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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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.
Cowley Road, CB4 0WS, Cambridge, United Kingdom
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Replied to 54% of negative reviews
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Absolutely terrible. Difficult to access, difficult to navigate, no information of any value.

Reply from Patients Know Best
I worked with medical students who were learning how to use Patients Know Best and I was surprised by how effective it was. I didn't think that communicating by email would be at all satisfactory compared to face to face meetings. However there were some unexpected benefits. In setting out my written discussions with the medical students I developed a clearer understanding of exactly what was causing me problems and I was able to identify issues which were easily solvable. Also I thought there would be no development of empathy in communication by email was this was not a barrier to an empathetic approach from the students. I found their advice very helpful.

Reply from Patients Know Best
Involved in the conference Rewire.
An outstanding team - knowledgeable,supportive and caring to patients.
I use this helpful app to deal with renal failure diagnosed 6 months ago.
I can easily access and track my blood results within 24 hours of being taken which helps me maintain control of my condition.

Reply from Patients Know Best
Very poor. Tried using on my phone(as it’s an app) and can hardly read it. I have excellent eyesight. Spent ages going into each folder (why so many!?) and found nothing. Waste of time!!! Why do we need the nhs app and this app?!!

Reply from Patients Know Best
Doesn't show all my test results. Claims that local hospital doesn't release them. Therefore not much use.

Reply from Patients Know Best
This site is terrible. I keep receiving messages saying I have messages on PKB. The only time recently that there was indeed a message there for me I found it was a questionnaire on Covid approximately 3 years out of date! I think my most recent several messages have simply been reminders to complete it and (before those) a message saying it had been withdrawn! My husband has similar issues. If we had a choice we wouldn’t go near this site.

Reply from Patients Know Best
Patients know Best is a great platform for all of your health related information to be in one place.
It helps manage your appointments by having access to them at any time, see test results, assessments and care plans so I no longer need to worry about that bit of paper I got at my hospital appointment with instructions on how to help when you aren’t feeling your best.
I can add my own stuff in too, I can upload documents and add other appointments.
Not only that but I can share my information with other people, so if my husband or family need to see my results or care plan it’s easy to share with them knowing my information will always be safe and secure, I can choose who I share with and can take away sharing rights at any time if I change my mind. I can share things with my doctor or hospital consultant if they don’t have access to them on their system too.
I really like being able to see all of my information from different hospitals and doctors all in one place.
I can see a library of things my care teams want to share with me, like a hospital map for my appointment or a leaflet and video that is about my care, it’s really useful knowing the things in there are about my conditions and are right for me so I don’t have to use Google and potentially get it wrong.

Reply from Patients Know Best
Love my PKB record! I get my appointment letters in PKB so quick because hate getting paper letters through the post. That has to be saving the trust money too? It was also easy to register using my NHS app login. A happy Helen.

Reply from Patients Know Best
Thank you for providing such a unique solution which has enabled me to gain access to my elderly mothers blood results (and mine) and support her journey to better health. It’s also great how I can access PKB from the NHSApp!!
I have to say some of these reviews highlight people’s lack of understanding and ill judged speculation of your mission. It’s very clear to me that you provide the software not the data in it, in the same way Bill Gates provides outlook but doesn’t control the emails you receive or administer the system. I don't see people complaining to Microsoft if the hospital doesn’t email them!
I have also read the patient and clinician stories on your website site, wonderful. You should share them here in your responses to the doubters.
I think our hospital plans on sending in more soon. All good from us!

Reply from Patients Know Best
Although relatively new to PKB I’m finding the service immensely helpful. I frequently need fast access to various test results and PKB enables me to do just this. Reading notes after surgery is reassuring and a useful tool for reminding one of physio exercises. Very beneficial.

Reply from Patients Know Best
I have had a PKB record for some time.
It’s always been fascinating to review my blood results - especially as they always become available to me more quickly than if I sought to get them from my GP. I have a benchmark for my bloods, I understand when something isn’t right, which has helped when I have had any episodes of being unwell.
I had a health scare last year and was able to show my blood results to clinicians in England and vice versa (letters/discharge summaries) in Wales when I returned home. All my follow up clinic letters (including letters shared from English trusts with my doctors in Wales) are available . These document my planned care and treatment and allow me to self manage and have reduced time spent chasing information from different places. This was particularly helpful at a time when I had received care in 3 different hospitals. As the patient, I was able to share my health information with doctors who otherwise would not have had access to reports and scan results.
I’m not sure what I’d do without my PKB record. Thank you ☺️

Reply from Patients Know Best
I had the opportunity to work with medical students and uterlise the PKB electronic system for contacting the medical students, with challenges that were affecting my health and wellbeing. The purpose of was to ascertain the effectiveness of communicating confidential health issues, for a group of medical students to discuss as a team and make suggestions to assist my health. I was sceptical regarding such a system. As previously I had spoken to medical students face to face. However, using the PKB system I found I was able to consolidate my key anxieties and symptoms. I was also able to do this at a time that suited me best. Sometimes very early mornings. The students responded with strategies and directions to medical professionals, suggesting the words to use and helping me to prioritise my concerns and symptoms.
PKB proved to be an effective system for enabling a patient to receive timely advice and feel listened to and be confident that progress, was being made , re diagnosis and subsequent treatment by appropriate healthcare personnel.

Reply from Patients Know Best
It is a terrible app. Why do some GP Hospitals use it. Basically asks patients to fill in blanks. Only provides blood test results nothing else I use the app at my hospital for information

Reply from Patients Know Best
Keep stalling and fobbing me off with promises of deleting my account despite asking them to do so several times over 3 weeks

Reply from Patients Know Best
Instead of deleting the account as requested, they fob you off by replying and promising that the account will be deleted IF I want it deleted. Of course I want it deleting hence the reason for contacting you to delete it.

Reply from Patients Know Best
So helpful to receive my blood test results digitally via Patients Know Best. I like having the results to hand when I speak to my GP, I feel informed which leads to a much more productive conversation. Also thrilled to hear this service is being extended to document delivery too, so much more efficient to have everything in one place in digital format and no more lost letters in the post! Thank you!

Reply from Patients Know Best
This organisation keeps spamming me with invites to create an account. The spam emails give the impression they are part of the NHS, they are NOT.
There is no "unsubscribe" link in the emails and I did not give them permission to contact me.
My NHS Trust has obviously passed on my email address to this organisation.
DO NOT BE FOOLED INTO CREATING AN ACCOUNT WITH THESE SCAMMERS, the NHS App does it all.
**UPDATE TO REPLY**
Same generic response as all the other responses.
You did not answer my concerns, ie
*why you have my email address
*why can't I unsubscribe from your spamming emails
*Confirm all the info you provide is already available via the NHS App
So, I ask again - How do I unsubscribe and have my email (and any other personal data) removed that you hold about me without my permission?
:(

Reply from Patients Know Best
Had a letter sent to me within 'Patients Know Best'. it took a lot of trial and error and frustration finding the right link to click on to get this letter. Then the font was too small. I am short-sighted so I managed to print the letter but could not read it. There was no way of increasing the font on the letter before printing it. I could enlarge it on the lap-top screen but not on the pdf. I rang the hospital, no body knew what I was talking about. I rang my GP and they didn't know anything about it. Absolutely dreadful.

Reply from Patients Know Best
As a patient who has had recent appointments at Medway Hospital and Maidstone hospital, using patients know best is great for appointments . After a recent trip to A&E at medway I was surprised my discharge notes were on patients know best before I got home . Hopefully I will see more of my own data in the future

Reply from Patients Know Best
Thin end of wedge.

Reply from Patients Know Best
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