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Breast cancer data:
How far can we go
Geoff Hall Medical Oncology, Leeds Cancer Centre
Lead Cancer Clinician & Clinical Lead for Informatics
PPM
Patient Pathway Manager
• In house development since 2001
– Leeds University, Leeds Teaching Hospitals, CR-UK
• Central repository for all electronic data about patients
– Imports data from all available systems (PAS, Chemo, RadioRx, etc)
– Supplemented with annotations, MDTs, CWTs etc
– National Cancer Dataset, COSD collection
• Patients
– All cancers since 1990 (backfill from NYCRIS)
– All chemotherapy and radiotherapy since 1995
– All CWTs including 2-week wait referrals since 2003
PPM – coded database
PPM – plain text EPR
National/Regional Audit
LUCADA, NBOCAP, DAHNO
Clinical Governance Reports
Death within 30 days of chemotherapy - NCEPOD
Clinical Governance Reports
Death within X days of radiotherapy
Clinical Governance Reports
Death within X days of palliative radiotherapy
1
2 to 5
6 to 10
11 to 20
Clinical Outcomes
Survival by diagnosis
CANCER RECURRENCE
PPM
Patient Pathway Manager
• Initial diagnosis
– Completion driven by cancer waiting times
– Data entered/checked at MDTs
– Date, site, morphology (grade, stage)
• Recurrence/progression
– Completion should be driven by cancer waiting times
– All recurrences/progression events not discussed at MDT
• Outcomes
– Date of death linked to PAS, National Patient Demographic Service
– Date last seen (at hospital, aims to link to primary care)
Identification of advanced disease
Potential of informatics
• Advanced disease at diagnosis
– 100% collection of stage at presentation
• Recurrent disease
– Insist CWT record created for EVERY treatment delivered
• Analysis of historical data
1. Analysis of tumour markers
2. PPM Event Profiling
3. Natural language processing of plain text ?
Identification of advanced disease
Tumour markers
Identification of advanced disease
PPM Event Profiling
Identification of advanced disease
PPM Event Profiling
Identification of advanced disease
Finance - LTHT HRG data
Breast cancer
• 1,000 consecutive patients from NYCRIS
– breast cancer (C50), January 1999 to March 2002
– Clinicians reviewed electronic data within PPM to obtain baseline
demographics, details regarding initial presentation, tumour
characteristics and treatment
– All patients were followed up to 31st March 2012 or death if earlier
– For each recurrence /progression event, the date and type of
recurrence, treatment and outcome were also recorded
– HRG data extracted to estimate the costs of care of these patients
Breast cancer
OS and PFS
Breast cancer
Patterns of recurrence
Breast cancer - Patterns of recurrence
All patients
1000
Patients
946
Lost to F/U
54
Rec/Prog 1
214
Alive
522
Dead
210
Rec/Prog 2
119
Alive
23
Dead
72
Rec/Prog 3
69
Alive
6
Dead
44
Rec/Prog 4
41
Alive
4
Dead
24
Rec/Prog 5+
24
Alive
1
Dead
16
17.9 8.6 8
9.4 5.2 5
9.0 4.4 5
- - 39.9
11.3 6.1 6
mOS
months
mPFS
months
mTTP
months
Metastatic breast cancer survival
At presentation versus first recurrence
PPM+
Cancer diagnosis and co-morbidity
• Huge area of interest within cancer
– What is the impact of co-morbidity on cancer treatment and outcomes
– Impact of co-morbidity on management of elderly cancer patients
PPM+
Cancer diagnosis and co-morbidity
• PPM collection of co-morbidity flawed
– Linked to one cancer diagnosis
• Co-morbidity is a flawed concept !
