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
Created with AI, based on recent reviews
What people talk about most
Reviews shaping this summary
I get emails that are saying your records has been updated but please read any paper letters you get. I then find that an appointment has been cancelled ( with no notification). I get a new appointm... 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
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
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
636 reviews
No recent history of asking for reviews
This company hasn't invited customers recently, so reviews may not be representative
Replied to 51% of negative reviews
Typically replies within 2 weeks
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Reply from Patients Know Best
Thank you for the 5 star review! I'm glad the team could help you access your PKB record.
Please feel free to reach out if you need further support - we're here to help!
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Great idea but needs an overhaul.
This site is handy to see your medical appointments and test results, eventually, but little else is accessible. And it's annoying that it usually takes 4 to 6 weeks for results to show, even though I know that, for example, my PSA blood test result taken today, will be available to my oncologist early next week.
In PKB, I've just received a phone message saying my medical records have been updated, so I thought, great, today's result. But no, it just says this result will be available at 10.09am on the 13th September.
Software needs overhauling so we can see our results in real time.
Gary Chapman.
16 August 2024
Unprompted review
The service should state the date the…
The service should state the date the latest NHS communication was received or the date on the NHS letter / communication. Without this it is very hard to know what has arrived especially as recently the service has had issues sending out alerts which have already been received sometime more than one once!
15 August 2024
Unprompted review
Reply from Patients Know Best
Thank you for your feedback, and I’m sorry to hear about your concerns.
On your PKB homepage, there is a notifications panel containing a list of the latest clinical updates in your PKB record, the date listed is when the data was added to your record. To see the date of the event, such as the test or appointment, you can click through to view the details. This ensures you have a full timeline of your care.
Please note that if you receive an email notification regarding an update to your "profile", this change relates to demographic changes on your profile page only. Profile updates are not listed in the notification panel.
We’re sorry for any confusion caused and really appreciate your feedback as it helps us improve the experience for all users. Please also accept my apologies for the delay in responding. If you have further questions or need help navigating your record, please email us at help@patientsknowbest.com.
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Insecure site
Every time i try to get onto pkb after getting an email saying there is a new message,the account refuses access saying this site is insecure and may be under attack from hackers and so i cannot read any new appointments or updates.
14 August 2024
Unprompted review
Reply from Patients Know Best
Thank you for sharing your feedback, and sorry for the concern.
I’d like to reassure you that PKB is a secure platform used by many NHS organisations, and we take data security very seriously. The error message you’re seeing could be due to a browser issue or outdated settings on your device, rather than the platform itself.
Please email us at help@patientsknowbest.com, and our team will work with you to resolve this issue.
Thank you for raising this and for your patience, I’m sorry it’s taken us this long to get back to you. We value your feedback, and I’d like to address your concerns.
Lisa
📧: help@patientsknowbest.com
Patients Know Best
The messages I get are not very easily…
The messages I get are not very easily accessible, and some of the information is complicated to find were the message is , and they then tell you that you will get a follow up letter which comes 2 days past the appointment , absolutely no good at all .
8 August 2024
Unprompted review
Reply from Patients Know Best
Sorry to hear about your experience, Michael.
PKB is designed to make managing your health information easier, so it’s disappointing to hear that hasn’t been the case for you.
If you’re having trouble finding messages or accessing information, please email us at help@patientsknowbest.com, we’d be happy to guide you through the platform and look into the issue for you.
We really value your feedback, and I hope we can help improve your experience. I'm very sorry that we didn't see this message sooner and hope you can forgive the late response.
Lisa
📧: help@patientsknowbest.com
Patients Know Best
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!
8 August 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
1 August 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
6 August 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.
5 August 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.
7 August 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.
6 August 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.
4 July 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
30 July 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.
2 August 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.
1 August 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.
26 July 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!
25 July 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.
17 July 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.
18 July 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.
15 July 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
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