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Privacy Policy

Welcome to your Patients Know Best (PKB) Account. This privacy notice tells you how your Personal Data is used. This is so you can decide whether or not to give your consent to PKB; to create your PKB Account and for the Service to use your personal data. The privacy notice is not a user guide so it does not tell you how to use the Service or Account.


"You" This means the user and the person giving their consent to see or share their record
"Patients Know Best (PKB) Account" is an online account that that lets you gather, edit, store, and share personal health information
"The Service" is the IT platform used to provide your online account
"Carers" are friends, family or other people that help you with your care
"Professionals" are employees of organisations using PKB whose identity and qualifications have been legally verified, for example, doctors and nurses
"Organisations" are customers of PKB that are involved in your care and that you trust to view your records, for example, hospitals
"Encryption" secures data in such a way that only those with the correct credentials can access it

Types of PKB Service Users

You can use PKB with three other types of users:

  1. Carers
  2. Professionals
  3. Organisations

Because Professionals have been legally verified they can do things on your behalf and in your interest. For example, they can legally confirm that:

  • you are an adult
  • and you can understand information about your health
  • you can be in control of your PKB account.

Please note that if you access our service using your NHS login details, the identity verification services are managed by NHS Digital. NHS Digital is the controller for any personal information you provided to NHS Digital to get an NHS login account and verify your identity, and uses that personal information solely for that single purpose. For this personal information, our role is a "processor" only and we must act under the instructions provided by NHS Digital (as the "controller") when verifying your identity. To see NHS Digital's Privacy Notice and Terms and Conditions, please click here. This restriction does not apply to the personal information you provide to us separately.

Purpose of PKB

Our aim is to bring you your health records from anywhere, and for you to control who sees these records.
Your record is divided into four parts:

  1. General health (e.g. diabetes)
  2. Sexual health (e.g. sexually transmitted infections)
  3. Mental health (e.g. depression)
  4. Social care information (e.g. day centres)

After registering with PKB you decide who can see what, e.g. you may want your doctor to see everything but your family to only see your general health. And you can also request that others decide on your behalf, e.g. your doctor can share with other doctors for you.

If an Organisation has data about you and the Organisation agrees to send the data to Patients Know Best, using Encryption, Patients Know Best will show you the data in your Account.

For example, Organisations can automatically send their discharge letters to your record. When you log in, PKB software will search external databases for you. None of your data is sent outside PKB for these searches.

Will my information be used for anything else?

Once you have provided consent to PKB and have decided who can see your record, PKB will use software to search databases to show you information. You decide how to make use of this information, e.g. if we tell you about a research trial, you can decide to take part. Your information is not shared until you have told us you want to share it.

Patients Know Best does not use your Account-holder information for marketing purposes without first asking for and receiving your opt-in. We do not use or disclose your information except as described in this Privacy Policy.

If you send us a help request to you are likely to tell us your name and email address.

Occasionally, although we ask you not to, Users may tell Patients Know Best clinical information about themselves (e.g. "I cannot access my message from Dr Smith" or "How do I get my haemoglobin test result from my daughter's cancer team").

Patients Know Best has no ability to access any clinical information in your health records.

Data disclosure and use

To help you with your query, Patients Know Best may use personal information:

  • To provide you with important information about the Service, such as important updates and notifications
  • To send you the Patients Know Best e-mail newsletter (if you choose to receive it)
  • To determine your age and location to help determine whether you meet the criteria for an Account.

Patients Know Best may hire other companies to provide services on our behalf, such as a support desk or to answer queries about the Service. We give those organisations access only to the minimum personal data to help you with your queries, such as your IP address or e-mail address.


Patients Know Best requires the companies to maintain the confidentiality of your personal data and prohibits them from using it for any other purpose. Patients Know Best does not share any health records with these third parties because we do not have access to such information.

Is PKB free?

