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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Reviews shaping this summary
The site is remarkably easy to use and the steps needed to achieve your goal are explained simply and accurately. I have been on many sites over the last few days and getting to where I want to go h... 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
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
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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
645 reviews
No recent history of asking for reviews
This company hasn't invited customers recently, so reviews may not be representative
Replied to 47% of negative reviews
Typically replies within 2 weeks
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PKB has really helped me manage my…
PKB has really helped me manage my mums’ care with her as her nominated carer. English is not her first language so being added as her carer in her PKB record, I am able to help her quickly. For example, if she receives any blood results I can see what these are as I will also receive an email notification. I can also view any discharge summaries quickly alongside any clinical letters without having to chase up the hospital or GP for this.
November 7, 2024
Reply from Patients Know Best
Thank you so much for your feedback! 😊 It’s wonderful to hear how PKB has helped support you with your mum’s care. Being able to access her information quickly must make such a difference.
We’re so glad PKB is making things easier for you both. It’s exactly why we do what we do. Thank you for sharing your experience! 💜
Lisa
📧: help@patientsknowbest.com
Patients Know Best
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Excellent
Very efficient Service, very helpful IT Team, got my system up and running very quickly and asked if there was anything else they could do to help.
October 29, 2024
Unprompted review
Reply from Patients Know Best
Thank you so much for the review, Gill! 🌟 If there's anything more we can assist you with, please don’t hesitate to reach out.
Warm regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Haven't signed up but really angry with…
Haven't signed up but really angry with my GP surgery for inviting me to sign up to this PRIVATE social enterprise. Trying to access test results/letters from GP but being redirected to this app.
November 5, 2024
Unprompted review
Reply from Patients Know Best
Thank you for your feedback, and I’m sorry to hear about your concerns.
Patients Know Best (PKB) is indeed a technology platform with a social purpose, and we’re proud to be a recognised B Corporation, meeting high standards of positive social and environmental performance.
NHS providers rely on partnerships with trusted software platforms to manage health records. The NHS App displays your GP health record, with data flowing from the system used by your GP practice. PKB provides a broader personal health record, including information from hospitals, GPs, mental health services, and data you enter yourself. You can access PKB directly or view parts of it within the NHS App for a seamless experience. Your clinical data is encrypted, and can only be accessed by you, and those authorised by you.
If you have questions about registering or need support, please feel free to reach out. We’re here to help!
Warm regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Empowered Care: A Game-Changer for patients
I cannot express enough how transformative the “Patients Know Best” platform was during my adult son’s recent hospital stay. Having real-time access to his blood results and written reports allowed me to process information effectively and truly understand his care. It created an environment where everyone worked together as a team, sharing responsibility for my son’s health.
At both Worthing and Bart’s hospitals, this system completely changed my experience. I no longer had to rely solely on doctors for updates, as I could check the information myself, alleviating some pressure from the medical team. This not only gave me a clear understanding of my son’s condition but also allowed me to witness when the medications finally started to work the positive changes in his blood results immediately, rather than waiting for the next day’s ward rounds.
Overall, “Patients Know Best” made a significant difference in our journey, keeping everyone on the same page and empowering me as a caregiver. I highly recommend this platform for any patient or family navigating their own or a loved one’s hospital care.
July 9, 2024
Unprompted review
Reply from Patients Know Best
Thank you so much for sharing your experience, Kerry 🌟 It’s wonderful PKB had such a valuable impact on your journey, helping you stay informed and connected during your son’s hospital stay. Stories like yours are why we’re here—to empower patients and carers with meaningful access to health information 💙
Warm regards,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Appalling !
Appalling !! as a renal patient the information given does not give the time the information is recorded patient access was a much better programne this is a waste of time
October 25, 2024
Unprompted review
Reply from Patients Know Best
I’m sorry to hear that you’re finding PKB difficult to use, Raymond.
