Data sets - NHS digital, UK Renal Registry, NICOR, Stroke ...

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Data setsNHS digital, UK Renal Registry, NICOR, Stroke Registry, National Diabetes Audit and CPRD

Dr Fergus Caskey

Consultant senior lecturer, University of Bristol

Honorary consultant nephrologist, North Bristol NHS Trust

bristol.ac.uk

Brief

1. Describe the current data sets, registries and other resources in renal disease,

cardiovascular, stroke, diabetes and obesity

2. Examples of integration between different disease datasets

3. What is needed to maximise collection and presentation of data to underpin multi-

morbidity research

bristol.ac.uk

The databases

• NHS digital

• UK Renal Registry

• NICOR

• Stroke Registry

• National Diabetes Audit

• CPRD

Databases Hosting systems

• Other HQIP national audits: Joint; Anxiety depression; Maternal and perinatal; End of life care

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UKRR: The UK Renal Registry

Exported from biochemistry labs

Linked to HES and CR for audit

www.renalreg.org

datasets/the-uk-renal-registry-dataset/

about-us/working-with-us/

Caution!

v3.14 vs v4.2

UK coverage with automatic extraction

from EHRs (via Scottish Renal Registry

for Scotland)

bristol.ac.uk

NICOR: National Institute for Cardiovascular Outcomes Research

The National Cardiac Audit Programme (NCAP) in managed by NICOR:

England Wales and Northern Ireland

6 audits

National Adult Cardiovascular Interventions Audit

Myocardial Ischaemia National Audit Project

National Adult Cardiac Surgery Audit

National Congenital Heart Disease Audit

National Heart Rhythm Management Audit

National Heart Failure Audit

www.nicor.org.uk/

for-researchers/

for-researchers/data-sharing-application-process/

for-researchers/current-research-projects/

Barts

bristol.ac.uk

SSNAP: Sentinel Stroke National Audit Programme

England Wales & NI with 90% coverage

1. Core dataset

All stroke patients admitted to hospital or who suffer acute stroke whilst in hospital

Optional: TIA patients

Excludes

Subarachnoid haemorrhage (I60); Subdural and extradural haematoma (I62)

Stroke more than 28 days before present

2. Other datasets: TIA, interventional and organisational (acute in 2012, 2014 & 2016)

www.strokeaudit.org/

About-SSNAP.aspx

Research/Data-requests.aspx

Formerly SINAP/ NSSA

Kings

bristol.ac.uk

NDA: National Diabetes Audit

England & Wales

All forms of diabetes

No age limits

Primary care – via the General Practice Extraction Service (GPES) if practices accept. Quarterly extract.

Secondary care – via the Clinical Audit Platform, i.e. web-based data entry. Continuous.

www.digital.nhs.uk/

data-and-information/clinical-audits-and-registries/national-diabetes-audit

services/data-access-request-service-dars

NHSD

bristol.ac.uk

NHS Digital

Hospital Episode Statistics

Patient demographics service

Admitted patient care

Outpatients

Critical Care

Civil Registrations (deaths) – formerly ONS

www.digital.nhs.uk/

services/data-access-request-service-dars

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NHS Digital

CURRENT ONBOARDING:

GP datasets

Maternity services

Community services

FUTURE ONBOARDING

Defined timescales:

Electronic prescribing service

Pathology

Undefined timescales:

Neo-natal research

“Onboarding”

Other current datasets:

Diagnostic imaging

Emergency care

Mental health

Secondary User Service PbR

Patient reported outcome measures

National child management programme

bristol.ac.uk

CPRD: Clinical Practice Research Datalink

Primary care records extraction

675 practices across the UK

11m population, 35 million lives

1. UK primary care data only

– Locally held data (your university) or via ISAC

2. Routinely linked to HES and CR

3. Bespoke linkage possible

Working to routinely have linkage to many other databases (including UKRR)

MHRA

www.cprd.com/

data-access

bristol.ac.uk

Brief

1. Describe the current data sets, registries and other resources in renal disease,

cardiovascular, stroke, diabetes and obesity

2. Examples of integration between different disease datasets

3. What is needed to maximise collection and presentation of data to underpin multi-

morbidity research

bristol.ac.uk

Existing linked data

SETTING: UK electronic primary care records from practices contributing to the CPRD linked to HES.

PARTICIPANTS: Adults aged 65+ with a prescription for trimethoprim, amoxicillin, cefalexin, ciprofloxacin, or nitrofurantoin prescribed up to 3 days after a primary care diagnosis of UTI between 4/97 and 9/15.

MAIN OUTCOMES: Acute kidney injury (by ICD code), hyperkalaemia, and death within 14 days of a UTI treated with antibiotics.

STATISTICS: Odd ratios (with IPTW)

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et a

l. B

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1

N=178 238 individuals (422 514 episodes).

bristol.ac.uk

BisCK

NIHR HTA-funded

Aim: to improve our understanding of the risks and benefits of bisphosphonate therapy in patients with Stage 3B+ CKD (eGFR<45).

