• Contact us
• About us
• The Approval Process
• Costing research
• Patient recruitment
  • > Advocacy services
  • > Patient Demographics Service
  • > Seeking consent
  • > User involvement
• Research into practice
• Compliance with the regulations
• Public Funding for Research
• Freedom of Information
• Training
• R&D News Bulletin
• Clinical Research Centre
• Human Tissue Resource Centre
• QM Information Security
• Barts Health merger: research governance information
• Research Policies and Procedures (SOPs)

Patient Demographics Service

Research projects, audits, or service evaluations may involve researchers contacting a patient, or patients, who are not currently visiting a clinic or subject to current treatment. Researchers may identify patients through hospital records or systems (for example, to send a questionnaire to re their experience of past treatment and services). When this happens there are requirements that must be taken into account: 

• If it is an audit/service evaluation, then registration with the Clinical Effectiveness Unit and approval is required to establish what data is to be accessed and by whom.
• If it is a research project, then registration with the JRMO and also Research Ethics approval is required.

In both scenarios it is vital to take into consideration how patients are contacted and to ensure that checks are made prior to any contact. It is essential to confirm that the patient has the condition you are looking to gather information about (correct audience of patient), that the patient status in the system is up-to-date (for example, their address, if the patient still suffers from the condition, and if the patient is alive or dead). 

In addition to the hospital system checks (to identify potential patients), a due diligence check via the PDS (Personal Demographics Service) is useful. A PDS check is essential when the researcher does not currently see that patient in clinics/ appointments.

Further details of the Personal Demographics Service can be found here.

If you have any queries about registration please contact the Information Governance Team on 020 7480 4682. The team can advise as to access to patient demographics and status.