– It is just someone else’s diagnosis
• Example
– Stage 3c, high-grade serous ovarian cancer (BRCA1 mutation)
• Arthritis, diabetes, IHD
– Sero-positive rheumatoid arthritis etc etc
• Ovarian cancer, diabetes, IHD
PPM+
Cancer diagnosis and co-morbidity
• Where can we source co-morbidity
– Cancer registry
• Derive co-morbidity and Charlson Index from HES data
• Diabetes, IHD, COPD etc
– Trust finance and coding
• Clinical activity – OPCS codes – HRGs – HES
– Primary care
PPM+
Cancer diagnosis and co-morbidity
• Where can we source co-morbidity
– Cancer registry
• Derive co-morbidity and Charlson Index from HES data
• Diabetes, IHD, COPD etc
– Trust finance and coding
• Clinical activity – OPCS codes – HRGs – HES
– Primary care
Analysis of PPM+ data
Impact of co-morbidity - diabetes
• Cancer diagnoses from 2000 to 2012
– Co-morbidity present at cancer diagnosis (Y/N)
– 100,000 cancer patients
– 9.5% diabetic incidence
All Lung cancer Melanoma
PPM+
Co-morbidity and coding
8.3 million coding events on 600,000 patients
Cancer Informatics – 2015 and beyond
• Leeds Integrated Cancer Services
• Integrated digital care record
• Empowering the patient
• Access to clinical record
• Data collection by patient
• Home monitoring
• Treatment
• Follow-up
Cancer UK, 2014 and beyond
• Increasing numbers of patients
• Increasing incidence
• Consequence of increase in population and aging demographic
• By 2030, 55% increase in men, 35% increase in women
• Increasing use of cancer treatment especially in the elderly
• Chemotherapy in > 75 : 1998 - 8.6%, 2013 - 20%
• Increased number of cancer survivors
• 2 million in 2010 → 4 million by 2030
• Cancer activity will double in 15 years
Cancer UK, 2014 and beyond
• Current models of care are unsustainable
• New pathways of care are required
• Clinically excellent, patient centred
• Inclusive to all ages, ethnic groups, socio-economic groups
• Financially sustainable
• Based on Leeds strengths in
• Health informatics & telemedicine
Integrated care – current model
Patient
at home
GP
Cancer
Centre
Diabetes
LTHT
Elderly
LTHT
Research
University
Integrated care for cancer, Leeds
Verticalintegration
Horizontal integration
Patient
at home
GP
Diabetes
LTHT
Elderly
LTHT
Research
University
Cancer
Centre
Integrated care for cancer, Leeds
Patient Pathway Manager (PPM)
Integrated care for cancer, Leeds
Patient Pathway Manager (PPM)
Integrated care for cancer, Leeds
Patient Pathway Manager (PPM)
Primary
care
Secondary
care
Community
care
Social
care
Mental
Health
LCR
LTHT have access to
450,000 GP records
103 GPs have access
to LTHT records
Integrated care for cancer, Leeds
Cancer Centre & LTHT
• Continue to develop cancer services
• Continue to deliver and develop excellent care
• Develop new ways of working
• Integrate new treatments/technology
• Solutions
• New technology (SBRT), new services (acute oncology)
• PPM as a trust-wide EPR
• “Clinical intelligence” to understand and improve pathways
• MRC Health Informatics - Leeds Institute of Data Analytics
Integrated care for cancer, Leeds
Cancer Centre & Primary Care
• Improved access to cancer services
• Encourage early referral
• Improved access to investigations
• Direct access to consultants for advice
• Solutions
• Leeds Care Record - Integrate PPM and SystmOne/EMIS
• On-line ‘chat’ facilities for GP to discuss with specialists
• Clinical informatics on linked dataset (MRC: LIDA)
• Re-engineer diagnostic pathways
Integrated care for cancer, Leeds
Cancer Centre & Patient
• Long-term follow-up
• Avoid hospital visits
• Transfer data to support safe care
• Solutions
• Use of community phlebotomy
• Clinical informatics to identify appropriate stratification
• Macmillan: Use of Linked Records
• Internet-based clinical eForms
• Q-Tool (AHSN: Hall & Velikova)
Integrated care for cancer, Leeds
Cancer Centre & Patient
• Home monitoring
• Reduce hospital admissions
• Transfer data to support safe care
• Solutions
• Internet-based clinical eForms – Q-Tool
• eRAPID (NIHR: Velikova) – monitoring of chemotherapy toxicity
• Philips (SBRI: Hall) – home monitoring of blood counts
Integrated care for cancer, Leeds
eRapid and home monitoring
• NIHR programme: Galina Velikova
• Symptom diary for patients – graded toxicity in plain English
• Access via internet, linked to EPR
• Offers medical advice and guides patient to correct care
Integrated care for cancer, Leeds
Empowering the patient
• Q-Tool pilot (AHSN/MRC)
• Server placed on secure N3 network at THIS (Calderdale)
• Calderdale – patient satisfaction
• Bradford Mental Health – patient symptoms
• Leeds and York Mental Health – symptom reporting
• LTHT Rheumatology – PROMs
• 10,000 patient pilot at LTHT
• Check demographics held on PAS
• Request mobile phone number and email
• Seek permission to communicate using electronic means
Integrated care for cancer, Leeds
Empowering the patient
• Patient portal
• Mandated for the NHS by 2018
• Proposed target within Cancer Strategy 2017
• Cancer Research UK and National Cancer Registry
• Access to coded COSD data
• No plan for letters (confidentiality)
• Do we open PPM+ to patients ?
