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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
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● “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:
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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.
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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.
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● We use the notifications and messaging service provided by the NHS Transformation Directorate 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 Transformation Directorate.
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:
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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.
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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.
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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: https://manual.patientsknowbest.com/patient/sharing#h.p_sGdbVe_KdzdG
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)
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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 Contract
For a breakdown of all organisations using PKB, please see this map
PKB's responsibilities in the DPC as a Processor are:
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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 http://patientsknowbest.com/contact-us.
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