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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
● “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:
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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.
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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 the NHS Transformation Directorate. The NHS Transformation Directorate is the controller for any personal information you provide to the NHS Transformation Directorate 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” for the NHS App managed by NHS Transformation Directorate and we must act under the instructions provided by the NHS Transformation Directorate (as the “controller”) when verifying your identity. ForNHS Login Privacy Policy please click here. This restriction does not apply to the personal information you provide to PKB separately.
● 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.
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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:
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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.
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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.
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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
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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:
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 assist 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.
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PKB’s Data Protection Officer is David Stone.
● You can write to our DPO: dpo@patientsknowbest.com
Patients Know Best Ltd Contact Routes
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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.
● PKB Manual: https://manual.patientsknowbest.com/
● PKB Information Governance Wiki: https://wiki.patientsknowbest.com/space/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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