Disable sharing

In April we will roll out the disable sharing feature. This lets adults stop any sharing of their record with anyone, even in emergency situations. This is important for patients with strong privacy needs.

PKB is a medical record. It must retain data for a medico-legal record as well as securing the data from inappropriate access. So PKB cannot delete data for 8 years after the last time the data were added or accessed. This is to preserve the audit trail of who saw what when in making a clinical decision.

But PKB is the world’s first patient-controlled medical record. The patient controls the access of the data in their PKB record. PKB does this by giving patients the power of control but not the burden of control. This means patients can delegate to others the operation of sharing and professionals can access the record for the patient’s safety during an emergency.

For some patients, personal privacy is more important than clinical safety. We designed the disable sharing feature for these patients.

The following criteria are for a patient to disable sharing:

1. The patient must provide informed consent to disable sharing because there are implications for clinical safety from record access.
2. Patients under the age of 16 cannot disable sharing because professionals have a legal duty to access the record of a child. This is part of the features of looking after a child’s record.
3. Adult patients who lack mental capacity also cannot disable sharing because they cannot give informed consent. There must be an assessment of the patient’s mental capacity before sharing can be disabled.
4. A professional must explain to the patient the implications of disabling sharing, and the other ways to stop sharing.

Once the patient has gone through this process, no one except the patient can see the patient’s medical record in PKB. Even breaking the glass is not possible, so the PKB record cannot be used in an emergency.

At any time in the future the patient can go through the same informed consent process to enable sharing again. But until then, only the patient can access the patient’s PKB record.