INSIGHTS FOR CARE- BUILDING A PSEUDONYMISED, LINKED, CROSS-SETTING REAL-WORLD EVIDENCE LAB IN BIRMINGHAM, UNITED KINGDOM
Author(s)
Foxcroft R1, Chapman D1, Yassa L1, Bidgoli F2, Cooke M3, Bellary S3, Ronte H1
1Monitor Deloitte, London, UK, 2Merck Sharp & Dohme Limited, Hoddesdon, UK, 3Heart of England NHS Foundation Trust, Birmingham, UK
OBJECTIVES: Heart of England NHS Foundation Trust (HEFT) (Birmingham, UK), Merck Sharp & Dohme Limited and Monitor Deloitte have collaborated to establish the Insights for Care (IfC) Partnership to build the largest Real-World Evidence Lab in the UK, initially focusing on diabetes mellitus and non-small cell lung cancer (NSCLC). IfC works with primary, secondary, tertiary and community pharmacy providers within a Birmingham urban local health economy (LHE) to link pseudonymised (non-identifiable) patient-level clinical and administrative data. The Partnership is anticipated to operate until November 2018, with quarterly data refresh to permit retrospective and prospective studies. METHODS: The dataset covers all LHE patients diagnosed with diabetes or NSCLC since 2008, and captures pre- and post-diagnosis interactions with the NHS. Records include healthcare activities (e.g., dates and procedures), clinical information (e.g., diagnoses and pathology) and prescribing data. In addition to a SQL-based technological architecture, IfC incorporates a rigorous Information Governance framework (including Health Regulatory Authorisation liaison), inter-party governance processes and patient engagement. All patient identifiable information is pseudonymised or removed within the NHS before it is transferred to Monitor Deloitte. Prior to data extraction and at any time patients may opt out of data sharing, while all usage of the dataset is controlled by a multi-stakeholder Governance Board. RESULTS: The IfC team have overcome multiple challenges to establish this cross-industry and cross-care setting partnership. The Real-World Evidence Lab provides more comprehensive coverage of patient activity than existing research datasets (e.g., HES or CPRD), capturing key treatments such as dialysis, high-cost cancer drugs, and specialist diabetes services, and is the only such dataset incorporating community pharmacy. CONCLUSIONS: IfC creates a unique opportunity to understand the local population and their care pathways with more granularity than previously possible, while the cross-provider nature of IfC creates opportunities to collaboratively address LHE improvement opportunities.
Conference/Value in Health Info
2016-05, ISPOR 2016, Washington DC, USA
Value in Health, Vol. 19, No. 3 (May 2016)
Code
PRM66
Topic
Real World Data & Information Systems
Topic Subcategory
Reproducibility & Replicability
Disease
Diabetes/Endocrine/Metabolic Disorders, Oncology