• Leeds Care Record and Open Source Pioneer Ripple programme
Thankyou
The answer’s PPM
Now, what’s the question ?

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Breast cancer data: How far can we go

  • 1. Breast cancer data: How far can we go Geoff Hall Medical Oncology, Leeds Cancer Centre Lead Cancer Clinician & Clinical Lead for Informatics
  • 2. PPM Patient Pathway Manager • In house development since 2001 – Leeds University, Leeds Teaching Hospitals, CR-UK • Central repository for all electronic data about patients – Imports data from all available systems (PAS, Chemo, RadioRx, etc) – Supplemented with annotations, MDTs, CWTs etc – National Cancer Dataset, COSD collection • Patients – All cancers since 1990 (backfill from NYCRIS) – All chemotherapy and radiotherapy since 1995 – All CWTs including 2-week wait referrals since 2003
  • 3. PPM – coded database
  • 4. PPM – plain text EPR
  • 6. Clinical Governance Reports Death within 30 days of chemotherapy - NCEPOD
  • 7. Clinical Governance Reports Death within X days of radiotherapy
  • 8. Clinical Governance Reports Death within X days of palliative radiotherapy 1 2 to 5 6 to 10 11 to 20
  • 11.
  • 12. PPM Patient Pathway Manager • Initial diagnosis – Completion driven by cancer waiting times – Data entered/checked at MDTs – Date, site, morphology (grade, stage) • Recurrence/progression – Completion should be driven by cancer waiting times – All recurrences/progression events not discussed at MDT • Outcomes – Date of death linked to PAS, National Patient Demographic Service – Date last seen (at hospital, aims to link to primary care)
  • 13. Identification of advanced disease Potential of informatics • Advanced disease at diagnosis – 100% collection of stage at presentation • Recurrent disease – Insist CWT record created for EVERY treatment delivered • Analysis of historical data 1. Analysis of tumour markers 2. PPM Event Profiling 3. Natural language processing of plain text ?
  • 14. Identification of advanced disease Tumour markers
  • 15. Identification of advanced disease PPM Event Profiling
  • 16. Identification of advanced disease PPM Event Profiling
  • 17. Identification of advanced disease Finance - LTHT HRG data
  • 18. Breast cancer • 1,000 consecutive patients from NYCRIS – breast cancer (C50), January 1999 to March 2002 – Clinicians reviewed electronic data within PPM to obtain baseline demographics, details regarding initial presentation, tumour characteristics and treatment – All patients were followed up to 31st March 2012 or death if earlier – For each recurrence /progression event, the date and type of recurrence, treatment and outcome were also recorded – HRG data extracted to estimate the costs of care of these patients
  • 21. Breast cancer - Patterns of recurrence All patients 1000 Patients 946 Lost to F/U 54 Rec/Prog 1 214 Alive 522 Dead 210 Rec/Prog 2 119 Alive 23 Dead 72 Rec/Prog 3 69 Alive 6 Dead 44 Rec/Prog 4 41 Alive 4 Dead 24 Rec/Prog 5+ 24 Alive 1 Dead 16 17.9 8.6 8 9.4 5.2 5 9.0 4.4 5 - - 39.9 11.3 6.1 6 mOS months mPFS months mTTP months
  • 22. Metastatic breast cancer survival At presentation versus first recurrence
  • 23. PPM+ Cancer diagnosis and co-morbidity • Huge area of interest within cancer – What is the impact of co-morbidity on cancer treatment and outcomes – Impact of co-morbidity on management of elderly cancer patients
  • 24. PPM+ Cancer diagnosis and co-morbidity • PPM collection of co-morbidity flawed – Linked to one cancer diagnosis • Co-morbidity is a flawed concept ! – It is just someone else’s diagnosis • Example – Stage 3c, high-grade serous ovarian cancer (BRCA1 mutation) • Arthritis, diabetes, IHD – Sero-positive rheumatoid arthritis etc etc • Ovarian cancer, diabetes, IHD
  • 25. PPM+ Cancer diagnosis and co-morbidity • Where can we source co-morbidity – Cancer registry • Derive co-morbidity and Charlson Index from HES data • Diabetes, IHD, COPD etc – Trust finance and coding • Clinical activity – OPCS codes – HRGs – HES – Primary care
  • 26. PPM+ Cancer diagnosis and co-morbidity • Where can we source co-morbidity – Cancer registry • Derive co-morbidity and Charlson Index from HES data • Diabetes, IHD, COPD etc – Trust finance and coding • Clinical activity – OPCS codes – HRGs – HES – Primary care
  • 27. Analysis of PPM+ data Impact of co-morbidity - diabetes • Cancer diagnoses from 2000 to 2012 – Co-morbidity present at cancer diagnosis (Y/N) – 100,000 cancer patients – 9.5% diabetic incidence All Lung cancer Melanoma