– Do BPs prevent fractures in CKD 3b+?

– Do BPs worsen CKD?

Methods: To link CPRD, HES and UK Renal Registry (and use Danish and Spanish data to validate).

CPH models with propensity matching

NB. UoO already had a

CPRD-HES linked

dataset “GOLD”Prof Dani Prieto Alhambra, Oxford

bristol.ac.uk

BisCKTime to Hip Fracture

Bisphosphonate users had a HR of 1.25

(1.13, 1.39) for hip fracture.

Prof Dani Prieto Alhambra, Oxford

? NIHR HTA-funded

Aim: to improve our understanding of the risks and benefits of bisphosphonate therapy in patients with Stage 3B+ CKD (eGFR<45).

– Do BPs prevent fractures in CKD 3b+?

– Do BPs worsen CKD?

Methods: To link CPRD, HES and UK Renal Registry (and use Danish and Spanish data to validate).

CPH models with propensity matching

bristol.ac.uk

BisCK

Bisphosphonate users had a HR of 1.54

(1.45, 1.64) for stage worsening.

Time to CKD stage changeProf Dani Prieto Alhambra, Oxford

NIHR HTA-funded

Aim: to improve our understanding of the risks and benefits of bisphosphonate therapy in patients with Stage 3B+ CKD (eGFR<45).

– Do BPs prevent fractures in CKD 3b+?

– Do BPs worsen CKD?

Methods: To link CPRD, HES and UK Renal Registry (and use Danish and Spanish data to validate).

CPH models with propensity matching

bristol.ac.uk

BisCK

Also…

Prof Dani Prieto Alhambra, Oxford

? NIHR HTA-funded

Aim: to improve our understanding of the risks and benefits of bisphosphonate therapy in patients with Stage 3B+ CKD (eGFR<45).

– Do BPs prevent fractures in CKD 3b+?

– Do BPs worsen CKD?

Methods: To link CPRD, HES and UK Renal Registry (and use Danish and Spanish data to validate).

CPH models with propensity matching

bristol.ac.uk

SIMPLIFIED

To determine the effect of colecalciferol60,000IU fortnightly on patient survival

Phase 4, multicentre, open-label, blinded-endpoint, randomised, parallel-group trial

First ‘routine data’ trial in nephrology in UK

Eligible: Adult on dialysis (HD or PD)

Outcome: all-cause mortality

Sample size: 4,200 over 3 years

Follow up: linkage & QoL questionnaire

Real time lab data from Patient View

Dr Thomas Hiemstra, Cambridge

bristol.ac.uk

Other work underway

VICORI

Virtual Cardio-oncology research initiative

CI Dr Dave Adlam, Leicester

Linking:

The National Cardiac Audit Programme (NCAP)

National Cancer Registration and Analysis Service (NCRAS)

Aims to investigate if:

cardiac conditions are managed differently in cancer patients and cardiovascular outcomes are influenced by a prior cancer diagnosis

if cardiovascular treatments, interventions and surgery alter cancer risk or outcomes

if cancer treatments cause long term adverse cardiovascular diseases states or cardiovascular events

if pre-existent cardiac disease alters cancer management or outcomes

bristol.ac.uk

Other work underway

QECKD

Quality and Equity in Cardiac care in Kidney Disease: the promise of big data

CI Dr Jemima Scott, Bristol

Linking:

The National CKD Audit

MINAP

HES, CR & PEDW

UKRR

Aims to explore:

the completeness of acute coronary syndrome (ACS) event capture by MINAP and HES, and determine the validity of the use of admission creatinine (at time of ACS) as a proxy for pre-admission CKD stage.

access to care and outcomes post ACS for the CKD and RRT populations.

From this pilot work we can plan large-scale research studies investigating CVD in CKD populations.

bristol.ac.uk

Brief

1. Describe the current data sets, registries and other resources in renal disease,

cardiovascular, stroke, diabetes and obesity

2. Examples of integration between different disease datasets

3. What is needed to maximise collection and presentation of data to underpin

multi-morbidity research

bristol.ac.uk

What is needed going forwards?

All the data sitting in one place already linked, released for research on a single application!

If that’s not possible:

– Patience (and apply for permissions to link through a trusted third partner)

A better understanding of the suitability of statistical methods to draw causal inferences, particularly with reference to:

– Capturing all the confounding by indication in the routine data

– Time varying nature of confounding/ confounding by indication

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Conclusion

There are lots of data out there

Permissions required – getting clearer

Several organisations are working to bring them together for research

Great opportunities for epidemiology and health inequalities

BUT

Do they capture all the confounders?

What can we conclude applying novel statistics to observational data?

Thank you for your attention

Studies cited:

Trimethoprim and AKI – Dr E Crellin (London)

BisCKD – Prof D Prieto Alhambra (Oxford)

SIMPLIFIED – Dr T Hiemstra (Cambridge)

VICORI – Dr D Adlam (Leicester)

QECKD – Dr J Scott (Bristol)

@fjcaskey @bristolrenal