We try to trace study members using information held by government departments and agencies.
We securely transfer the personal details (name, sex, date of birth, and last known address) of study members to NHS Digital who use these details to identify our study members using the NHS Personal Demographic Service (PDS), a database which holds details of users of health and care services in England. Once study members are identified on the PDS, NHS Digital periodically send us up-to-date addresses.
NHS Digital will also inform us if you have died or moved out of the country.
Next Steps has also tried to trace study members using using the National Pupil Database and the Individualised Learner Record held by the Department for Education. The National Pupil Database contains the addresses of all state school pupils in England, which are collected through schools. The Individualised Learner Record collects information on learners and their learning at further education colleges, sixth form colleges, independent learning providers and voluntary and community organisations in England. We may use other government databases in the future.
This kind of personal information is not given out routinely by government departments and agencies. Special permissions are needed, and this is only done after a careful review of why this information is needed, ethical issues and data security procedures. For the information coming from the NHS, special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and NHS Digital Data Access Advisory Group is needed.