The National Cancer Registration and Analysis Service (NCRAS) - - PowerPoint PPT Presentation

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The National Cancer Registration and Analysis Service (NCRAS) - - PowerPoint PPT Presentation

Dec 23, 2023 39 likes •650 views

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

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Classified as internal/staff & contractors by the European Medicines Agency

The National Cancer Registration and Analysis Service (NCRAS) England

Data collection for tumour agnostic treatments

Dr Alice Turnbull Programme manager, Public Health England

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Classified as internal/staff & contractors by the European Medicines Agency

What I will discuss:

The National Cancer Registration and Analysis Service (NCRAS) England

  • A brief background

NCRAS principles for data collection

  • How does this facilitate monitoring of tumour

agnostic treatments?

1 2

2 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

3 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Our vision…

4 NCRAS overview

  • 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.

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Classified as internal/staff & contractors by the European Medicines Agency

Collecting data across the cancer patient pathway

5 NCRAS overview

DEATH FOLLOW UP PALLIATIVE CARE DIAGNOSIS TREATMENT PRESENTATI ON GENETIC RISK LIFESTYLE

Socio-demographics Quality of Life Pathology Co-morbidities Chemotherapy Primary care Molecular Radiotherapy Relapse/ recurrence Germ-line data Surgery PROMs Palliative care Death certificates Risk factors Screening MDT discussion Imaging Clinical audit Clinical audit

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Classified as internal/staff & contractors by the European Medicines Agency

An idea of scale:

6 NCRAS overview

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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

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Classified as internal/staff & contractors by the European Medicines Agency

8 NCRAS overview

Turning information into knowledge…

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Classified as internal/staff & contractors by the European Medicines Agency

What I will discuss:

The National Cancer Registration and Analysis Service (NCRAS) England

  • A brief background

NCRAS principles for data collection

  • How does this facilitate monitoring of tumour

agnostic treatments?

1 2

9 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Principles for cancer data collection:

Data model

Data breadth Data depth National coverage

Data value

Data completeness Data quality

Operating principles

Scalability Source traceability

Timelines

Recency Continuity (longitudinal scope)

Data access

Informing analysis and monitoring Direct patient care 10 NCRAS overview

1 5 2

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Classified as internal/staff & contractors by the European Medicines Agency

Principles for cancer data collection:

Data model

Data breadth Data depth National coverage 11 NCRAS overview

1

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Classified as internal/staff & contractors by the European Medicines Agency

12 NCRAS overview

Data breadth

NHS number

AND depth

Data across the cancer patient pathway… Captured in tailored datasets

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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)

  • 4. Outcome fields

Data structure:

13 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Molecular dataset:

14 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

15 NCRAS overview

  • Dates:
  • Test Requested
  • Sample Taken
  • Sample received
  • Report authorised date
  • Reason for referral
  • Hospital/Lab demographics
  • Specimen type
  • Tumour %
  • Methodology / technology
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Classified as internal/staff & contractors by the European Medicines Agency

16 NCRAS overview

  • Test status
  • Normal
  • Abnormal
  • Aberration type
  • DNA sequence variant
  • Fusion
  • Amplification
  • Etc.
  • Gene tested
  • EGFR
  • BRAF
  • KRAS
  • Etc.
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Classified as internal/staff & contractors by the European Medicines Agency

17 NCRAS overview

  • 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’

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Classified as internal/staff & contractors by the European Medicines Agency

Germline data - pseudonymisation

18 NCRAS overview

Information from genetics labs NCRAS information

LINK

Personal information Germline data

+

Germline data Germline data

Cancer patients Non-cancer patients + hereditary risk Cancer patients Non-cancer patients + hereditary risk

Personal information Encryption

  • 1-way

cryptographic hash

MATCH

Encryption

Cancer patients

+

Added to cancer record

Future cancer diagnosis

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Classified as internal/staff & contractors by the European Medicines Agency

Primary care prescription data: Data items

19 Pseudo ID (NHS number & DOB) Prescription form ID Dispenser information Date dispensed Organisation responsible for payment Prescriber information Postcode Practice name Prescription form type Drug information Drug name Dose Quantity Form (tablets etc) BNF code Net ingredient cost Standard drug identifiers from dm+d Patient characteristics Patient age Sex Exemption category

