In France, patient held records are the norm. Everything from blood results, x rays to scans. And most results are given to you after your appointment, or you wait until they are ready. Blood tests done at lab first thing, and emailed to you in the afternoon. It is the patient’s responsibility to take them to relevant appointments e.g. consultants. It does provide some storage challenges, for x rays in particular.
The cultural shift required by the medical profession includes writing letters directly to the patient. If the doctor writes directly to the patient there’s no excuse for not explaining what is going on and what the test results mean. Copying the letter that’s written to the GP to the patient is not the same thing. Phrases such as “I saw this pleasant lady in clinic today...” make me cringe!
Rory. I’ve in the last week used the NHS app very helpfully to get information. But I’ve had a look and can see none of the stuff you can. How can we go about getting it activated? Or does it just have to wait for my GP to get with it?
Patients have a legal right to access their records but the devil is in the detail of how to do this easily. Patients were granted online access to their summary records in 2015 but many medical professionals expressed concern about how patients would react and still felt very paternal in their approach.
There was a nation-wide push in 2016 to get more GP practices to provide online access to records, blood tests etc and a leading light in this field is Dr Amir Hannan a GP at Haughton Thornley Medical centre in Hyde, Tameside. Dr Hannan has provided full access to records to all his patients and has been proactively promoting this practice and doing training with staff, parents and any other practice he could help. Just to note in case you're not familiar with this part of the UK Hyde is a hugely deprived area and Dr Hannan took over the GP practice that Harold Shipman had and has made a huge success of it including having over 85% of his patients signed up to FULL access to their record online.
I have long term conditions and want to be as informed as I can so am keen to have as much access as I can. I have also been a non-executive in the NHS & understand the barriers people come up against.
I offered help to my local GP practice and did my best and had Dr Hannan's help but there is fear it will cause them more work when all the evidence shows it does the opposite. There are issues in interoperability between Primary, Community and Secondary Care as well as with private providers. Many hide behind 'oh we can't share patient data' but you can with the patient's permission if you ask them.
Since becoming ill and disabled in my forties I learned to keep my own basic narrative record of appointments etc as I soon realised I was the only one with the overall picture. I get copies of everything from referral letters(which are often very low on detail) to radiologist reports of scans/x-rays etc. When i see a new consultant or doctor I have a briefing ready for them if they would like it- some do, some don't.
I think I should be informed as a long term patient so I can do my best to manage my conditions and do wish some health professionals would stop this endless paternalism and understand patients are people too who have lives. With the technology we have now it should be really easy, there really is no excuse any more.
If you would like any more information on this issues happy to share more from my records of working to promote this and my own experience.
Long overdue message. As an elderly and disabled patient I have been extremely privileged to have been given a PKB account in 2017. A single place into which my different care settings can feed clinical reports and test results and to which in return I can upload important medical data from nonconnected care settings and any other relevant medical information. Self care, self management, patient activation, patient agency: yes! But this can only be achieved with PKB, and its integration with the NHS Login and the NHS App!
I'm not so sure about your 'So what..." comment. I know a few people who are not particularly health-savvy and who would be anxious about particular words or out of range results etc. I suppose that they don't have to look at their results, but I can see that health professionals may be concerned about a patient potentially seeing a serious health issue flagged up in advance of an appointment to discuss. I agree that knowing results in advance could enhance that discussion (it certainly would for me) but again, I'm not sure it's true for everyone.
But give people the choice. If people want stuff suppressed, then have a setting to allow stuff to be suppressed.
If people want everything on there for them to see, then have it on there for them to see.
The medical staff shouldn't be the ones to make that decision. It should be the patient.
Because of this (and other reasons), I have blocked all sharing (including of my PDS record) to prevent all medical staff seeing everything. The NHS really needs to sort out the issues of data sharing and consent. Its been going on decades, and they're still not getting it right - because they're not listening, and they don't want to give patients autonomy.
Would that it was so straightforward. Many patients won't have enough understanding of potential conditions or results and if they're curious enough, will look them up on the web which is one of several roads to hell. Many years ago I had a similar discussion with a health information provider and left feeling I was being patronised. Experience has since shown it's a better and simpler approach to include a delay where results are subject to review by a doctor. It helps ensure the correct messages reach the patient and minimises the risk of misinterpretation
Dear Rory this so resonates. as a multi hospital mixed up patient trying to be helpful not annoying. The NHS app is good for me in GP-land my hospital (s) haven’t signed up. But at least I know my bloods and urine YAY!
the idea that this is "patient held data" is a lie. It's patient data held by a private company. A private company owned by Al-Ubaydli. He owns your data.. and when you request it, he.. and his company may grant you access to the data held on you (or may not grant you that permission). quite a different proposition!
PKB seems wonderful and I’ve had a look at their very slick website. There’s loads of interesting and inviting stuff but I can’t find any information on where they get their income from. This must be considerable given how many staff they employ etc. I really want to trust them and register but this makes me cautious.
Can you shed any light on this Rory, as you’ve talked to the CEO?
Hi Speakingeye, in the UK we get paid by the provider (eg the NHS hospital) or the region (eg NHS North West London on behalf of all hospitals, GPs etc). In the Netherlands the central government pays and so on. Nowhere do we charge patients.
