Organisations are starting to mass-register carers so they can access their children’s records. Using our new carer API, they check the access and registration status of carers linked to their paediatric patients. This blog post outlines the other child health and child safety features that the carer API is adding to.
New feature: Carer API
Organisations can now pull a list of carers for a given patient from the new $carers FHIR custom operation.
The new custom operation allows organisations to easily check, from their EPR, whether a given patient has carers and, if so, who they are. This makes it easier for clinicians to make decisions around safeguarding for children who come into their care. After making the necessary safeguarding checks, they can accelerate the registration and access of parents.
Organisations will call the custom operation with a patient’s NHS number and will get back a FHIR bundle of Consent and Patient resources. For each carer, the bundle will contain one FHIR Consent resource, which contains the privacy labels that the carer has access to, and one FHIR Patient resource, which contains the carer’s name and contact information.
Other Child Safety and Child Health Features
Freeze record
Clinical teams use the freeze record feature to protect patients who are unable to manage their own records, such as those experiencing a crisis, or to investigate potential safeguarding concerns. Team professionals can restrict access to a patient’s record for the patient and their carers by clicking ‘Freeze record’ when viewing a patient’s record. When a record is frozen, patients can no longer log in and carers will not be able to view the patient’s PKB record. When the patient attempts to log in or the carer tries to access the record, they are shown a message stating that the record is unavailable.
The ‘Freeze record’ button, as seen by a team professional
Automatic Carer Removal
Carers are automatically removed from paediatric patients’ records at key milestones as they grow up, unless a professional in their team overrides this removal. Carers are automatically removed from a patient’s record on their 13th, 16th and 18th birthday. This approach aligns with the EU General Data Protection Regulations 2018 (GDPR) and the UK Data Protection Act 2018 (the DPA 2018), which state that children and young adults can assume control over their personal information and restrict access to it from the age of 13.
PKB sends an email to patients and their carers one month before each of these milestones, letting them know that the carer will be removed unless they take action. To prevent the removal, the carer or patient should get in touch with the clinical team.
You can read more about automatic carer removal in our manual and in this previous blog post.
A team professional preventing the removal of a carer for a patient approaching their 13th birthday
Enforcing Carer Access
Team professionals can also prevent patients and other carers from removing or changing the access granted to specific carers. If a patient or carer attempts to remove or change a carer’s access after a professional has ticked ‘Patients & carers cannot edit sharing’, they are shown an error message.
This feature is useful in scenarios where specific individuals need to retain access to a patient’s record, for example, when the child’s parents are separated or has a difficult home situation.
A professional preventing a carer from being removed from a patient’s record
Growth Charts
PKB automatically generates and displays growth charts for patients under 18 years old. Height and weight measurements in these patients’ records are plotted on World Health Organisation growth charts, allowing the child’s healthcare team and carers to track the child’s development against the WHO Child Growth Standards and identify issues.
A child’s height plotted on the WHO growth chart for boys
A child’s weight plotted on the WHO growth chart for boys
You can read more about WHO growth charts in PKB in our manual.
Restricted Registration Paths
When a child is too young to have an email address or manage their own health record, their clinical team should set up a PKB record without an email address. The clinical team can add carers with different levels of privacy access, allowing the carer to see data in the child’s record that matches the privacy access they have. The carer can also act as the child’s proxy by adding data to the record and communicating with the child’s healthcare team.
When the child turns 16, they can register for PKB using their NHS login. This will add their email address to the record and allow them to control it. Carers will still have access to the record if the clinical team has retained their access or if the patient adds them back.
Registration using NHS login and registration tokens is not available for patients under 16. If a clinical team thinks a child is mature enough to manage their own record before they turn 16, they can manually send them an invitation to register.