Data profile: https://bmjopen.bmj.com/content/8/7/e020980

~80 million records a month

NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Linking prescriptions data to cancer records

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Prescriptions data

Apr 2015 – Feb 2019 4,094,077,376 prescriptions 52,193,991 patients

Cancer registry data

1995 – 2018 5,471,272 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

NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Identification of Endocrine Therapy

21 BioData World Congress - NCRAS

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Classified as internal/staff & contractors by the European Medicines Agency

Coverage - data on all cancer patients

22 NCRAS overview

  • 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
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Classified as internal/staff & contractors by the European Medicines Agency

23 NCRAS overview

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)

Coverage:

Data on all cancer patients nationally

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Classified as internal/staff & contractors by the European Medicines Agency

Principles for cancer data collection:

Data model

Data breadth Data depth National coverage

Data value

Data completeness Data quality 24 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Data completeness ≠ Data quality

25 NCRAS overview

Maximising completeness AND quality…

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Classified as internal/staff & contractors by the European Medicines Agency

Ensuring high data quality:

Working to support data providers

26 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

27 NCRAS overview

Ensuring high data quality:

Reporting back to data providers

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Classified as internal/staff & contractors by the European Medicines Agency

28 NCRAS overview

Ensuring high data quality:

Validating data on submission

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Classified as internal/staff & contractors by the European Medicines Agency

29 NCRAS overview

34775 30150 27850 22350 20950 19700 17675 15725 11675 9125 7550 5575 4200 3525 2577 1537 963 12950 9232 8127 6368 3964 1692 1084 958 1140 1064 1579 1033 592 722 1411 17252022 1606 1381 1084 1232 5000 10000 15000 20000 25000 30000 35000

Number of different regimen names

… since then over 80,000 regimens have been mapped.

Ensuring high data quality:

Mapping regimens since August 2014

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Classified as internal/staff & contractors by the European Medicines Agency

Principles for cancer data collection:

Data model

Data breadth Data depth National coverage

Data value

Data completeness Data quality

Operating principles

Scalability Source traceability 30 NCRAS overview

1 2

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Classified as internal/staff & contractors by the European Medicines Agency

Scalability and generalisability:

31 NCRAS overview

  • Schema specification
  • Supplementary data

collection

All patients All data providers

  • Minimal submission

burden

  • Adaptation to local

systems

Approaches:

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Classified as internal/staff & contractors by the European Medicines Agency

Adapting to local systems:

32 NCRAS overview

  • 1. Input data:

Electronic data from labs Each data extract in a unique format…

  • 2. Transformation mapping:

Transform data into standard schema for cancer registration system (ENCORE)

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Classified as internal/staff & contractors by the European Medicines Agency

Principles for cancer data collection:

Data model

Data breadth Data depth National coverage

Data value

Data completeness Data quality

Operating principles

Scalability Source traceability

Timelines

Recency Continuity (longitudinal scope) 33 NCRAS overview

1 2

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Classified as internal/staff & contractors by the European Medicines Agency

Recency:

34 NCRAS overview

SACT monthly data submission

Month 1 Month 2 Month 3

Treatment activity DQ & DC checks Upload Submission

Patient treated with SACT NHS provider make data improvements to data MONTH 2: Data is uploaded to the PHE portal & errors resolved All regimen queries must be resolved and data submitted Regimen mapping completed by 15th

September October November December Treatment activity DQ & DC checks Upload Submission Example:

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Classified as internal/staff & contractors by the European Medicines Agency

Continuity:

35 NCRAS overview

Days before or after diagnosis Patient number Day of diagnosis Day of death

Ongoing monthly data collection collecting the complete patient pathway:

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Classified as internal/staff & contractors by the European Medicines Agency

Patients have surgery

Days before or after diagnosis Patient number

36 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Patients are discussed at a multi- disciplinary team meeting

37 NCRAS overview

Days before or after diagnosis Patient number

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Classified as internal/staff & contractors by the European Medicines Agency

Patients have SACT

38 NCRAS overview

Patient number Days before or after diagnosis

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Classified as internal/staff & contractors by the European Medicines Agency