Thanks for responding so quickly and for your explanation.
My concern wasn’t that you might charge me or other patients. You make it very clear on your website that you don’t. It would be helpful if you made it equally explicit to potential users where your funding comes from. Sadly given the current political climate, ongoing NHS privatisation/outsourcing and revelations from the Covid Enquiry, I am wary of any organisation or individual that isn’t transparent about this.
I have been thinking this over and have a further question. Is PKB a not-for-profit organisation or do you have shareholders who receive dividend payments from your profits?
I am a passionate supporter of the NHS having spent my career as a clinician in their employ and as a service user and carer. I absolutely acknowledge the communication problems that you are seeking to address, but am also aware of the money being lost to the NHS by the outsourcing of all sorts of services to private ( profit making ) companies.
Hello again! We are a limited share company, i.e. ‘for profit’, but classified as a social enterprise which is pertinent to your concerns.
Our motivation is patient access to their data and the understanding to own their health. We recognise it’s a big mission with complex challenges to solve. As a private company I believe we can focus on the innovation required to do this. Since our founding 15 years ago we have invested all our income in our product. No shareholders have ever received dividends.
I live in north of Scotland. Last year I fell off a fence onto my back on concrete. When x-rayed they told me I had not done any damage but 5 months later I found out by accident that I had compression fractures of my vertebrae. When A & E got the report back from Radiology they did not share the information with either me or my GP. Absolutely astounding. The health service here is broken. The only way I can get any information is by trying to get an appointment with a GP and then asking them to print off my results or letter. No one else it seems has the authority to do this. When I recently asked for an appointment in mid October I was given an appointment on 4th December! There is absolutely no joined up thinking. If I ever get my blood pressure taken and I ask what it is - I am asked if it would mean anything to me if they told me. How condescending. I have lost all faith in our NHS.
Such an important tool. NHS and local government colleagues and I worked with the PKB team to try and get it up and running locally in the early 2010s as a pilot area and hit loads of bureaucratic hurdles. Glad to hear it's still developing and rolling out more widely.
In France, patient held records are the norm. Everything from blood results, x rays to scans. And most results are given to you after your appointment, or you wait until they are ready. Blood tests done at lab first thing, and emailed to you in the afternoon. It is the patient’s responsibility to take them to relevant appointments e.g. consultants. It does provide some storage challenges, for x rays in particular.
The cultural shift required by the medical profession includes writing letters directly to the patient. If the doctor writes directly to the patient there’s no excuse for not explaining what is going on and what the test results mean. Copying the letter that’s written to the GP to the patient is not the same thing. Phrases such as “I saw this pleasant lady in clinic today...” make me cringe!
Rory. I’ve in the last week used the NHS app very helpfully to get information. But I’ve had a look and can see none of the stuff you can. How can we go about getting it activated? Or does it just have to wait for my GP to get with it?
Patients have a legal right to access their records but the devil is in the detail of how to do this easily. Patients were granted online access to their summary records in 2015 but many medical professionals expressed concern about how patients would react and still felt very paternal in their approach.
There was a nation-wide push in 2016 to get more GP practices to provide online access to records, blood tests etc and a leading light in this field is Dr Amir Hannan a GP at Haughton Thornley Medical centre in Hyde, Tameside. Dr Hannan has provided full access to records to all his patients and has been proactively promoting this practice and doing training with staff, parents and any other practice he could help. Just to note in case you're not familiar with this part of the UK Hyde is a hugely deprived area and Dr Hannan took over the GP practice that Harold Shipman had and has made a huge success of it including having over 85% of his patients signed up to FULL access to their record online.
I have long term conditions and want to be as informed as I can so am keen to have as much access as I can. I have also been a non-executive in the NHS & understand the barriers people come up against.
I offered help to my local GP practice and did my best and had Dr Hannan's help but there is fear it will cause them more work when all the evidence shows it does the opposite. There are issues in interoperability between Primary, Community and Secondary Care as well as with private providers. Many hide behind 'oh we can't share patient data' but you can with the patient's permission if you ask them.
Since becoming ill and disabled in my forties I learned to keep my own basic narrative record of appointments etc as I soon realised I was the only one with the overall picture. I get copies of everything from referral letters(which are often very low on detail) to radiologist reports of scans/x-rays etc. When i see a new consultant or doctor I have a briefing ready for them if they would like it- some do, some don't.
I think I should be informed as a long term patient so I can do my best to manage my conditions and do wish some health professionals would stop this endless paternalism and understand patients are people too who have lives. With the technology we have now it should be really easy, there really is no excuse any more.
If you would like any more information on this issues happy to share more from my records of working to promote this and my own experience.
Long overdue message. As an elderly and disabled patient I have been extremely privileged to have been given a PKB account in 2017. A single place into which my different care settings can feed clinical reports and test results and to which in return I can upload important medical data from nonconnected care settings and any other relevant medical information. Self care, self management, patient activation, patient agency: yes! But this can only be achieved with PKB, and its integration with the NHS Login and the NHS App!
