Storage: all records
It is important that all patients have their records created on PKB and this includes all children under 16. There is no additional information governance risk from storing children’s records on PKB – a child’s record is a medical record, PKB stores medical records encrypted. But there is additional safety for the welfare of child from storing their record in PKB – the record can be shared more widely for integrated care, and more transparently for safeguarding.
Therefore organisations can and should include children in any CSV upload or HL7 record creation. These include any children with safeguarding flags as these are the ones who may need their data to be shared between clinicians the most.
Access: use existing paediatric protocols
Information governance for a child’s records is about who gets access. The sooner the child can have access, the better for their long-term ability to understand and manage their health, but of course each child gains capacity at a different age. With parents and carers, each child will have different family circumstances and state support. These govern who needs access, who does not need access, and who needs to not have access. As the child approaches adulthood, parents get less access to the record. But some young adults may still need access if they have learning difficulties.
- Create all the records for all children without using an email address. Do not exclude if they are under safeguarding, the record must be there for other professionals to see. Create these records via CSV upload or HL7 feed.
- Add all of your professionals to your organisation’s umbrella team with. You can do this easily via a CSV upload.
- Register each parent or carer for these children as a patient themselves with the adult’s national identifier (eg NHS number). The adult needs their own PKB record for their own health, they will need this from the same organisation looking after the child, it is right to verify their identity as a patient in the same process of verifying their identity as carer. If you do not do this, the carer will end up with two separate PKB records which is unnecessary and inconvenient.
- Check if the parent/adult carer already exists in PKB by searching for them across your organisation list (see supporting video).
- If already registered in PKB, add them as a carer to the child record using these instructions (supporting video here)
- If not yet registered, add the email address to their record (see supporting video) then add them as a carer to the child’s record as above.
- If there is no record in PKB when you search for them, create this record in the umbrella team for your organisation. Then add them to the child’s record
- Exclude under 16s from mass registration. If you are mass registering your patient cohort using automated means - by kiosk, HL7 feed, by CSV upload, SMS messages or letters - include a rule to prevent under 16s from being invited in this way.
This is because the invitation is likely to be received by a parent/adult carer on the child’s behalf and they will inadvertently register as the patient on behalf of the child. The children’s record should therefore be created but they must have the carers invited to the records manually as above.
- In accordance with customer’s existing local policies, PKB recommends that clinicians can manually register a child with their own email address (without requiring a carer to be added) using their clinical judgement. This is following for example a Gillick competence test or a Fraser guidelines assessment of the child’s understanding of benefit and risks from having access to their record.