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
Company replied
While we don't verify specific claims because reviewers' opinions are their own, we may label reviews as "Verified" when we can confirm a business interaction took place. Read more
To protect platform integrity, every review on our platform—verified or not—is screened by our 24/7 automated software. This technology is designed to identify and remove content that breaches our guidelines, including reviews that are not based on a genuine experience. We recognise we may not catch everything, and you can flag anything you think we may have missed. Read more
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
638 reviews
No recent history of asking for reviews
This company hasn't invited customers recently, so reviews may not be representative
Replied to 50% of negative reviews
Typically replies within 2 weeks
How this company uses Trustpilot
See how their reviews and ratings are sourced, scored, and moderated.
Awful people
Awful people, who keep sending me emails about a change in my records, there has been no change I don’t want to be part of patients know best, if I know best then delete my account please and stop sending pointless emails
23 October 2024
Unprompted review
I do not want this
I do not want this, I don't recall ever signing up for it, I can't find any way to leave and keep getting emails and it's linked me to sussex hospital via my nhs account. I don't live in Sussex.
It means I can't link to my local provider, every time I follow the link sent to me by my local provider, it takes me to sussex hospital.....
14 October 2024
Unprompted review
Reply from Patients Know Best
I’m sorry to hear about your experience, Caz.
The welcome message displays the provider that first created your PKB record. Rest assured, this does not prevent other teams from connecting with you. Anytime one of your healthcare providers uses PKB, you’ll be automatically connected to their team via your NHS number. To see which teams you are currently connected with, please go to the 'sharing' section of your record.
If you’d like assistance, please don’t hesitate to reach out at help@patientsknowbest.com—we’re here to help!
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Technical help.
I had a technical problem updating and saving my personal details as I had changed my email account and forgot my login details. Stuart Chappell, a
Support Agent, was fabulous! Not only did he help me solve the problem but the instructions he supplied were detailed and clear - a rare event these days! First rate help and service. Thank you Stuart.
9 October 2024
Unprompted review
Reply from Patients Know Best
Thank you for sharing your positive experience! 🌟 I'm delighted to hear that you can access your PKB record again thanks to Stuart's first rate assistance! I'll be sure to pass along your kind words.
If you ever need further support, we're here to help!
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Absolute waste of time and public…
Absolute waste of time and public money. Another unnecessary system that adds zero value.
7 October 2024
Unprompted review
Reply from Patients Know Best
Hi Charles,
We’re sorry to hear that you feel this way. Our goal is to provide a useful platform that gives patients easy access to their health information, bringing together data from hospitals, GP records, and other providers in one secure place. We believe this added visibility can empower patients and support more informed healthcare decisions.
Thank you for sharing your thoughts. If there’s specific feedback on how we can improve, or if you would like any technical support, please contact our team using the email below.
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Fabulous platform that provides autonomy!
Fabulous platform that finally allows patients autonomy over their results, scans etc which offers more options, more knowledge capability, etc - a really worthwhile tool. Great customer service too!
7 October 2024
Unprompted review
Reply from Patients Know Best
Thank you so much for the 5 stars, Julia! 🌟 We're thrilled to hear that PKB has helped you feel more empowered and in control of your health information. And we're glad our support team could be there for you, too! 😊
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Check with your health centre whether you need them
I have been invited "to access 'my' medical information to help 'me' manage 'my' health.
I already can access it via the website of the local medical centre, so what do I need this lot for?
The wording of the ‘invitation’ email says:
“For more information on Patients Know Best please visit ourwebsite.”
However, all clicking the link does is send you to (in my case) my local health authority. I really despise this type of ‘false link’. Why not send us genuinely to the company’s website, tell us, upfront, who they are and that they are ‘appointed’ by the relevant health authorities to offer us a way of accessing our medical records (seemingly via their software). What’s wrong with that Messrs Al-Ubaydli?
From my check on Companies House today, this company is classed as
‘62012 - Business and domestic software development’.
If you really want to know about the company, check Companies House.
By the way: If ‘Patients Know Best’ why do we need doctors and hospitals?
When it came to deciding which pills to take my mother thought that she ‘knew best’ – She didn’t, and I’m sure it shortened her life.
7 October 2024
Unprompted review
Reply from Patients Know Best
Thank you for sharing your thoughts, Charles.
The invitation to view your health record, sent by your NHS Trust, contains a link to their webpages with more details on this service, to reassure you that PKB is an NHS-approved digital platform.
While GP record systems offer some access to primary care information, PKB combines data from hospitals (test results, letters, appointments), social care providers, and even data you add yourself, supporting coordinated care across all your healthcare teams.
Our name isn’t just a statement—it’s a mission. We believe everyone benefits when patients are knowledgeable about their health and have access to their data. Our goal is to empower patients with the information they need to make informed choices alongside their healthcare teams, supporting a collaborative approach that combines medical expertise with the patient’s own insights.
