Everyone so often I get a notification from the NHS App and an email saying I have a new message on Patient Knows Best. I follow the links and most times all it says: [NHS Provider] Updated Inf... See more
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Review summary
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Reviews shaping this summary
Fantastic service and collaboration from the PKB team. The app is fantastic, and we chose to partner with them for many reasons, mainly because they are leading the way in the achievement of single pa... See more
Company replied
My first attempt to register my wife and I ended in failure as I had been trying to use a single email address for us both. I spent several hours trying to cancel and re-enter the system. I decided... See more
I was having difficulty registering for PKB. I emailed, and was talked through - via email - what to do. Eventually my wife took over as nothing was working out, daily emails for over a week, until ev... See more
Company replied
Company details
Information provided by various external sources
Patients Know Best (PKB) is Europe’s largest personal health record platform, enabling patients and healthcare professionals to access real-time health information - anytime, anywhere. As the world’s first patient-controlled personal health records system, PKB facilitates borderless, integrated care wherever the patient needs it. That means any healthcare provider, whether in another area of the country or another part of the world, can immediately access all the information they need to support improved clinical decision making and the best patient care. Everything from test results, care plans, real-time monitoring data and discharge summaries, to the patient’s own data - either uploaded from their journal, wearable devices or using symptom tracking, are all available in one patient record. This also reduces the need for professionals to request background information from the patient’s regular healthcare team. In 2020, PKB became the first personal health record (PHR) to integrate with England’s national health platform - the NHS App. This extends the NHS App’s current features and sharing of GP data, to allow patients to access PKB’s full health and care record and functionality, direct from the national NHS interface. For more information on the features and benefits of Patients Know Best, visit www.patientsknowbest.com or email enquiries@patientsknowbest.com.
Contact info
Cowley Road, CB4 0WS, Cambridge, United Kingdom
- help@patientsknowbest.com
- www.patientsknowbest.com
3.2
Average
631 reviews
No recent history of asking for reviews
This company hasn't invited customers recently, so reviews may not be representative
Replied to 54% of negative reviews
Typically replies within 2 weeks
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Patients Know Best? Give us a voice then….
Every time I enquire about the PKB site, why this or that function does not work, I am told it has nothing to do with PKB, that’s it’s all the Trust’s fault for not enabling whatever function they need to enable. Then, they send a follow-up email saying they hope my query was answered and how did they do. If nothing is ever PKB’s fault but the fault of whatever trust a patient belongs to, would it not be a good idea for PKB to talk to the trusts? If the point of having PKB is just a messaging service then why have all these functions that lead nowhere? Why pretend? From the off, just say you’re just a message service, not a health one so that way, we all know where we stand. Ironically, for a site called Patients Know Best, it’s very good at keeping us in the dark!
August 8, 2024
Unprompted review
Brilliant platform, the best I have seen
I have been extremely impressed with Patients Know Best. As someone with complex health issues, clear information that is easy to access is really important. This is something I have from the hospitals that use Patients Know Best through their platform. I also have care at some other hospitals and their information to patients is much less comprehensive and much harder to access. It's about time the whole NHS used PKB so that people can have control of their own health. It will improve their lives and save the NHS a fortune in unnecessary appointments
August 1, 2024
Unprompted review
Reply from Patients Know Best
Thank you so much for the 5-star review 🌟 Your feedback about the benefits of clear, accessible information is exactly why we do what we do.
Thanks for sharing your experience and for your support!
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Very prompt resolution to my question
Very prompt resolution to my question
August 6, 2024
Unprompted review
Reply from Patients Know Best
Thank you for the review, Andrew! 🌟 If you ever need further assistance with your PKB record, we're here to help.
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Really exciting to see that my PET/CT…
PET/CT scan results will be published on my NHS/PKB app after 5 weeks. Patients should have unembargoed access to their health data and test results including scans as soon as available and not after their appointment with the consultant. The patient is the only one who actually understands and has the lived experience of what it is like to live with their condition. We need to be active in our health care and not passive recipients. I am hoping the NHS will review this and allow PKB to post results as they become available.
August 5, 2024
Unprompted review
Reply from Patients Know Best
Thank you for the 5-star review, Bobbie 🌟 We appreciate your advocacy and are committed to empowering patients with timely access to their health data. If you ever need assistance, we're here to help.
