How we use your information
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Welcome to Patients Know Best (PKB)
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● 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
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● 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.
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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.
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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.
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: https://manual.patientsknowbest.com/patient/sharing#h.p_sGdbVe_KdzdG
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For all UK Organisations, PKB has a Data Processing Contract (DPC) that sets out the responsibilities for of each party. PKB is a Processor for all data that forms the PKB Record.
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● 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 assist the patient to access care services
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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/
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● PKB Information Governance Wiki: https://igwiki.patientsknowbest.com/homespace/IG
Please Note: If you registered with PKB prior to 2nd February 2022, please see the previous Privacy Notice related to your registration and consent.
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