Patients should decide whether there's a blanket delay to test results or not. So what if something points to a bad diagnosis?
This is, yet again, an example of the paternalistic behaviour of medical staff, that causes distrust.
If a patient is aware before they meet the doctor, the meeting with the doctor will be more productive.
Yet another reason why I refuse to partake in shared records. No consent, if I'm not involved, then nor will the NHS be
I largely agree with you about NHS paternalism.
I'm not so sure about your 'So what..." comment. I know a few people who are not particularly health-savvy and who would be anxious about particular words or out of range results etc. I suppose that they don't have to look at their results, but I can see that health professionals may be concerned about a patient potentially seeing a serious health issue flagged up in advance of an appointment to discuss. I agree that knowing results in advance could enhance that discussion (it certainly would for me) but again, I'm not sure it's true for everyone.
But give people the choice. If people want stuff suppressed, then have a setting to allow stuff to be suppressed.
If people want everything on there for them to see, then have it on there for them to see.
The medical staff shouldn't be the ones to make that decision. It should be the patient.
Because of this (and other reasons), I have blocked all sharing (including of my PDS record) to prevent all medical staff seeing everything. The NHS really needs to sort out the issues of data sharing and consent. Its been going on decades, and they're still not getting it right - because they're not listening, and they don't want to give patients autonomy.
Would that it was so straightforward. Many patients won't have enough understanding of potential conditions or results and if they're curious enough, will look them up on the web which is one of several roads to hell. Many years ago I had a similar discussion with a health information provider and left feeling I was being patronised. Experience has since shown it's a better and simpler approach to include a delay where results are subject to review by a doctor. It helps ensure the correct messages reach the patient and minimises the risk of misinterpretation
Dear Rory this so resonates. as a multi hospital mixed up patient trying to be helpful not annoying. The NHS app is good for me in GP-land my hospital (s) haven’t signed up. But at least I know my bloods and urine YAY!
the idea that this is "patient held data" is a lie. It's patient data held by a private company. A private company owned by Al-Ubaydli. He owns your data.. and when you request it, he.. and his company may grant you access to the data held on you (or may not grant you that permission). quite a different proposition!
Thank you, Rory, this has inspired me to complete all the stages for using the NHS App and PKB.
PKB seems wonderful and I’ve had a look at their very slick website. There’s loads of interesting and inviting stuff but I can’t find any information on where they get their income from. This must be considerable given how many staff they employ etc. I really want to trust them and register but this makes me cautious.
Can you shed any light on this Rory, as you’ve talked to the CEO?
Hi Speakingeye, in the UK we get paid by the provider (eg the NHS hospital) or the region (eg NHS North West London on behalf of all hospitals, GPs etc). In the Netherlands the central government pays and so on. Nowhere do we charge patients.
Mohammad (CEO of PKB)
Thanks for responding so quickly and for your explanation.
My concern wasn’t that you might charge me or other patients. You make it very clear on your website that you don’t. It would be helpful if you made it equally explicit to potential users where your funding comes from. Sadly given the current political climate, ongoing NHS privatisation/outsourcing and revelations from the Covid Enquiry, I am wary of any organisation or individual that isn’t transparent about this.
That's a good point thank you, Speakingeye we'll figure out the best place to put this into
Hi again,
I have been thinking this over and have a further question. Is PKB a not-for-profit organisation or do you have shareholders who receive dividend payments from your profits?
I am a passionate supporter of the NHS having spent my career as a clinician in their employ and as a service user and carer. I absolutely acknowledge the communication problems that you are seeking to address, but am also aware of the money being lost to the NHS by the outsourcing of all sorts of services to private ( profit making ) companies.
Hello again! We are a limited share company, i.e. ‘for profit’, but classified as a social enterprise which is pertinent to your concerns.
Our motivation is patient access to their data and the understanding to own their health. We recognise it’s a big mission with complex challenges to solve. As a private company I believe we can focus on the innovation required to do this. Since our founding 15 years ago we have invested all our income in our product. No shareholders have ever received dividends.
In 2011 Ashoka recognised our work as a social enterprise. As passionate NHS supporters this is important to our employees and I hope underscores our good intent. If you would like to read more about us here https://www.ashoka.org/en-gb/fellow/mohammad-al-ubaydl or of course contact us on help@patientsknowbest.com
I live in north of Scotland. Last year I fell off a fence onto my back on concrete. When x-rayed they told me I had not done any damage but 5 months later I found out by accident that I had compression fractures of my vertebrae. When A & E got the report back from Radiology they did not share the information with either me or my GP. Absolutely astounding. The health service here is broken. The only way I can get any information is by trying to get an appointment with a GP and then asking them to print off my results or letter. No one else it seems has the authority to do this. When I recently asked for an appointment in mid October I was given an appointment on 4th December! There is absolutely no joined up thinking. If I ever get my blood pressure taken and I ask what it is - I am asked if it would mean anything to me if they told me. How condescending. I have lost all faith in our NHS.
Such an important tool. NHS and local government colleagues and I worked with the PKB team to try and get it up and running locally in the early 2010s as a pilot area and hit loads of bureaucratic hurdles. Glad to hear it's still developing and rolling out more widely.