Researchers may need to contact former patients who are not currently having treatment or visiting a clinic. This may be useful for certain research projects, audits, or service evaluations.
Researchers may want to identify these former patients through hospital records or systems (eg so that they can send out a questionnaire asking about past treatment and services).
To do this, you need to be aware that:
- If it is an audit/service evaluation, then registration with the clinical effectiveness unit is required, and their approval is necessary to establish what data is to be accessed, and by whom.
- If it is a research project, then you will need to register with the JMRO and research ethics, and approval is necessary.
In both scenarios, it is vital to take into consideration how patients are contacted and to make any checks prior to any contact. It is essential to confirm that:
- The patient has the condition you are looking to gather information about (correct patient audience)
- The patient status in the system is up-to-date (eg their address, if the patient still suffers from the condition, if the patient is alive or deceased).
In addition, a due diligence check via the personal demographics service (PDS) may be useful. This is essential if you do not currently see the patient in clinics or by appointment.
If you have any queries about registration, patient demographics and status, please contact the information governance team at information-governance-PAS-Training@nhs.net