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
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Review summary
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What people talk about most
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
3.3
Average
642 reviews
No recent history of asking for reviews
This company hasn't invited customers recently, so reviews may not be representative
Replied to 48% of negative reviews
Typically replies within 2 weeks
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Utter confusion. Received email saying records updated
Received email saying records updated. Clicked on the link and eventually found details of appointment that had already been cancelled! The appointment was for 12.15 yesterday, at 01.00 today it is still not showing as cancelled! I find it very difficult to find messages, I click on the link in the email but it always takes me to the profile page, not the message!
13 September 2024
Unprompted review
Reply from Patients Know Best
Hi Patricia,
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.
Please contact our Support team on help@patientsknowbest.com so they can help get to the bottom of it.
How can you trust them?
This business has access to a large part of your patient record & where you are being treated. Apart from an enquiry form on their website they are not contactable. Replies to those forms can take days & they don't answer questions or offer meaningful help, only refer you to their online help which is out of date or incomplete. Their contractibility is less than Amazon! Many hospitals will add you to their database without your express consent so beware. Other are switching to DrDoctor, a similar service, that works through the NHS App & not, as with PatientKnowsBest through their own portable that also requires another third party App for security. If your hospital or GP service uses this service decline to co-operate as any service that is afraid of a telephone call is not worth you time or trust.
6 September 2024
Unprompted review
Reply from Patients Know Best
Thank you for your feedback. I understand that our agent, Tarra, has already spoken with you to address some of your concerns, but I’d like to clarify a few points further.
Patients Know Best does not have access to your patient records. We are simply the data processors, meaning we provide the platform through which your healthcare provider shares information with you. The healthcare provider remains the data controller, and only you and your clinical team have access to your medical information. All data within your record is securely encrypted.
If you do not wish to share your records with certain healthcare providers, you can easily manage your sharing preferences within your account under the "Sharing" section.
We would like to apologise for any delays in our response to you and for any inconvenience you experienced. For further questions or assistance, please feel free to contact Tarra directly to ensure a quicker response.
Thank you again for sharing your thoughts. We are constantly working to improve our service and support, and your feedback is invaluable.
Can't bulk export results to CSV or Excel
Appalling system where you can't bulk download you results to CSV or Excel; you have to print each test separately! Every time I register this with their support I'm told its been passed onto development but mothing happens. This basic feature was available in PatientView so a huge step backwards.
29 August 2024
Unprompted review
Reply from Patients Know Best
Hi Simon, Thank you for sharing your feedback.
We are continually working to improve our system, and while this functionality is not yet available, we hope to offer it in the future. In the meantime, we recommend subscribing to our blog, where we post updates about new features and improvements.
I HAVE RESOLVED THE PROBLEM I HAD AND I…
I HAVE RESOLVED THE PROBLEM I HAD AND I CAN NOW GET ONTO IT. THANK YOU VERY MUCH. IT WAS FOR MY HUSBAND TO GET ONTO PATIENTS KNOW BEST. I WAS SORTING IT OUT FOR HIM.
16 August 2024
Unprompted review
Reply from Patients Know Best
Hi Gloria, Thank you for letting us know! We're so glad to hear that the issue has been resolved and that you were able to get your husband onto Patients Know Best successfully. If you need any further assistance in the future, please don’t hesitate to reach out.
Reply from Patients Know Best
Hi Steve,
It looks like our agent, Peaches, has been in touch with you and provided a contact number to help resolve your login issue. If you did not receive her email, please check your junk folder. Alternatively, feel free to reach out to us again at help@patientsknowbest.com, and we’ll be happy to assist further.
Unclear which issue …
I don’t think that I’ve had a response to my question below about which issue we are referring to. Please advise.
15 August 2024
Unprompted review
Reply from Patients Know Best
Hi Mr K Mace,
Thank you for your message. We apologise if we haven’t responded to your question yet. Could you kindly clarify which issue you're referring to so we can assist you more effectively? Please feel free to reach out to us directly at help@patientsknowbest.com, and we’ll make sure to address your concern promptly.
Absolutely hopeless
Absolutely hopeless trying to use this site. Told I have an urgent message pre surgery cannot get on any which ways. Impossible. I have used the site before yet still have to provide phot id and face picture. They have made it so difficult to use it is pointless. been trying for an hour to access it. The links in the mail dont work..they would have taken me there direct. Had to change password and now they want my passport or driving licence…well done nhs you are complicating it so much it is keeping the patients you want to reach out. Thought bank was bad this is so much worse so I will not receive my urgent message pre surgery…thanks a lot.
23 August 2024
Unprompted review
Reply from Patients Know Best
Hi David,
Sorry to hear about the difficulties you’re experiencing. It sounds like there might be some confusion between Patients Know Best (PKB) and NHS login. NHS login does require identification from patients during registration, but once you’ve registered with NHS login, you can use it to access your PKB record. However, you don’t need NHS login to access your PKB account. You can simply log in using your registered email and PKB password.
Access via NHS login is optional, and any issues with their process should be directed to NHS login’s support team.
If you're still having trouble logging into your PKB record, please feel free to reach out to us at help@patientsknowbest.com, and we’ll be happy to assist you further.
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
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