Why do we need to exclude some patients from registration:
It is essential that decisions are made regarding inclusion and exclusions for registration at the outset of the project - not having clear direction on this will delay the registrations workstream.
PKB recommends that records are created for all patients who have had an episode of care or treatment at the organistion within the past 5 years and that data should populate all these records as soon as the requisite data feeds are switched on.
We recognise however that there will be occasions and circumstances where registering some patients to access their records is not appropriate - for example if patients are currently in prison, if there are safeguarding flags or concerns or if a patient is not deemed to have capacity to consent or is not Gillick competent in the case of children and young people. These patients should therefore be excluded from whatever registration methods are chosen by the Organisation.
What are PKB recommended Registration Exclusions:
PKB recommends that all Organisations exclude the following from their registration methods:
Deceased patients
Prisoners
Patients with safeguarding flags or concerns (depending on local agreed policy)
Any further exclusions needed can be agreed specifically when working with your project team.
What not to Exclude:
Exclusions of registration should not be by speciality. For example, oncology and palliative care should not be considered for exclusion. There is no harm from a patient getting access to their cancer data, and plenty of harm from them not getting the data. PKB's customers have good evidence to suggest otherwise, please see Parker Moss describing how access helped him during the childhood cancer of his daughter, Vanessa.
How do we exclude patients from registrations:
Exclusion work is done within the Record Creation and Integrations workstream and your PKB project manager and integrations specialist will be able to talk you through the process required.