For the patients, yes - there is no charge to patients, carers or individual professionals you invite to view your record. PKB is paid for by organisations such as your hospital, health board or local practice. PKB will continue to provide a service to you, the patient, even if our contract ends with the organisation you originally signed up with.

Can I delete or hide my PKB account if I change my mind?

Because Professionals make medical decisions based on the information in your PKB record, it is a health record. Data cannot be deleted for 8 years after last usage, in case there is a legal case about medical safety. You are in control of access to your record unless the law stipulates access by another individual or authority is required. Professionals accessing your record must declare the consent they have, this is recorded in PKB.

This allows professionals to access your record in an emergency, using PKB's Break the Glass functionality. Break The Glass allows a professional to see a your record without your consent. This is for emergency situations when you lack the capacity to consent (e.g the you are unconscious) and the professional's clinical judgement is that your safety requires the professional to see the record. More information on this functionality can be found here: .

You may enable a feature called Disable Sharing if you do not wish to share your record with any Professional, and this will also prevent professionals from being able to Break the Glass.

After Disable Sharing is enabled by an Organisation's Privacy Officer, Professionals will only be able to see data they have contributed to the record.

The one exception is children's records - Professionals have control to ensure the safety of the child's medical care. Full control of your record is possible from 11 years old barring special circumstances.

You can only edit or hide data you have added. You cannot edit or hide data others have added. If you would like to change or hide information that has been added about you, or if it is incorrect, you can contact the Organisation and request this.

How is my information protected?

Patients Know Best is committed to protecting your privacy.

PKB cannot see your health record and has no control over your record. We keep the information on secure servers. We encrypt the data so no one can see your health record except the people you choose or those with a lawful basis. We have registered with the Information Commissioner's Office ("ICO"), which regulates data protection in the UK, and our registration number is Z2704931.

Tracking, Cookies and Analytics

You can opt-in to receive the PKB newsletter which has updates about PKB. PKB tracks software usage to improve software quality. PKB does not track identifying information or records. PKB uses cookies to improve website operation and usage; for example, we use cookies to set a Users language and to monitor usage trends. Cookies do not contain identifying information such as IPs, health data or personal details.

This Privacy Notice

This privacy notice applies to the Patients Know Best Service (referred to in this privacy notice as the "Service"), which you access by logging into your account.

This privacy notice does not apply to any other online or offline Patients Know Best sites, products, or services.

The privacy notice is written generally as if you are the patient, i.e. you use your own Account to manage your health records. If you are a Carer who manages the patient's records for them, you must read the privacy notice on the basis that it refers to you using your Account to manage the patient's health records.

Agreement and Further Information

A User's continued use of the Service constitutes the User's agreement to this privacy notice . If you feel you require further information before you are able to provide consent - please refer to The User Information and Security Statement section below or contact

Read more about our privacy policy.

User agreement

Patients Know Best (PKB) provides software to help patients manage their own health information. PKB puts you, the patient, in control of all health information about you that is added to PKB. PKB enables you, the patient, to control who can use this information with you.

To start using your PKB account, a PKB customer (e.g. your hospital) will verify your identity. And you must agree to this Account Service Agreement.

You must be at least 16 years old or have approval from your parent or legal guardian. You can stop using the Patient Access Service at any time and you own the copy of the data in your record.

You must obey the law, choose a secure password, and notify PKB or our customer of any security problems. You are responsible for information you input into PKB.

If you find a problem with data within your PKB record from a PKB customer, e.g. your hospital doctor, please contact that clinical team. If you find a problem with data you entered into PKB, e.g. symptoms, messages and output from home devices, please contact PKB directly via

Questions related to data protection and privacy can be addressed to Patients Know Best at:

F.A.O. Data Protection Officer
Patients Know Best
St John's Innovation Centre, Cowley Road Milton, Cambridge CB4 0WS
Phone: +44 (0)1223 790708

If you have a complaint, please refer to Patients Know Best's complaints procedure page.

Read more about our user agreement.