Patients have radiotherapy

39 NCRAS overview

Days before or after diagnosis Patient number

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Classified as internal/staff & contractors by the European Medicines Agency

Patients have imaging investigations

40 NCRAS overview

Patient number Days before or after diagnosis

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Classified as internal/staff & contractors by the European Medicines Agency

Patients get given out-patient appointments

41 NCRAS overview

Days before or after diagnosis Patient number

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Classified as internal/staff & contractors by the European Medicines Agency

Patients come to their out-patient appointments

42 NCRAS overview

Patient number Days before or after diagnosis

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Classified as internal/staff & contractors by the European Medicines Agency

Putting it all together ….

43 NCRAS overview

Days before or after diagnosis Patient number

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Classified as internal/staff & contractors by the European Medicines Agency

Principles for cancer data collection:

Data model

Data breadth Data depth National coverage

Data value

Data completeness Data quality

Operating principles

Scalability Source traceability

Timelines

Recency Continuity (longitudinal scope)

Data access

Informing analysis and monitoring Direct patient care 44 NCRAS overview

1 5 2

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Classified as internal/staff & contractors by the European Medicines Agency

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Audiences:

Payors Clinicians Regulators Patients Industry

Data

NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Our responsibilities as a data custodian are two-fold

46 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Routes to access data:

47 NCRAS overview

Reports to data providers (CancerStats2)

  • Dynamic reporting portal for users within the NHS
  • Includes reports on many NCRAS datasets: COSD,

Radiotherapy (RTDS), SACT, Incidence/Mortality, National Audits, Cancer Alliance Reporting (CADEAS) NCRAS homepage

  • Overview of NCRAS datasets and ongoing work
  • Links to reports and all sources listed below

Public reports (CancerData)

  • Open access tool reporting routine incidence and mortality

data, as well as hosting the National Cancer Taskforce Dashboard which includes a number of metrics

  • Aggregate data released under Open Government Licence
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Classified as internal/staff & contractors by the European Medicines Agency

Trust reports

48 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Trust reports:

SACT treatment activity

Patient, tumour regimen and administration count by month New regimens by month

49 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Treatment activity by day of the week

50 NCRAS overview

Trust reports:

SACT treatment activity

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Classified as internal/staff & contractors by the European Medicines Agency

Direct patient care:

Supporting variant interpretation by genomics labs

51 NCRAS overview

BRCA2 Leu3101Arg

Ca breast 39 Ca pancreas 63 (Late onset breast. Mutation – ve) Ca breast 50

  • d. Ca

cervix 41 Ca ovary 57 (high grade serous)

BRCA2 Leu3101Arg

Ca breast 60s Ca breast 42 (TNBC) Ca breast 64 (ER+)

BRCA2 Leu3101Arg BRCA2 Leu3101Arg

(Hysterectomy 50) Ca breast (?age)

Sex Ethnicity Age at Dx Tumour site Tumour details Family history / other notes Lab Molecular Test Type Test Scope Year of BRCA test F White British 36 breast, R G3 IDC, TNBC Grandmother Hx Ca breast in 40s 1 Diagnostic Full Screen 2017 F White British 31 34 34 humerus, R breast, R breast, R G2 chondrosarcoma G3 IDC, ER+ PR+ G2 LC, ER+ PR+ 1 Diagnostic Full Screen 2016 F White British 26 41 47 cervix breast, L caecum SCC G3 adeno G3 adeno, MMR+, MSS, KRAS-wt 2 Diagnostic Full Screen 2012 F White British 37 breast G2 IDC. 2 Diagnostic Full Screen 2016 F White British 45 breast, R G3 IDC. ER- HER2 borderline IHC 2 Diagnostic Full Screen 2014 F White British 67 tubo-ovarium or primary peritoneal origin high grade serous cystadenocarcinoma FH of breast and ovarian ca 2 Diagnostic Full Screen 2012 F White British 74

