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.
Finally, the 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 Parker Moss describes 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:
Cancer pathways
End of life care
Environmental e.g. difficulty of access or possible drug user on premises
Impairment problems (unless there are safeguarding issues e.g. vulnerable children)
Research trials