The National Cancer Registration and Analysis Service (NCRAS) England Data collection for tumour agnostic treatments Dr Alice Turnbull Programme manager, Public Health England Classified as internal/staff & contractors by the European Medicines Agency
What I will discuss: 1 The National Cancer Registration and Analysis Service (NCRAS) England • A brief background 2 NCRAS principles for data collection • How does this facilitate monitoring of tumour agnostic treatments? 2 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
3 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Our vision… • To provide near-real time, cost-effective, comprehensive, quality-assured data services covering the entire cancer and rare disease care pathways on all patients in England as a resource for • population and public health, patient care, research, quality, safety, clinical team and service performance management, audit, outcome monitoring and commissioning. 4 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Collecting data across the cancer patient pathway GENETIC PRESENTATI PALLIATIVE LIFESTYLE DIAGNOSIS TREATMENT FOLLOW UP DEATH RISK ON CARE Germ-line data Risk factors Screening MDT discussion Surgery PROMs Palliative care Death certificates Socio-demographics Co-morbidities Pathology Chemotherapy Quality of Life Primary care Molecular Radiotherapy Relapse/ recurrence Imaging Clinical audit Clinical audit 5 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
An idea of scale: 6 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Data in the English National Health Service (NHS) There is plenty of it….. 7 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Turning information into knowledge… 8 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
What I will discuss: 1 The National Cancer Registration and Analysis Service (NCRAS) England • A brief background 2 NCRAS principles for data collection • How does this facilitate monitoring of tumour agnostic treatments? 9 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Principles for cancer data collection: 1 2 5 Data Data Operating Data Timelines model value principles access Informing Data Data breadth Scalability Recency analysis and completeness monitoring Continuity Source Direct patient Data depth Data quality (longitudinal traceability care scope) National coverage 10 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Principles for cancer data collection: 1 Data model Data breadth Data depth National coverage 11 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Data breadth Data across the cancer patient pathway… NHS number AND depth Captured in tailored datasets 12 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
SACT dataset: 1. Patient and tumour characteristics 2. Trust and consultant details 3. Treatment characteristics including drug names and drug combinations (regimens) Data structure: 4. Outcome fields 13 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Molecular dataset: 14 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
• Dates: • Test Requested • Sample Taken • Sample received • Report authorised date • Reason for referral • Hospital/Lab demographics • Specimen type • Tumour % • Methodology / technology 15 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
• Test status • Normal • Abnormal • Aberration type • DNA sequence variant • Fusion • Amplification • Etc. • Gene tested • EGFR • BRAF • KRAS • Etc. 16 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
• Genome Build • Transcript ID (incl. version number) • Sequence variant details in HGVS where available • Exon/intron/codon number where specific details not given: • E.g. ‘BRAF codon 600 mutation detected’ 17 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Germline data - pseudonymisation Information from genetics labs NCRAS information Cancer patients Cancer patients Non-cancer patients + hereditary risk Cancer patients MATCH Encryption Personal information Personal information • 1-way Encryption cryptographic hash Added to cancer Future cancer + record diagnosis Germline data LINK Germline data Non-cancer patients + hereditary risk + Germline data 18 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Primary care prescription data: Data items Drug information Drug name ~80 million Patient characteristics Dose Patient age Quantity records a month Sex Form (tablets etc) Exemption category BNF code Net ingredient cost Standard drug identifiers from dm+d Pseudo ID (NHS number & DOB) Prescription form ID Prescriber information Dispenser information Postcode Date dispensed Practice name Organisation responsible for payment Prescription form type Data profile: https://bmjopen.bmj.com/content/8/7/e020980 19 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Linking prescriptions data to cancer records Prescriptions data Cancer registry data Apr 2015 – Feb 2019 1995 – 2018 4,094,077,376 prescriptions 5,471,272 patients 52,193,991 patients Patients alive 1st Apr 2015 2,548,292 patients 96% living cancer patients with prescription data 453,459,478 prescriptions 2,440,172 patients 20 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Identification of Endocrine Therapy 21 BioData World Congress - NCRAS Classified as internal/staff & contractors by the European Medicines Agency
Coverage - data on all cancer patients • Legal permission to collect information on all cancer patients without consent (NHS Act 2006 Section 251) • Activity must: • Have a medical purpose • Be in the public interest or in the interests of improving patient care • Be compliant with DPA/GDPR • Impracticable to obtain consent and anonymised information cannot be used • Yearly review with Confidentiality Advisory Group - Health Research Authority • Data collection embedded in NHS and mandated by contractual requirements 22 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Coverage: Data on all cancer patients nationally SACT : Data from 137 NHS trusts (all centres providing SACT treatment) Molecular : Data from • Regional Molecular Genetics Labs (Somatic and germline) • Molecular section of Pathology Labs (Somatic) 23 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Principles for cancer data collection: 1 2 Data Data model value Data Data breadth completeness Data depth Data quality National coverage 24 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Data completeness ≠ Data quality Maximising completeness AND quality… 25 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Ensuring high data quality: Working to support data providers 26 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Ensuring high data quality: Reporting back to data providers 27 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Ensuring high data quality: Validating data on submission 28 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Ensuring high data quality: Mapping regimens since August 2014 35000 34775 … since then over 80,000 regimens 30150 30000 Number of different regimen names 27850 have been mapped. 25000 22350 20950 20000 19700 17675 15725 15000 12950 11675 10000 9232 9125 8127 7550 6368 5575 5000 4200 3964 3525 2577 1411 17252022 1692 1537 1579 1606 1381 1232 1084 958 1140 1064 1033 1084 963 722 592 0 29 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
Principles for cancer data collection: 1 2 Data Data Operating model value principles Data Data breadth Scalability completeness Source Data depth Data quality traceability National coverage 30 NCRAS overview Classified as internal/staff & contractors by the European Medicines Agency
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