  • esophagus

SCC. Same maiden name as case above. 2 Family Studies Targeted test 2013 F White British 33 breast, R G2 IDC, ER+ PR+ HER2- 2 Diagnostic Full Screen 2015 (No match to NCRAS) 2 Family Studies Targeted test 2012 F Not stated 40 breast, R G3 IDC 3 Diagnostic Full screen 2014 F Any Other White Background 42 48 breast, L breast, R DCIS LCIS 3 Predictive Targeted test 2014 F White British 55 breast, L G3 IDC, TNBC 3 Diagnostic Full screen 2016 F White British 43 47 breast, R skin G2 IDC BCC 3 Predictive Targeted test 2016 F White British 55

  • vary, bilateral

high grade serous adenocarcinoma FH ovarian/breast Ca. Diagnosed following risk reduction Lap BSO. 3 Diagnostic Full screen 2016 F White British 75 female genital tract, NOS high grade serous cystadenocarcinoma surname in common with case above 3 Predictive Targeted test 2016 F White British 55 breast, R G3 IDC. ER+, HER2- underwent risk reduction surgery. TLH BSO. 3 Predictive Targeted test 2016 F White British 51 51 probably peritoneal; possibly left fallopian tube or ovary endometrium high-grade serous carcinoma G1 adenocarcinoma 4 Diagnostic Full Screen 2015 F White British 60 68 breast, L

  • vary

G3 IDC high grade serous carcinoma 5 Diagnostic Full screen 2013 F Unknown 71 breast, L G3 IDC. 6 Diagnostic Full screen 2009

National collation of evidence Identifying variant in NCRAS data

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Classified as internal/staff & contractors by the European Medicines Agency

Public reports

52 NCRAS overview

Incidence and survival statistics

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Classified as internal/staff & contractors by the European Medicines Agency

Routes to access data:

53 NCRAS overview

Ad hoc data requests (NCRAS enquiries)

  • Responds to routine enquiries for aggregate data

requiring <0.5day analytical work

  • Data release under Open Government Licence

Direct data access (Office for Data Release)

  • Responds to requests to access identifiable or de-

personalised data PHE data for secondary purposes - which could not be openly released

  • Data can be:
  • individual-level
  • aggregate-level
  • Data releases reported through the Data Release Register
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Classified as internal/staff & contractors by the European Medicines Agency

Office for Data Release:

Data Release Register

Content:

  • Applicant's organisation
  • Applicant's organisation type
  • Technical summary
  • Lay summary overview
  • Why is this project being conducted?
  • How will the data be used?
  • Anticipated public health benefit(s) and/or impact of conducting the project
  • Funders and collaborators
  • Data source
  • Type of data
  • Legal basis for the release of personally identifiable data
  • National data opt-out programme applied
  • Date of release

54 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Routes to access data:

55 NCRAS overview

Analytical partnerships

  • Partner analysts embedded in NCRAS to

conduct projects which align with PHE’s

  • verall objectives
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Reports to inform HTA appraisal:

56 NCRAS overview

The Cancer Drugs Fund Reporting to NICE

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Classified as internal/staff & contractors by the European Medicines Agency

Analysis outputs

30 day mortality post SACT

57 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

Analysis outputs

Age is not a barrier to chemotherapy

58 NCRAS overview

  • Does age independently

predict access to SACT?

  • Is there variable prescribing
  • f systemic therapy

particularly to the elderly?

1000 2000 3000 4000 5000 6000 7000 8000 18-54 55-59 60-64 65-69 70-74 75-79 80-84 85+

Stage IIIB-IV NSCLC Total patients

0% 20% 40% 60% 80% 100% 18-54 55-59 60-64 65-69 70-74 75-79 80-84 85+ Palliative SACT No SACT

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Classified as internal/staff & contractors by the European Medicines Agency

What I will discuss:

The National Cancer Registration and Analysis Service (NCRAS) England

  • A brief background

NCRAS principles for data collection

  • How does this facilitate monitoring of tumour

agnostic treatments?

1 2

59 NCRAS overview

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Classified as internal/staff & contractors by the European Medicines Agency

  • Collecting high quality data relies
  • n co-operation from many

individuals across the healthcare infrastructure

  • We often focus on getting the data

in

  • Must consider how you will get

data back out – particularly to providers

60 NCRAS overview

Closing the loop:

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Classified as internal/staff & contractors by the European Medicines Agency

Any questions?

alice.turnbull@phe.gov.uk

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