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What is a carer?

In PKB, a carer is someone who has been granted access to a patient record but is not caring for the patient as a clinician. This is normally used by family and friends so they can keep up to date with the latest information in the patient record, and help the patient manage their own care. 

A patient may wish to grant access to their record to a trusted carer, enabling the carer to contribute data to the record just as the patient could as well as using the Events and Messages section with the patient's team.

This is particularly common in cases where the patient has decreased capacity or technical literacy, although any patient (or professional on behalf of the patient) can add a carer.

The carer account is structured just as the patient account is; when the carer logs in they are presented with their own PKB record (which may or may not have data in or be shared with their own professionals and teams). The carer then navigates through Sharing > Friends and Family, and will then see those they care for in a list. Clicking on one of these names brings up that patient's account.

Example of a patient record which has a carer attached.

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A carer can be central to the patient’s health care record and ongoing care using PKB to :

  • View the patient’s medical information

  • Participate in their care by being able to view their test results, view their resource library and see advice from the healthcare professional in the Care Plans on what actions or steps to take when the patient is feeling ill

  • Message the patient’s healthcare professionals, either as well as or on behalf of the patient

  • Support patients in completing questionnaires, either as well as or on behalf of the patient

  • Share the patient’s medical information with other relevant professionals who are involved in their care as and when is needed

  • Have the ability to carry the patient’s electronic health record with them to be able to access anytime, anywhere.

Why

Carers can be added to a patient's record by registered patients or organisations, non registered patients can request that a carer is added to their record via an organisation they are under the care of. This helps look after the patient, and gives them additional support, can increase appointment attendance, medication compliance and patient engagement. For example where a poorly parent is being looked after by their adult child and they can access their record to check appointments.  For parents or guardians, giving them correct access to their child’s record is critical for the health of the child.For more information please see Adding a Parent or Guardian page.

How

It is important that carers have registered for their own personal PKB record before being added as a carer to the patients PKB record. Carers who are not yet registered for PKB should be directed to the NHS Login as seen below. 

Once registered the carer can request to be added to the patient's record either by the patient if they are registered or by a clinical team who is looking after the patient.

Registering as a carer in the UK

  1. Go tohttps://patientsknowbest.com/

  2. Click Register

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  1. Click on the option for UK residents to ‘Register using NHS login’

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  1. Enter your email address into NHS login followed by your password and you will be sent a One Time Password to your mobile phone,  (if you do not have an NHS login, you will be directed through the process to create one).

  1. You will see a registration form to complete. The form requires you to set up a password and security question for your PKB account, enter your address, and to accept both the User Agreement & Privacy Policy for PKB.

  1. Complete the form and click next to log into PKB with your NHS login.

Considerations

  • Carers cannot add other carers

  • Carers cannot change the level of access they are issued

  • Carers cannot access the patient's record via the NHS App, this needs to be done via the web login

  • Carers can add external professionals to the record.

  • Patients and Professional can remove carers from records

  • Carers will be notified that they will be removed from a child's record at their 13th, 16th and 18th birthday unless they request to retain access via a PKB coordinator or professional. 

  • Carers will not be able to see the details of any other carer attached to the patient's record apart from their name and level of privacy access.