Comprehensive Patient Records for Cancer Outcomes
Research type
Research Study
Full title
The use of comprehensive patient records (CPR) to define the impact of cancer, co-morbidities and late effects on individuals and the health service
IRAS ID
188345
Contact name
Geoff Hall
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
The purpose of this part of the ‘CPR for Cancer Outcomes’ study is to securely link information that is non-identifiable (not linked to named individuals) from electronic GP and community (primary care) and hospital records. This information (data) will provide the means to get a very clear picture of what happens to cancer patients across their cancer pathway, and costs involved in care. The linkage will provide a clearer picture of patients' health before the cancer diagnosis and the impact of cancer treatment on subsequent health and wellbeing, and the associated costs.
Data will come through automated processes from two sources:
· Patient hospital records and financial data held at the Leeds Teaching Hospitals NHS Trust (LTHT) to support patient care. This is more detailed than national registry data. We will request non-identifiable items (see attached Data List).
· Primary care records that are opted in to ResearchOne (R1), a research database held by The Phoenix Partnership (TPP). TPP maintain electronic health records for over 5,000 UK healthcare organisations. The NIGB deemed R1 data to be non-identifiable (see attached 'ResearchOne-NIGB-ECC.pdf'). We will request non-identifiable items.
LTHT and TPP will provide non-identifiable data from records of a group (known as a cohort) of cancer patients and cohort of control patients. They will use an automated process to produce the non-identifiable row-level data in line with ICO and NHS standards (containing no identifiers or free text). The non-identifiable data will be encrypted and transferred to a secure environment in the University of Leeds and linked by a third discrete organisation (Integrated Research Campus, IRC). It will be linked using codes known as digests (rather than identifiers) created using a well-tested process called OpenPseudonymiser. Data will remain securely in the IRC with controlled access purely by this research team for this research project.REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
16/NE/0155
Date of REC Opinion
20 May 2016
REC opinion
Favourable Opinion