Disabled sharing

What is disabling sharing?

Disabling sharing means that no one except the patient can view any data in the patient's medical record in PKB other than what they (or members of their team) have added. Even breaking the glass is not possible, so the PKB record cannot be used in an emergency. 

Patients will keep access to all data, even if the data has been added by professionals who no longer have access to their record. Professionals will only see the data their team have previously added to the record, and will not be able to add further data.

What criteria must patients meet to disable sharing?

• Patients must have a national identifier (such as NHS number) to disable sharing. This is to prevent their record being recreated by another user.

• The patient must have the implications of disabling sharing, and the other ways to stop sharing explained to them. It is imperative that the patients understand all actions applied when the record's sharing is disabled so that they can provide informed consent.

Which patients cannot disable sharing to their record?

• Patients under the age of 16 cannot disable sharing because professionals have a legal duty to access the record of a child.

• 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.

How do I disable sharing?

Once logged in, use the search form to locate the patient. Click the 'Disable sharing' link next to the name of the patient (there will not be a link if the patient does not qualify for their sharing to be disabled). Check the box to confirm that someone has gone through the consent process with the patient and complete the rest of the form.

How do I re-enable sharing?

Click the 'Enable sharing' link next to the name of the patient (there will not be a link if the patient doesn’t have their sharing disabled) then complete the form. 

Can I view the history of sharing disabling activity?

Yes, Privacy Officers can view the history of sharing being disabled and enabled in PKB. 

To do this, click the 'View sharing history' link next to the name of the patient.

What happens when sharing is disabled?

• The patient record continues to exist and existing data is retained.

• New data can continue to flow from anywhere to PKB (via HL7/REST/UI) 

• The patient can continue to access data and edit their own data (including privacy labels)

• The patient will continue to receive email notifications when their data is updated (if an email address is recorded) 

• There is absolutely no sharing of data between teams 

• The patient record is not accessible to new teams (including via Break the glass)

• The patient is removed from all teams and the individual professionals and carers that they were sharing with. 

• The patient is no longer searchable at the team level (but is searchable at the org level) 

• In the organisation patient search list, the action ‘Add to my team’ underneath the patient name is no longer visible and is replaced with the message 'Sharing disabled'. The actions to reset password or remind to register remain.

• Clicking the patient's name from the patient search takes you to the 'Team data view' of the patient’s record in the usual way.  This means professionals can access the record but will only see data added by their own team. Data added by the patient, users outside the team or from hospital feeds will be hidden. 

• No notifications are sent to the professionals to notify them of sharing becoming disabled.

• All carers are removed from sharing - no notification is sent. The patient continues to have access to people they care for.

• All tabs under the Sharing page (except Friends and family sub tab) will only show the message 'Sharing has been disabled. For further details please contact the Privacy Officer'.

• Action buttons no longer applicable will display the following warning message 'Sharing has been disabled. For further details please contact the Privacy Officer.'

• A notification email is sent to the patient for confirmation (notification only, no action required)

Dear [patient name]

This is confirmation that sharing has been [disabled/enabled] on your Patients Know Best record by the privacy officer [privacy officer name] from [organisation name] as of [date of action].

Yours, 

Patients Know Best Help Team

• No automatic reversibility (i.e. if patient re-enables sharing they need to be manually re-added to teams and add their carers back manually)

• Patient should still be able to be added as a carer, ask for access to a record and access the people they care for.

What happens if I try to add a patient who's sharing is disabled to my team?

• Via the User Interface - when the 'Invite / add patient' button is used by the coordinator or professional, the user will receive a notification on-screen that reads 'Could not invite this patient as sharing is disabled'.

• Via HL7 - you will not be able to add patients with sharing disabled to teams via hl7 using a ZTM segment in an A28 message.

• You will not be able to add or update a patient’s consent to teams via REST if sharing is disabled. 

• Via CSV upload - Error information is returned if a record fails to be created. The bulk upload report will give the message 'Could not invite this patient as sharing is disabled' 

• Although you will not be able to access their medical record, a professional can still add an email address to the patient's record so that the patient can  still request the ability to register and access their record. 

What access is there via HL7 and REST?

• All REST read access - will be disabled - including BTG access 

• For all APIs return the generic message 'Sharing disabled'

• Write access for HL7/REST will continue. 

What happens with consultations and messages?

• Organisations can continue to post messages (encounters)

• Professionals can no longer initiate new message threads or consultations.

• Patients can no longer initiate new message threads, consultations or start discussions on data-points.

What can patients do in their record when sharing is disabled?

• They can continue to access and add data to most parts of their record, with the following nuances: 

  • Care plans - New care plans cannot be created and edits cannot be made to existing care plans i.e. the shared care planning feature is not available with sharing disabled

  • Symptoms - patients can continue to add but symptom monitoring / reminders will become disabled as soon as sharing ceases.

  • Library - links are retained even when sharing ceases.

Is there an effect on custom integration flows (EMIS, NCRAS etc.)?

• No changes as these are write only