PKB is a software platform and an innovative social enterprise, recognised as a B Corporation. Our role is to support the NHS and other healthcare providers by offering patients a secure way to view and share their health information.
Thank you again for sharing your perspective—it helps us keep making PKB better for everyone. Please reach our to our support team if you need anything - we're here to help! 😊
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Read the proper privacy policy
Not the fluffy nonsense about data encryption and security.
Not touching this with a bargepole.
7 October 2024
Unprompted review
Reply from Patients Know Best
Hi there,
Sorry to hear this. We'd really like to hear more to see how we can help. Please send your concerns to help@patientsknowbest.com, and our support team will be in touch soon!
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Inundated with emails about new information when there is never anything new
I get daily emails (sometimes more than one a day) from Patients Know Best saying that my profile has been updated. A link to see the change is included in the email. There is never a change in my profile. I don’t get anything useful like consultants’ letters or test results. I am not sure what is the point of this app.
5 October 2024
Unprompted review
Reply from Patients Know Best
Hi Virginia,
Thank you for getting in touch with Patients Know Best and I'm sorry for any confusion caused by the email notification you have received.
As your hospital has 'updated your profile', this is a change to your demographic information, such as name, address, ethnicity etc. The link in the email will take you to the Profile page as this is where your demographics are stored. Some of these updates can be quite minor, such as an extra line in your address.
Clinical updates such as appointments or test results will be indicated in the email received. This data is sent to your PKB record from your hospital team. Please get in touch with our support team on help@patientsknowbest.com and we'll be able to provide more information on the data types your hospital is currently sharing with patients, and what you can expect to see in the future.
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Technical difficulty
I had a technical problem in registering with Patients Know Best and contacted the support team for help. Their speedy response and advice enabled me to obtain the correct link to register for the service and everything is now working properly. Thank you Support Team!
3 October 2024
Unprompted review
Reply from Patients Know Best
Hi there, thank you so much for the 5 star review! It's great to hear that our support team were able to resolve your problem quickly.
Best regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Patient Knows Best, Patient Knows Nothing more like.
What is the point of yet another private sector and inevitably expensive IT project if there is literally no data at all in my account? If I log on to my NHS app, I can see letters, appointments, test results and my meds list already. It's basically a duplicate of that app...except without that data. What a farcical waste of taxpayers money. (Calderdale and Huddersfield, if you're asking).
3 October 2024
Unprompted review
Reply from Patients Know Best
Thank you for your feedback, Patrick. I understand your frustration regarding the current lack of data in your PKB account.
The NHS app provides access to your primary care record held by your GP, while Patients Know Best (PKB) works alongside other healthcare providers, such as Calderdale and Huddersfield NHS Foundation Trust, to offer patients additional access to their health records. Currently, your NHS Trust is using this service to provide demographic and allergy information. However, many other NHS organisations are sharing test results, care plans, and making full use of the online record to share information with their patients.
The good news is that Calderdale and Huddersfield NHS Foundation Trust also plan to share more records in the future, including test results, appointments, and radiology reports.
For updates, you can visit their website: https://www.cht.nhs.uk/patients-visitors/patient-portal/patients-know-best.
If you need any support with your record, please contact us at help@patientsknowbest.com.
"You don't know me, but can I see all your medical records?"
I got an email from this bunch out of the blue. My initial reaction was: scam or phishing email. A little research they probably are genuine but I don't really trust my most personal details with a 'business' - which is what they are - who operate in this way.
I spend a lot of time telling my family not to respond to cold calling emails and such and here we have that very practice being normalised! I'm surprised the NHS and/or UK Government approve.
One of the advantages, they say, is care providers all over the world can access my data. Does this include China? Russia? North Korea?
Thank you, but I don't think I'll be signing up until I get better reassurances. Data breaches are far too common these days.
Edit after reading the reply:
The invitation was not, as far as I could tell from the email, from my NHS trust. If it was, it would be from an nhs.uk domain, not a .com domain registered by a Canadian company. I think it would be sensible if these emails were sent from an NHS account. It can't be that difficult to do.
3 October 2024
Unprompted review
Reply from Patients Know Best
Hi Adam, thank you for sharing your concerns. We completely understand your hesitation regarding unsolicited emails, and we apologise for any confusion caused by the invitation you received from your NHS Trust.
It's important to us that patients feel secure about their data. We encourage you to visit your NHS Trust's PKB webpages, which should provide you with more information on how your trust uses PKB and the benefits it offers.
Rest assured, only individuals with the appropriate permissions—such as yourself, your healthcare providers, and any carers you choose to invite—will have access to your health information.