  • 28. PPM+ Co-morbidity and coding 8.3 million coding events on 600,000 patients
  • 29. Cancer Informatics – 2015 and beyond • Leeds Integrated Cancer Services • Integrated digital care record • Empowering the patient • Access to clinical record • Data collection by patient • Home monitoring • Treatment • Follow-up
  • 30. Cancer UK, 2014 and beyond • Increasing numbers of patients • Increasing incidence • Consequence of increase in population and aging demographic • By 2030, 55% increase in men, 35% increase in women • Increasing use of cancer treatment especially in the elderly • Chemotherapy in > 75 : 1998 - 8.6%, 2013 - 20% • Increased number of cancer survivors • 2 million in 2010 → 4 million by 2030 • Cancer activity will double in 15 years
  • 31. Cancer UK, 2014 and beyond • Current models of care are unsustainable • New pathways of care are required • Clinically excellent, patient centred • Inclusive to all ages, ethnic groups, socio-economic groups • Financially sustainable • Based on Leeds strengths in • Health informatics & telemedicine
  • 32. Integrated care – current model Patient at home GP Cancer Centre Diabetes LTHT Elderly LTHT Research University
  • 33. Integrated care for cancer, Leeds Verticalintegration Horizontal integration Patient at home GP Diabetes LTHT Elderly LTHT Research University Cancer Centre
  • 34. Integrated care for cancer, Leeds Patient Pathway Manager (PPM)
  • 35. Integrated care for cancer, Leeds Patient Pathway Manager (PPM)
  • 36. Integrated care for cancer, Leeds Patient Pathway Manager (PPM) Primary care Secondary care Community care Social care Mental Health LCR LTHT have access to 450,000 GP records 103 GPs have access to LTHT records
  • 37. Integrated care for cancer, Leeds Cancer Centre & LTHT • Continue to develop cancer services • Continue to deliver and develop excellent care • Develop new ways of working • Integrate new treatments/technology • Solutions • New technology (SBRT), new services (acute oncology) • PPM as a trust-wide EPR • “Clinical intelligence” to understand and improve pathways • MRC Health Informatics - Leeds Institute of Data Analytics
  • 38. Integrated care for cancer, Leeds Cancer Centre & Primary Care • Improved access to cancer services • Encourage early referral • Improved access to investigations • Direct access to consultants for advice • Solutions • Leeds Care Record - Integrate PPM and SystmOne/EMIS • On-line ‘chat’ facilities for GP to discuss with specialists • Clinical informatics on linked dataset (MRC: LIDA) • Re-engineer diagnostic pathways
  • 39. Integrated care for cancer, Leeds Cancer Centre & Patient • Long-term follow-up • Avoid hospital visits • Transfer data to support safe care • Solutions • Use of community phlebotomy • Clinical informatics to identify appropriate stratification • Macmillan: Use of Linked Records • Internet-based clinical eForms • Q-Tool (AHSN: Hall & Velikova)
  • 40. Integrated care for cancer, Leeds Cancer Centre & Patient • Home monitoring • Reduce hospital admissions • Transfer data to support safe care • Solutions • Internet-based clinical eForms – Q-Tool • eRAPID (NIHR: Velikova) – monitoring of chemotherapy toxicity • Philips (SBRI: Hall) – home monitoring of blood counts
  • 41. Integrated care for cancer, Leeds eRapid and home monitoring • NIHR programme: Galina Velikova • Symptom diary for patients – graded toxicity in plain English • Access via internet, linked to EPR • Offers medical advice and guides patient to correct care
  • 42. Integrated care for cancer, Leeds Empowering the patient • Q-Tool pilot (AHSN/MRC) • Server placed on secure N3 network at THIS (Calderdale) • Calderdale – patient satisfaction • Bradford Mental Health – patient symptoms • Leeds and York Mental Health – symptom reporting • LTHT Rheumatology – PROMs • 10,000 patient pilot at LTHT • Check demographics held on PAS • Request mobile phone number and email • Seek permission to communicate using electronic means
  • 43. Integrated care for cancer, Leeds Empowering the patient • Patient portal • Mandated for the NHS by 2018 • Proposed target within Cancer Strategy 2017 • Cancer Research UK and National Cancer Registry • Access to coded COSD data • No plan for letters (confidentiality) • Do we open PPM+ to patients ? • Leeds Care Record and Open Source Pioneer Ripple programme
  • 44. Thankyou The answer’s PPM Now, what’s the question ?