Breast cancer data:How far can we go

Geoff Hall Medical Oncology, Leeds Cancer Centre

Lead Cancer Clinician & Clinical Lead for Informatics

PPMPatient 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 AuditLUCADA, NBOCAP, DAHNO

Clinical Governance ReportsDeath within 30 days of chemotherapy - NCEPOD

Clinical Governance ReportsDeath within X days of radiotherapy

Clinical Governance ReportsDeath within X days of palliative radiotherapy

1

2 to 5

6 to 10

11 to 20

Clinical OutcomesSurvival by diagnosis

CANCER RECURRENCE

PPMPatient 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 diseasePotential 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 data1. Analysis of tumour markers

2. PPM Event Profiling

3. Natural language processing of plain text ?

Identification of advanced diseaseTumour markers

Identification of advanced diseasePPM Event Profiling

Identification of advanced diseasePPM Event Profiling

Identification of advanced diseaseFinance - 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 cancerOS and PFS

Breast cancerPatterns of recurrence

Breast cancer - Patterns of recurrence

All patients

1000

Patients

946

Lost to F/U

54

Rec/Prog 1

214Alive

522Dead

210

Rec/Prog 2

119Alive

23Dead

72

Rec/Prog 3

69Alive

6Dead

44

Rec/Prog 4

41Alive

4Dead

24

Rec/Prog 5+

24Alive

1Dead

16

17.9 8.6 8

9.4 5.2 5

9.0 4.4 5

- - 39.9

11.3 6.1 6

mOSmonths

mPFSmonths

mTTPmonths

Metastatic breast cancer survivalAt 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

Patientat home

GP

Cancer

CentreDiabetes

LTHT

ElderlyLTHT

ResearchUniversity

Integrated care for cancer, Leeds

Vert

ical in

tegra

tion

Horizontal integration

Patientat home

GP

DiabetesLTHT

ElderlyLTHT

ResearchUniversity

Cancer

Centre

Integrated care for cancer, LeedsPatient Pathway Manager (PPM)

Integrated care for cancer, LeedsPatient Pathway Manager (PPM)

Integrated care for cancer, LeedsPatient 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, LeedsCancer 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, LeedsCancer 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, LeedsCancer 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, LeedsCancer 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, LeedseRapid 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, LeedsEmpowering 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, LeedsEmpowering 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 ?