If you have further questions or need additional reassurance, please don’t hesitate to reach out to our Support team at help@patientsknowbest.com.
Initially confusing but well worth the effort!
The process was a bit confusing to begin with, but once the software was installed it has worked well ever since. It is extremely useful being able to monitor one's own levels and perhaps begin to bring them within normal range where possible.
27 September 2024
Unprompted review
Reply from Patients Know Best
Thank you for the fantastic 5-star review, Barry! Glad to have you with us as we expand our reach, helping more patients access their health information. If you have any questions or additional feedback, please don't hesitate to reach out. We're always here to help! 😊
Kind regards,
I get e-mails but I am unable to login…
I get e-mails but I am unable to login and see anything information.
I keep getting sent links but support appear to not believe I am having problems. Now I see everyone is.
I ask if I could stop getting the e-mails and have now found I I need to say, I wish to de-register my record.
This is not easy to get any help.
4 September 2024
Unprompted review
Reply from Patients Know Best
Hi Don, I'm sorry to hear about the difficulties you've experienced.
I can see that Peaches has been handling your query and explained that the profile update emails you're receiving are related to changes in your demographic information (e.g., address). These notifications are limited to once per day, but if you prefer, you can disable them by adjusting your notification preferences in your Profile.
I can also see that Peaches has assisted with your request to deregister.
If you'd like further support, please get in touch with our support team.
Its a joke, but we have no other choice.
A 15 year old product site. And its crap! And unbelievably frustrating at every use.
Terrible on a small screen, annoying on a normal screen.
Most UK Kidney patients were forced to migrate to PKB when PV folded, (what a condescending name).
For over 2 years we have been asking for 2 simple improvements.
A table data view to see all results, and an export function.
2 simple changes. Just sort it out.
Any comments or enquiries just get directed to the 'manual that isn't a manual' , or a 'Im sorry we take your comments seriously'
The last time I actually got through to arrange to talk to someone they arranged a vid chat with a different time zone!
REAL integration into something like Apple Health would be a bonus. Cmon. 15 years! I can't think of any other platform that doesn't make real improvements, and listen to its 'customers'
19 September 2024
Unprompted review
Reply from Patients Know Best
Thank you for your feedback. We're sorry to hear about your experience, and we understand your concerns.
Regarding font size, you can adjust it using Chrome’s accessibility features.
As for the test results display, we made changes based on extensive patient feedback. The updates included a ‘Latest test results’ table view, which was a highly requested feature, especially from renal patients.
Unfortunately, Apple Health doesn’t integrate directly with web platforms like PKB. However, we'd be very interested in supporting this integration in the future, should it become possible. Meanwhile, you can sync Apple Health data to PKB via the OMRON Connect app.
We appreciate your input as we continue to improve, and you can follow our latest updates on the PKB blog.
Zero stars. Waste of time
Have registered for this a few yearsxago & hoped with time it would improve but its still an Absolute waste of time. No information about test results etc. Just appt letters.
16 September 2024
Unprompted review
Reply from Patients Know Best
Hi there. It must be very disappointing to only see your appointment information in your record, we completely understand your frustration. Our mission is for every person to have access to their health record and to use this information to manage their health and care. The clinical data is shared by your health care organisation(s). Many organisations are using our platform to share test results, care plans and much more with patients, others are taking a more phased approach. Please can you get in touch with our support team so that we can help you? Once we know which healthcare organisation you are under the care of, we can advise on the data types they are currently sharing, and what they are planning to share next. The email that you need is help@patientsknowbest.com
Zero is to high for this
Only gave 1 because no zero. Rubbish,goes round and round in circles. Tried to accept my appointment but couldn't and couldn't find help anywhere. This is the 3rd time in about 3 months, back to letter.
16 September 2024
Unprompted review
Reply from Patients Know Best
Hi Peter, we are sorry to hear that you have had trouble accepting your appointment within your record.
Some healthcare organisations offer appointment messaging via your Patients Know Best record, this allows you to send secure messages to the appointments team, to accept, reschedule or cancel. If your organisation are not currently offering this service, then the options to amend the appointment won't appear.
If you take a look in the events and messages section of your PKB record, you may have an appointment letter with contact details. Otherwise, our support team will be happy to help you find the contact information so please do get in touch via help@patientsknowbest.com
Best wishes,
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.
The Trustpilot Experience
Anyone can write a Trustpilot review. People who write reviews have ownership to edit or delete them at any time, and they’ll be displayed as long as an account is active.
We use dedicated people and clever technology to safeguard our platform. Find out how we combat fake reviews.
Learn about Trustpilot’s review process.
Here are 8 tips for writing great reviews.
Verification can help ensure real people are writing the reviews you read on Trustpilot.
Offering incentives for reviews or asking for them selectively can bias the TrustScore, which goes against our guidelines.