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Inaccurate information
I often get emails to advise that a new message is on PKB with a link but when I enTer the site I cannot find any messages. Your website also states that NHS app will go to PKB without extra sign in but I always have to sign in to both. I am a regular patient and the only thing I get from PKB is appointment detail which I get via the hospital by post anyway. None of my medical records are visible except the ones I put on myself.i assume my medical group don't enter dara.
August 7, 2024
Unprompted review
Reply from Patients Know Best
Thanks for your feedback, Elaine. We tell you which section of your record has been updated within the email. For example:
- updated your profile: (link to profile page)
- added test results: (link to your test page)
Profile updates are changes in your demographic information (e.g., address). The notifications are limited to once per day, or you can disable them by adjusting your notification preferences here if you wish: https://wiki.patientsknowbest.com/space/MAN/3624665101/Email+notifications#How-can-I-change-my-email-notification-preferences.
Frequent changes suggest an address conflict might be causing updates to overwrite each other. Please contact your NHS Trust(s) to ensure they have the correct information on file.
Please get in touch via help@patientsknowbest.com, our support team will advise on how your NHS Trust is using PKB and what you can expect from your record.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Pointless
I don't see the point of Patients Know Best (which they clearly don't but that's another matter). The only info on it is what the system asked me about myself & my condition when I created my account. None of my regular test results appear on it, I can't book appointments thru it, I can't renew presciptions thru it.
August 6, 2024
Unprompted review
Reply from Patients Know Best
Sorry to hear this, Tim. If you’re not seeing appointments, test results, or other medical information, this suggests your NHS Trust(s) may not yet be connected to your record, or they are taking a phased approach to releasing data to patients. Please get in touch via help@patientsknowbest.com, our support team will take a closer look for you.
Our name reflects our mission—to help patients gain the knowledge they need to be fully informed and actively involved in their care.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
I find the srevice first class and very…
I find the srevice first class and very usefull as it keeps myself and wife up to dates with all our many appoitments.
I highly recomend them.
July 4, 2024
Unprompted review
Reply from Patients Know Best
Thank you for your kind words, Malcolm! 😊 We're thrilled to hear that our service has helped you both to manage your appointments. If you ever have any questions or need assistance, we're here to help!
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
I gave up on Patients Know Best
I tried to contact Maidstone Trust by Internet to cancel appt. Found it impossible to do this. Very frustrating and time wasting. I gave up
July 30, 2024
Unprompted review
Reply from Patients Know Best
Hi Bill,
I'm sorry to hear about your frustrating experience.
PKB appointment management is available via the NHS App for Maidstone and many other participating NHS Trusts. This feature allows you to securely message the appointments team to reschedule or cancel your appointment.
We have a step-by-step guide here: https://wiki.patientsknowbest.com/space/MAN/3624075361/NHS+App+%26+NHS+Login#Accessing-PKB-appointments
I hope this helps, but if you continue to have trouble, please don't hesitate to contact us at help@patientsknowbest.com.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Must be about the worst user experience…
Must be about the worst user experience I've had in years. I occasionally receive notifications that something has happened on my account and to click the link......which just goes to my profile page, no more info on what's been changed, nothing new in notifications...what a waste of space.
August 2, 2024
Unprompted review
Reply from Patients Know Best
Sorry to hear this, Graham. We send email notifications about record updates, detailing type of change—such as 'added test results' or 'updated your profile'.
Profile updates are changes in your demographic information (e.g., address), not clinical data. These emails are limited to once per day, even if multiple updates are made. You can disable them by adjusting your notification preferences here if you wish: https://wiki.patientsknowbest.com/space/MAN/3624665101/Email+notifications#How-can-I-change-my-email-notification-preferences.
If profile changes are occurring frequently, it suggests an address conflict between your NHS Trusts, causing updates to overwrite each other. Please contact your hospitals to ensure they have the correct information on file. If you need further help, feel free to reach out to our support team.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Absolutely appalling.
Absolutely appalling.
Given up trying to order repeat prescriptions as the website says it will send a log in code by sms. By the time the sms arrives the link has timed out. Also when you try to log in to the site, you get a warning stating that the site is not secure and you cannot access it.
Total waste of time the NHS portal worked perfectly no need for this adfitional layer of no doubt very costly admin.
August 1, 2024
Unprompted review
Reply from Patients Know Best
Sorry to hear this, Alan.
There seems to be some confusion here as PKB doesn't send SMS login codes. You may be referring to NHS login. You can log into PKB using your registered email and PKB password. Access via your NHS login account is optional, and any issues with their process should be directed to NHS login's support team.
