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
2. Types of PKB Service Users
As well as patients, the PKB Service can be used by three other types of users:
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:
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:
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.
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:
We explain in more detail below:
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 becomes part of the PKB Record and will be retained by the Organisation. This retention period will vary across countries in Europe relative to national guidance. 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.
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.
If a Professional has viewed your PKB Record, it cannot be deleted. This is because Professionals may make decisions about your care based on information in your PKB Record. This is a similar case to if you had written a letter to your doctor – it is then a part of your doctor’s records about your care and cannot be easily removed. Typically, adult health records are deleted in line with national retention guidelines 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.
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.
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.
8. Lawful Basis
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 .
Privacy Notice - Version 5.2 (EU) - Updated: [21st March 2022]