Timestamps are available within your record, such as when a test was taken, and when test results were added. If you’re having trouble locating this information or if anything seems unclear, please reach out to us at help@patientsknowbest.com—we’d be happy to assist and help make PKB work better for you. Please also take a look through our user manual: https://wiki.patientsknowbest.com/space/MAN
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
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This bunch of chancers are costing us…
This bunch of chancers are costing us all huge amounts of money. I have a message waiting for me apparently, and the only way of accessing this is via their application/website. I have read their terms and conditions, investigated their ownership, and now I understand a little about their business model. I'm really unimpressed. I have no intention of giving any third party access to my data, encrypted or not. I would suggest you think long and hard before you do. The end result is that I have had to telephone the NHS trust this morning to find out what that communication might be. The NHS are not aware of anything - if this is a ruse by PKB to get patients to sign up then it's shameful - wasting not only my time, but the valuable time of the NHS. PKB is therefore introducing delay and confusion and for what benefit? They've inserted themselves uninvited into a relationship that is already hard enough to manage.
** In response to comments from PKB. This is all window dressing that doesn't address the concerns of most patients. Frankly, I am more concerned that clinicians read my notes when I see them, and they don't. They either don't have access, or if they do they don't have time. What I know about my records is of limited value to me. I'm not a prescribing qualified physician. This is an answer to the wrong question and I remain of the opinion, a waste of money. As for securely offering access - that's just very unlikely. There isn't an information system on the planet that's never been compromised. Do I believe that the original remit won't be changed over time to allow pharmaceutical companies access to patient data? No I don't. It's gold to them. Unless I have misread, they number amongst your funders. Your response also mentions that access via your systems is optional. Then put that prominently on your communications so that they sound a little less like a fair accompli.
October 25, 2024
Unprompted review
Reply from Patients Know Best
Thank you for sharing your concerns with us. I’m sorry to hear of your frustrations.
To clarify, we provide a secure software platform to help patients access and manage their own health data. The clinical and demographic information in your PKB record is a real time reflection of your hospital record, allowing you to have visibility over your data.
When healthcare providers update or add new information to your record, PKB sends an email to keep you informed. The email will indicate the type of change, such as a new test result or an updated appointment. If you receive a message about a “profile update,” this usually refers to changes in demographic details.
Registering with PKB is entirely optional. We’re here to give patients the choice to access their health data, putting them in control. The NHS relies on various software systems to manage data internally, many of which are not accessible to patients. PKB is designed to give patients more transparency and easier digital access to their own records.
If there’s anything we can do to help, please feel free to reach out to our support desk on help@patientsknowbest.com.
Best wishes,
Lisa
📧: help@patientsknowbest.com
Patients Know Best
Missed an appointment due to the influx…
Missed an appointment due to the influx of emails (9+) regarding notifications, letters, appointments, amendments, cancellations - i had (unknowingly) two back to back appointments the amount of emails confused the hell out of me with differing information - nothing was clear and so i missed an appointment both a waste of NHS and my time.
The user interface is to be honest absolute rubbish.
Online help is rubbish.
I do not trust this shambles of a company and will be trying to opt out.
September 2, 2024
Unprompted review
Reply from Patients Know Best
Thank you for sharing your experience—I'm so sorry to hear that you missed an appointment due to excessive emails.
We limit certain notifications by default to avoid overwhelming you with messages. For example, we'll send a maximum of one email per day regarding test results or demographic updates. However, for time-sensitive updates, like an upcoming appointment, there's no limit applied as we think it's important to keep you informed.
The flurry of notifications you received were due to changes made by your clinical team in their hospital system. These updates are immediately reflected in your PKB record, allowing you, the patient, to have visibility and control over your data.
Our support team would be happy to guide you in adjusting your notification settings or offer tips on using PKB. Just drop us an email at help@patientsknowbest.com—we’re here to help!
Lisa
📧: help@patientsknowbest.com
Patients Know Best
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
October 23, 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.....
October 14, 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
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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.
October 9, 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.
October 7, 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!
October 7, 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.
October 7, 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
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Read the proper privacy policy
Not the fluffy nonsense about data encryption and security.
Not touching this with a bargepole.
October 7, 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.
October 5, 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!
October 3, 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).
October 3, 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.
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"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.
October 3, 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.
September 27, 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.
September 4, 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.
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