Regarding the security warning, PKB is fully secure. Our login page will display a warning if you are using an outdated browser or cookies are disabled. However this wouldn't prevent you from logging in or compromise security. Is it possible you've confused us with another software?
Please reach out to us at 📧: help@patientsknowbest.com, and we'd be happy to help.
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Misleading and Inaccurate
Most test and scan results are missing. I have diagnoses, but these are not mentioned. If practitioners are relying on information here this could result in no or inappropriate treatment. This is another example of wasted NHS resources and should be shut down without further delay.
July 26, 2024
Unprompted review
Reply from Patients Know Best
Dear Geraldine,
Thanks for reaching out. We completely understand your frustration. At PKB, we wish for every patient to access a personal health record that is complete, real-time, and accurate.
With our platform, healthcare providers can share data with patients directly from their hospital record system. Whilst some have made all data types available to their patients, others are taking a more phased approach.
Your healthcare providers decide what data is shared with you and when. Rest assured that the moment new information is available in your record, we notify you by email.
We'd really like to help further. Please contact our support team at 📧 help@patientsknowbest.com. We'll advise on your NHS trust's plans for data sharing, and/or put you in touch with the local PKB admin team at your hospital.
We appreciate your feedback and are here to help. Thank you for your patience and understanding.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Do not use
Would highly recommend patients not to use this platform.
My name is incorrect and so was my address - completely different to my systm1/GP record.
I've missed a very important appointment and been discharged due to this error!
I noticed my name and address were incorrect when logging in to the app and tried to contact using the details but the number doesn't work.
On finding out I have been discharged I logged in again and there's no record of the appointment on there so I've no idea of it's purpose...
Not even sure how I can opt out!
July 25, 2024
Unprompted review
Reply from Patients Know Best
Hi Jen,
Thank you for your feedback. We're sorry to hear about your experience and want to support you in resolving this issue.
Personal data such as your name and address is fed directly into your PKB record from your healthcare provider's system. Your demographic profile is continuously kept up to date based on the data held in your hospital record. If there's a discrepancy, it's important to contact your hospital to correct their records. This will ensure that the correct information is accurately reflected in PKB.
At PKB, we wish for every patient to have access to a personal health record that is complete, real-time, and accurate. Without visibility of your data, mistakes in your hospital record can go unnoticed. We aim to provide transparency and empower you to take control of your health.
Please reach out to our support team at 📧: help@patientsknowbest.com. We understand how frustrating this is, but we are here to support you in addressing this with your hospital and ensuring your record is up to date.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Saving and printing pdfs
I have received emails from pkb , some with enclosed pdfs; These have been impossible to save or print.
Right-click-save-as does not work - it doesn't give me the option.
I pointed this out days ago. The problem remains.
July 17, 2024
Unprompted review
Reply from Patients Know Best
Hi Xavier,
Sorry to hear about your difficulties. We provided guidance via your support ticket on July 17th, detailing how to download the files without opening them, and included a screenshot for reference.
PKB displays attachments inline with options to open full screen or download. If viewing isn't possible, a download link will be available. For more information, please see our user manual. https://wiki.patientsknowbest.com/space/MAN/3625091092/Attachments
If you're still having trouble, please do get in touch with our support team, and we'd be happy to assist you further.
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Trying to registerwith PKB via email
Trying to registerwith PKB via email. But you never send the link.
July 18, 2024
Unprompted review
Reply from Patients Know Best
Hi Alison,
I'm sorry to hear that you've had trouble registering. If you are based in England, you can use NHS login to register on our registration page: https://patientsknowbest.com/register/.
If you are unable to use this, please feel free to email our Support team at help@patientsknowbest.com, and they will be delighted to help get you registered.
Needed to check if genuine site & email.
Received an email from this site with no idea whether it was genuine or fake. I had to google the site to check it out. Yes, it looks genuine, but I consider this very poor practice to receive something out of the blue when there are so many scams around. It's a waste of time for a start but even when I looked to see if genuine I looked at the Trust pilot reviews & it seems it's to do with hospitals, not GP, so is almost useless overall. I might register but don't know if it's worth the time. I suppose I was sent the email as I was recently referred to a service and will be on a waiting list, but I should have had official notice first so I knew it was genuine.
19/7/24 Thanks for the reply. Yes, there was a link, but I don't click on links from an unknown source! Thanks anyway.
July 15, 2024
Unprompted review
Reply from Patients Know Best
Hi Fran, we are sorry for any confusion that's been caused by the email invitation that you have received from your NHS trust. We certainly don't want to cause any worry to patients.
