difficulty in sharing patient / client information between the NHS & Adult Social Care. The Wessex Care Record, formally the Hampshire Care Record, is similar in function and there are many others dotted around the country. These applications are better than nothing but in reality, they are all costly, stop-gap, temporary applications that have only come about by the strategic failure of the NHS to grasp the nettle of secured, patient information sharing over many years.
On the brighter side, I understand the NHS is developing their main patient application (the NHS app) and taking input from CCGs and other bodies to define its strategy more clearly. One of those aspects is the scope of its remit in terms of its organisational (trusts, surgeries etc) inputs with a view to consolidating them into a single patient view.
That said and given the complexity of our legacy healthcare systems and the plethora of stop-gap local measures that have been developed & deployed over many years, I'm not hugely hopeful this information birds nest will become untangled anytime soon.
I'm an optimist by the way, in case you wondered :-)
It's an absolute car crash. It's easy to underestimate the scale of the challenge, but it's hard to figure out how this could be a bigger mess. Seems like everyone is having the same experience and I'd assume, if they're commenting here, they're technically literate enough to have a chance of navigating these systems. That's only going to be a small % of the overall audience.
Aside from the potential health dangers of heavily siloed information, the opportunity for bad actors is enormous. I had a discussion with one of the providers who were asking me to register to organise a hospital appointment with no obvious link to the hospital involved. I had to email the hospital and check their Annual Report to figure out there was actually a relationship between the two organisations. Your data in there (many, many) hands! 😱
Rory, I would love to see one of your well-researched "how we got here" explainers. There must be many influential people in your twitter followership who could be interviewed. My dim understanding is that the NHS National Programme for IT (NPfIT) from 2003 onwards was ambitious along these lines, but the procurement was botched and only fragmented delivery achieved. Apocryphal stories include it having lower procurement priority than plasters and dressings (because the yearly spend was lower, taking little account of the higher complexity). The hangover seems to me to be no appetite for a big programme that holds it together and instead these fragmented and localised systems.
You have touched a nerve with your reference to a lack of joined up digital information. I shall never forget sitting in an A&E whilst waiting for my Father in Law to be admitted one Saturday evening by the wonderful team at Nottingham Queen's Medical Centre. An ambulance paramedic arrived to hand over a patient, opened his lap top and started dictating the records to a senior nurse who typed the information into the hospital system. This was a few years ago (2013) - I wonder if things have changed?
My hospital uses "My Chart", excellent for my regular blood tests with results available within 24 hours shown along with older results and normal range. Also has sections for other test results, letters, treatments, medications and more - all show only partial information and much out of date. GP uses "Patient Access", only useful for repeat medication requests.
You didn’t mention econsult which I have found very useful. I don’t think all surgeries use it.
When computerisation first came in, GPs and hospitals used different codes and, as far as I know, this has never been sorted out.
GPs can get test results through a system called ICE which is also used for requesting tests. It usually works well.
Couldn’t agree more! Its good that there is rapid progress with digitisation of health records but the risk is a sort of ‘wild west’ of well meaning initiatives without a strategy. In fact the NHS England digital strategy is pretty good but runs the risk of being caught up in comms strategy discussions, ministerial nervousness etc etc such that other private provider initiatives overtake the strategy.
And then there is the UK wide question; what happens when I fall ill on holiday in Scotland and they can’t even access my summary health record to see what medication I am on!
The NHS despite an army of managers still doesn't use digital to its best advantage. I bet many hospitals still run on win 95. Keep highlighting it Rory. Some surgeries have awful BT landline broadband and aren't allowed to change to an altnet to get enough bandwidth to video call elderly patients. There are all sorts of things that plain common sense could sort.
Similar experience here.
Systems aren’t integrated.
My excellent service from the Ocular Melanoma department at Royal Hallamshire also takes on the responsibility of my six-monthly liver scan, as my surgery didn’t seem to want the expense