Privacy Notice

How we use your information

Welcome to Patients Know Best (PKB)

This page explains how and why we use your personal information, what your rights are and how you can exercise your rights in relation to this use of your personal information.

We provide this information so that you can decide whether or not to create your PKB Account, through which you can share your information with the professionals who provide your care and make some decisions about how they share your personal information.

To learn how to use your Account, the user manual is at: https://manual.patientsknowbest.com/

1. The terms we use

  • “You” This means you, the user and the person controlling who can see or share their record

  • “Patients Know Best (PKB) Account” is the online account that shows you your personal health information shared by your care providers and gives you some control over who can see it, including what you may choose to add about yourself

  • “Patients Know Best (PKB) Record” is the information about you provided by your care providers and is shared between themselves to provide you with safe care before you create your PKB Account

  • “Patient Contributed Data” means the information you add to your PKB Account and choose to make visible to professionals providing your care and anyone else you choose

  • “Provider Contributed Data” means the information professionals have recorded and shared between themselves through the PKB Record and with you in your PKB Account

  • “The Service” is the IT platform and software PKB use to provide your online PKB Account and PKB Record

  • “Carers” are friends, family or anyone you choose to give access to your PKB Account

  • “Professionals” are the people working for organisations who have been given access to PKB Records because they help to deliver your care. These people have had their identity and qualifications verified, for example, doctors and nurses, and have been trained in handling confidential patient information

  • “Organisations” are customers of PKB that have information about you and that you can choose to trust to see your records, for example, hospitals or GPs

  • “Encryption” is a method of securing your information so that only those with the correct credentials can access it

2. Types of PKB Service Users

As well as patients, the PKB Service can be used by three other types of users:

  1. Carers

  2. Professionals

  3. Organisations


Information on these roles is found in the PKB manual: https://manual.patientsknowbest.com/

3. Purpose of PKB

We aim to bring you your health records from anywhere, and for you to control who sees these records.

In your PKB Account your information is divided into four areas:

  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 creating your PKB Account, you can decide who can see what, e.g. you may want your doctor to see everything but your family to only see your general health. You can also ask others to decide on your behalf, e.g. your doctor can share with other doctors for you. If an Organisation has information about you, the Organisation can send that information via PKB to you, e.g. automatically sending discharge letters to your PKB Account.

The PKB Service will search other databases to show you information that may be relevant to you. You decide how to make use of this information, e.g. if we tell you about a clinical trial, you decide whether or not to take part. Your information is not shared with anyone until you decide.

4. Information disclosure and further use

We do not use or disclose your information to anyone except as described in this Privacy Notice.

If you send us a request for help (details below) you are likely to tell us your name and email address. We will only use this information to provide the help you have requested.

PKB may further use your information:

  • To provide you with important information about the Service, such as updates and notifications (e.g. changes in this privacy notice)

  • To send you the PKB email newsletter (if you have chosen to receive it)

  • To identify your age and location to help determine whether you meet the criteria for a PKB Account

PKB may contract companies to provide services on our behalf, such as our support desk or to answer queries about the Service. We give those organisations access only to the minimum personal information to help you with your queries, such as your IP address (your computer’s location) or e-mail address. They are bound by a contract and a duty of confidentiality. These companies cannot access your health information, which is encrypted.


NHS services

  • 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 provide 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” and we must act under the instructions provided by NHS Digital (as the “controller”) when verifying your identity. This restriction does not apply to the personal information you provide to PKB separately. See the privacy notice and terms and conditions for NHS login managed by NHS Digital.

  • We use the notifications service provided by NHS Digital for sending you information. To do this we will only send a minimal amount of information necessary. Further information about the service can be found in the privacy notice for the NHS App managed by NHS Digital.


5. Confidentiality

PKB fulfils its duty of confidentiality through clauses in employment contracts, corporate policies covering confidentiality and security, providing ongoing training to all employees and requiring the same of any company we contract to support us.

Please ensure when providing information about other people, for example, including Personal Data about a family member, that you have permission to do so.


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

This is a complex area of data protection law. In general, to comply with the legal obligations of Professionals and Organisations in maintaining accurate health records, the following occurs:

  • PKB does not delete PKB Records unless an Organisation asks, normally 8 years after it was last accessed by the Organisation

  • Where an Organisation ceases the contract with PKB, unregistered PKB Records that have not been accessed by an Organisation will be deleted within 30 days of contract cessation

  • Where an Organisation ceases the contract with PKB, registered PKB Records will be retained or deleted at the discretion of the Organisation. Where PKB Records are retained, a retention-only contract will be established.

  • PKB does not delete your PKB Account unless you ask, and then we can only delete information that you have added that has not been viewed by a Professional

We explain in more detail below:

PKB Accounts

Once you create a PKB Account, you are in control of who can access your record and what they can see. The law may override your wishes, e.g. a court order stipulates access by another individual or authority, or in other very rare exceptional circumstances.