We do expect NHS Trusts to communicate with their patients about the service before mass registrations take place, however it seems like your invitation was triggered by your recent hospital activity. Please visit your NHS Trust's PKB webpages (the link may have been provided within your invitation) as this should provide you with reassurance about how your hospital are using PKB and how this can benefit you. Alternatively please feel free to email our Support team at help@patientsknowbest.com
I was sent an e:Mail stating your…
I was sent an e:Mail stating your record has been updated, when I looked into it the last record was from 8th April 2024 and not recent. Who sent the e:Mail was not known and I do not know how I can find out who did. Had a very quick reply back from the people who look after the software and of cause they could not help
July 6, 2024
Unprompted review
Reply from Patients Know Best
Dear Peter,
Thank you for your review. I'm glad to hear you received a prompt reply from our support team, but sorry the issue remains unresolved.
When your record is updated, the email notification you receive from PKB should include the source and the nature of the update, for example:
"XYZ NHS Trust has updated your record: updated your profile"
"XYZ NHS Trust has updated your record: added test results"
Clinical updates are referenced in the email i.e appointment, document, test result. I suspect your email states "updated your profile," which refers to your demographic profile. These updates can sometimes be very minor, such as an extra line in your address. If you are receiving these updates frequently, there might be a discrepancy in the data held by your hospital(s) and GP. Our support team will follow up with you and help get to the bottom of this.
Apologies for the inconvenience caused, we appreciate your patience.
Take care and best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Really quick response to my query…
Really quick response to my query ensuing in my being able to access PKB system.
July 15, 2024
Unprompted review
Reply from Patients Know Best
Thank you for your positive feedback, Judy! 🌟 We're thrilled to hear that you you now have access to your record. If you ever need further assistance, please don't hesitate to reach out.
Unintelligable - Worse than no Information
Been getting text and emails saying that 'my record has been updated' but when I access the system the information presented is unintelligible, absolutely meaningless to the patient - in fact it is worse than no information at all because it hints that there are results but they are not going to tell you what they are.
The system is a disgrace - the fact that anyone thought that reporting critical information to patients in such a manner was acceptable is absolutely disgusting.
Disgraceful service, they should hang their heads in shame.
July 11, 2024
Unprompted review
Reply from Patients Know Best
Hi Nigel,
Thank you for sharing your concerns. We're very sorry to hear about your experience and any confusion caused by the email notification.
When your hospital updates your record, you will receive an email detailing the changes, such as new appointments or documents. Recent changes will also appear in the notifications panel on your homepage.
If your hospital has "updated your profile," this refers to changes in your demographic information (e.g., name, address). The email link will direct you to the settings page where these details are stored. Some of these updates may be minor.
If you’d like us to address your issues further, please reach out to us at help@patientsknowbest.com.
Treated like I was the only one
Treated like I was the only one, 10 star treatment, couldn't have been better, Masters of Knowledge, Angels abound.
July 7, 2024
Unprompted review
Reply from Patients Know Best
Thank you for your positive feedback, George! 🌟 If you ever need further assistance, please don't hesitate to reach out.
It is useful to be able to go in and…
It is useful to be able to go in and check my blood test results. But not all my clinics in different hospitals use this particular portal. And even in hospitals that do use it, not all departments use it to share results the heart scans. Plus I keep getting messages that something has chzz as need in my record but when I log in, it isn’t at all clear what. So I have to check everywhere to see if I can spot a change. In all, should make life a lot easier but is so variable it doesn’t.
PKB's response was simple to confirm that I will get notified if ANYTHING however minor changes, but not what - and ignored totally my suggestion of how this could be improved.
July 4, 2024
Unprompted review
Reply from Patients Know Best
Sorry to hear this Rachel. We want every patient to access a copy of their health record, and we understand how disappointing it must be to not have access to everything.
Unfortunately, at the moment it is not possible to get your entire health record within PKB. We are working with many healthcare providers to give you access to your medical records however not all of them currently use PKB and not all wish to provide patients with all their medical records.
The good news is that we are ever-expanding and more NHS trusts are coming on board all the time, so please do keep an eye on our blog for the latest updates.
With regards to your updates, you'll receive email notifications whenever your hospital updates your record, indicating changes like new appointments or documents. Recent changes will also appear in the notifications panel on your homepage.
If your hospital have 'updated your profile, this refers to demographic information (e.g., name, address). The email link will direct you to the profile page where these details are stored. Some of these updates can be quite minor.
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