Your organisation should be conservative in registering patients with safeguarding concerns, but should send all data for all patients. As you gain confidence and capacity in patient registration you can register safeguarding patients. But there is no benefit from delaying sending data, the patient loses out from every month you haven’t placed data in their record, and having filters for which patients’ records have data takes up IT resources. Focus your IT resources on sending all data for all patient records, and focus you non-IT resources on the correct registration process for each patient.
Each organisation has to iteratively make the judgement as its registration processes mature. In the beginning you start with the easy patients i.e. adults (not children) where the probability and harm of the wrong person getting access is outweighed by the probability and benefits of the right person getting access. Where you are worried for a patient’s safety from a different person getting the registration later is when you delay registration for more robust identity-verification processes e.g. in-person with identification.
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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, and please see Parker Moss describes describing how access helped him during the childhood cancer of his daughter, Vanessa. And as you heard from Imperial, they have had 3 years of patients with cancer getting their data, and no problems.
We suggest the following should be excluded in early registration:
Patients with safeguarding flags e.g. risk of abuse
Female genital mutilation
Behavioural: consider carefully for exclusion patients with attempted suicide intent, history of self harm, history of mental health action detentions
Sexually-transmitted infections e.g. blood-borne viruses
Multi-agency public protection arrangements (MAPPA)
Do not exclude patients with:
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Cancer pathways
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End of life care
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Environmental e.g. difficulty of access or possible drug user on premises
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Impairment problems (unless there are safeguarding issues e.g. vulnerable children)
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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.