You can edit or hide information you have added until it has been viewed by a health or social care professional. After a Professional has viewed information in your PKB Account it may be retained by the Organisation. In most cases, this retention period will typically be 8 years as outlined in the Records Management Code of Practice.

You cannot edit or hide information others have added. If you would like to change or hide information that has been added by an Organisation about you, for example, if it is incorrect, you must contact that Organisation to request this. All of your PKB health data is held securely and is encrypted in storage and in transit.

Children’s records

The only exception to the above function is for children’s records. Professionals have control to ensure the safety of the child’s care. Full control of your record is possible from 13 years old, except in special circumstances e.g. to protect your health.

PKB Records

Your PKB Record will only be deleted if the Organisations provide this instruction to PKB. This is because Professionals may make decisions about your care based on information in your PKB Record. This is a similar case to your doctor maintaining records about you for the future safety of your care.

Typically, adult health records are deleted 8 years after last access by the Organisation, but PKB will only delete your record once an Organisation asks us to. Where multiple Organisations contribute to your PKB Record, each Organisation will need to provide a deletion instruction for data where they are a controller of e.g. Organisation A cannot request deletion of data contributed by Organisation B.

An organisation may provide a deletion instruction to PKB at any point during their contract. After the Service contract has ceased an Organisation may request the PKB Record to be deleted or retained (in line with the Records Management Code of Practice) within PKB or in a different system. Where the Organisation provides a retention instruction to PKB after the Service contract has ceased, a retention only contract will be established.

Emergency care

In an emergency, Professionals may override the limitation you have put on access to your information. This is called ‘Break the Glass’. When they do this they must declare the reason they have for accessing your record. PKB records this action, and the Organisation reviews it. Break the Glass is only for emergencies when you may lack the capacity to consent (e.g if you are unconscious) and when (in the Professional's clinical judgement) it is in your vital interest that the Professional sees your record.

Your rights

You may ask your Organisation to ‘Disable Sharing’ if you do not wish to share your record with any Professional, and to prevent Professionals from being able to Break the Glass. You should think carefully before asking for this and review your decision periodically. With Disable Sharing, Professionals can only see the information about you they have added to your record, and no other data from any other party. More information on Disable Sharing is available here

7. How is my information protected?

PKB is committed to protecting your privacy.

We cannot see your health record and have no direct control over your information. We store all of your information on secure servers and encrypt all of your information. Our security measures are tested at least annually to standards set by the UK National Cyber Security Centre.

8. Lawful Basis


Organisation-contributed information (PKB Record)


To find out the legal bases for an Organisation that provided your information, you should check their privacy notice.


For all UK Organisations, PKB has a Data Processing Contract (DPC) that sets out the responsibilities for each party. PKB is a Processor for all data that forms the PKB Record. For NHS organisations a Joint Controller Relationship is established for any data you, as a patient (PKB Account), share with the Organisation.


You can see a copy of the template DPC below, although the specifics of the agreement may vary slightly from Organisation to Organisation:


NHS Data Processing Contract


For a breakdown of all organisations using PKB, please see this map


PKB's responsibilities in the DPC as a Processor are:


  • Providing the Service

  • Providing the security of the Service

  • Processing on the written instruction of the Controller


Organisations providing data are responsible for:


  • The quality of the information uploaded to PKB including ensuring the correct privacy labels are with the associated information

  • Providing access to those in the Organisation who require it


Patient-contributed information (PKB Account)


Once you create your PKB Account, PKB is the controller for the information you contribute and relies on the following legal bases:


  • Processing under legitimate interests. Processing occurs only after you have voluntarily registered and you have added information to your PKB Account. Your interests, rights and freedoms continue to be protected.

  • Processing that is necessary for the provision of care. PKB ensures patient information is available to providers, relatives and/or carers to support the delivery of care, as well as assisting the patient to access care services


For NHS Organisations using PKB, after you share data with them, a Joint Controller relationship will be formed for this data between PKB and the NHS Organisation – the NHS Organisation may retain this data as part of your healthcare record.


PKB Data Protection Officer (DPO)


PKB’s Data Protection Officer is David Stone.


You can write to our DPO: dpo@patientsknowbest.com


Patients Know Best Ltd Contact Routes


To contact PKB’s Support Team: https://www.patientsknowbest.com/contact-us


Further information about PKB is available via our website:

https://patientsknowbest.com/


UK ICO Registration and Complaints

PKB is registered with the Information Commissioner’s Office (ICO), which regulates data protection in the UK, and our registration number is Z2704931.


You can raise a complaint with the Regulator here: https://ico.org.uk/make-a-complaint/

9. 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 need further information please refer to The PKB Manual and the PKB Information Governance Wiki below or contact us through patientsknowbest.com/contact-us .


Please Note: If you registered with PKB prior to 2nd February 2022, please see the previous Privacy Notice related to your registration and consent.

Privacy Notice - Version 5.3 (UK) - Updated: [24.08.2022]