cprd: an introduction to the clinical practice research datalink in … · 2016. 7. 14. · what is...

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CPRD: An introduction to the Clinical Practice Research Datalink in Cambridge Rupert Payne

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Page 1: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

CPRD: An introduction to the Clinical

Practice Research Datalink in

CambridgeRupert Payne

Page 2: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

What is CPRD?

• Governmental, not-for-profit research service

• Funded by NIHR and MHRA

• VAMP Research (1987) GPRD (1993) CPRD (2012)

• Provides anonymous general practice health records for public health

research, with linkage to additional non-primary care data

• University has annual institutional license to online access of data

• Managed through Primary Care Unit

• Funded by specific projects with additional support from BRC

Page 3: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Primary care data collection

• Primary care data collected from Vision GP clinical software

• Data are recorded as part of routine clinical practice

• Coded data, free text

• Practices assessed for quality of data recording

• Feedback provided to GPs to improve/standardise recording

• Data anonymised at practice, then uploaded to CPRD servers for

processing and validation

Page 4: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

The CPRD population

• 7% sample of UK population

• 5 million “active” patients

• 674 Vision practices

• Mean practice list size:

CPRD=8400, UK=6600

CPRD population 2014

UK population

Page 5: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Overview of primary care data

• Patient – demographics, registration

• Practice – region, collection information

• Consultations – date, duration

• Clinical – diagnoses, administrative details

• Therapy – electronic prescribing

• Immunisation – vaccination details

• Referrals – to secondary care

• Tests – lab results, other measures

• Staff – staff type

Surveys

Biological samples

Embedded trials

Page 6: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Linkages to other data

• Admitted Patient Care Hospital Episode Statistics (HES)

• Outpatient Hospital Episode Statistics (HES)

• Death Registration Data (Office for National Statistics, ONS)

• Cancer registry data (Public Health England)

• Cardiovascular registry data (Myocardial Ischaemia National Audit Project, MINAP)

• On-going linkage: e.g. mental health (MHMDS), HES A&E, digital imaging

• …plus additional bespoke linkages if required

Page 7: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

How well are things recorded?

Herrett, Int J Epidemiol 2015

Page 8: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

CPRD clients

• Academia

• Pharmaceutical industry

• Government

Page 9: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Research that can be done with CPRD

Medication and devices

• Drug utilisation, compliance and persistence

• Pharmacovigilance

• Pharmacoepidemiology

• Pharmacoeconomics

• Life cycle planning

• Licence extension research

Health care interventions

• Comparative effectiveness research

Outcomes

• Clinical outcomes

• Patient Reported Outcomes

Public health research

• Epidemiology

• Health Services research

• Risk management research

• Risk-benefit research

• Risk score development

Clinical trials

• Randomisation at point of care

• Phase 3 and 4 trials

CPRD observational data resources and services

• Disease and drug registers

• Pan European and US data

Page 10: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Publications using CPRD

Page 11: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Cambridge work using CPRD

• Work led by Autism Research Centre

• Women with polycystic ovarian syndrome, and their children, have a

greater prevalence of autism

OR 1.90

(1.32-2.72)

OR 1.58

(1.27-1.98)

Baron-Cohen, unpublished data

Page 12: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Cambridge work using CPRD

• MPhil student project

• Association between

service utilisation and

multimorbidity in persons

with dementia

Browne, unpublished data

Page 13: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Cambridge work using CPRD

• Long-term outcomes of survivors of critical care

• Novel linkage of CPRD and ICNARC-CMP

• Pharmacoeconomics of iron salts utilisation

• Supporting novel drug development

• Medication use in end of life care patients

Page 14: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD

• Messy data • Code lists

diabetes codes

• Big data

Page 15: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Independent Scientific Advisory Committee (ISAC)

“To consider and provide advice to MHRA on … all research projects which

propose the use of data obtained from the Clinical Practice Research

Datalink”

• Advises on medical, statistical, epidemiological and methodological aspects

• Ensures no governance concerns

• All protocols to use data must be first approved by ISAC

• Protocols should adhere to IPSE Good Pharmacoepidemiology Practices

• Some studies may also require other committee approval (e.g. HRA

Confidentiality Advisory Group, HSCIC Data Access Advisory Group)

Page 16: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Core CPRD team

Rupert

Payne

Duncan

Edwards

James

BrimicombeAmelia

Harshfield

Kirsty

Rhodes

Page 17: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Overview of primary care data

• Patient – demographics, registration

• Practice – region, collection information

• Consultations – date, duration

• Clinical – diagnoses, administrative details

• Therapy – electronic prescribing

• Immunisation – vaccination details

• Referrals – to secondary care

• Tests – lab results, other measures

• Staff – staff type

Page 18: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Structure of the data

Page 19: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Structure of the data

Page 20: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Linkages to other data

• Admitted Patient Care Hospital Episode Statistics (HES)

• Outpatient Hospital Episode Statistics (HES)

• Death Registration Data (Office for National Statistics, ONS)

• Cancer registry data (Public Health England)

• Cardiovascular registry data (Myocardial Ischaemia National Audit Project, MINAP)

