Records of resilience: preserving and promoting de-identified access to the Whitechapel Clinic records

Abstract

Many archive services, particularly those holding healthcare records, impose time-limited restrictions on access to records containing personal data, whilst allowing some limited ethical research access to these records. Access requests are considered in line with the current legislation and archive sector guidance, but it can be unclear to decision-makers which aspects of the complex legislative and regulatory environment relating to health and social care research in the UK pertain to archival access requests. This paper focuses on a case study of the archives of the Whitechapel Clinic, held by Barts Health NHS Trust Archives. It outlines the administrative history of the clinic and the custodial history of its records. It then examines how a request for research access to the records in 2011 led to an innovative collaboration between historians and archivists which supported long-term preservation of the archival data and generated a digital resource designed to satisfy privacy, confidentiality, and NHS research ethics requirements, which has since stimulated significant research. The authors conclude by suggesting a list of points for consideration by researchers proposing to access similarly sensitive and/or restricted records. They endorse recent calls for a collaborative review of current processes and guidance regarding access to restricted records.

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