• On-going linkage: e.g. mental health (MHMDS), HES A&E, digital imaging

• …plus additional bespoke linkages if required

Page 21: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Patient table

Page 22: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Patient table

Page 23: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Consultation table

Page 24: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Clinical table

Page 25: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Clinical table: an example

patid eventdate constype consid medcode staffid adid

1 25-Oct-55 3 546 15797 0 0

1 21-Aug-60 3 546 16944 0 0

1 01-May-65 3 546 2134 0 0

1 01-May-65 3 546 4725 0 0

1 12-Jul-65 3 546 4725 0 0

1 05-Mar-70 1 546 6029 0 0

1 27-Jul-75 1 546 5991 0 0

1 18-Nov-82 1 546 2957 0 0

1 14-Mar-83 4 546 10523 0 0

1 14-Mar-83 1 546 4604 0 0

1 26-Jun-91 6 546 19239 2267 0

1 26-Jun-91 6 542 107 2267 0

1 07-Jun-93 3 543 6573 0 160

1 13-Nov-12 2 550 12947 4628267 163

1 13-Nov-12 2 550 25969 4628267 0

Page 26: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Clinical table: an example

patid eventdate constype consid medcode staffid adid

1 13-Nov-12 2 550 3 4628267 161

1 13-Nov-12 2 550 2 4628267 162

1 15-Nov-12 6 551 6677 29267 0

1 29-Nov-12 6 552 19239 2267 0

1 18-Jan-13 6 554 34 2267 0

1 16-May-13 6 555 106217 2267 0

1 17-May-13 6 556 97061 2267 0

1 16-Sep-13 3 557 6089 23267 0

1 19-Nov-13 6 559 6677 3668267 0

1 22-Nov-13 6 560 6677 2267 0

1 10-Dec-13 6 562 1649 29267 0

1 30-Dec-13 6 563 6677 3668267 0

1 21-Jan-14 3 566 7622 17267 0

1 23-Jan-14 6 567 106221 2267 0

1 23-Jan-14 6 567 106221 2267 0

Page 27: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Clinical table: an example

patid eventdate constype consid medcode staffid adid

1 25-Oct-55 3 546 15797 0 0

1 21-Aug-60 3 546 16944 0 0

1 01-May-65 3 546 2134 0 0

1 01-May-65 3 546 4725 0 0

1 12-Jul-65 3 546 4725 0 0

1 05-Mar-70 1 546 6029 0 0

1 27-Jul-75 1 546 5991 0 0

1 18-Nov-82 1 546 2957 0 0

1 14-Mar-83 4 546 10523 0 0

1 14-Mar-83 1 546 4604 0 0

1 26-Jun-91 6 546 19239 2267 0

1 26-Jun-91 6 542 107 2267 0

1 07-Jun-93 3 543 6573 0 160

1 13-Nov-12 2 550 12947 4628267 163

1 13-Nov-12 2 550 25969 4628267 0

administration

intervention

diagnosis

symptom

examination

Page 28: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Defining your population

• Denominator files

• Define tool

Page 29: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD

• Messy data • Code lists

diabetes codes

• Big data

Page 30: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD – Code Lists??

• Messy data • Code lists

diabetes codes

• Big data

Page 31: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD – Code Lists??

The Art of creating Code Lists...

diabetes codes

Page 32: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD – Code Lists??

(Some) list of Diabetes Codes...

Page 33: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD – Code Lists??

A list of Diabetes Codes

Page 34: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD – Code Lists??

A list of Diabetes Codes

Page 35: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Challenges of using CPRD – Code Lists??

Simple use of a Code List...

Page 36: CPRD: An introduction to the Clinical Practice Research Datalink in … · 2016. 7. 14. · What is CPRD? • Governmental, not-for-profit research service • Funded by NIHR and

Data Manager

(JB)

GP (DE)

Statistician

(KR)

Finance

Coordinator

(TM)

CPRD team

coordinator (AH)

CPRD team lead

(RP)

CPRD Team Functions

• Promote CPRD use e.g. via occasional

presentations for the unit, FAQ via the website,

answer brief queries via the group coordinator, and

open access to any to bring problems to a

fortnightly CPRD-group meeting.

• Assist non-CPRD research e.g. by undertaking

rapid feasibility counts for grants – e.g.

“approximately how many patients with melanoma

and diabetes could we find in the east of England

and how feasible is it to identify them?”

• Provide brief advice and support to groups

wishing to produce CPRD research (but not able

undertake database design, full statistical analysis

or condition phenotyping for them UNLESS

funding has been arranged for required support

and data – BUT we can advise on what is likely to

be required).*

• Coordinate CPRD work within the unit, e.g.

ensuring database design, statistical analysis and

phenotyping strategies are stored, cited and

disseminated.

• Share best practice externally with other

universities using CPRD, and other big data

sources used at Cambridge, e.g. Biobank.

• Ensure sustainable funding.

• Produce publications with increasing quantity,

quality and impact.

• Develop statistical and IT methods and tools to

use CPRD efficiently and in novel ways

Quarterly outcome

measures

Finance

A measure or report on

financial sustainability (to be

developed by finance

coordinator).

Research Activity

1. ISAC applications made

2. ISAC approvals

3. Analyses in progress

4. Writing in progress

5. Submitted papers

6. Publications

Unit Capability

Amplification

1. Rapid feasibility counts

(RDS outcome also).

2. Number of the people in

the unit who have

contributed/are

contributing to a CPRD-

based research study.