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Use of linked health care data for
research: experiences with the
Hampshire Health Record (HHR)
P Roderick
Academic Unit of Primary Care and Population
Sciences, University of Southampton, UK
Contact: pjr@soton.ac.uk
Acknowledgements
 Hugh Sanderson (founding clinical director)
 NHS South, Central and West Commissioning
Support Unit and the Hampshire Health Record
Information Governance Group
– Elen Hall
 Matt Johnson (UoS analyst)
Hampshire Health Record
Analytical Database
3
• Pseudonymised, individual, linked
extracts of primary and secondary
care records
• Data from about 130 general
practices in Hampshire. Total
registered population about 1 3·
million people (80%)
• Laboratory data from Portsmouth and
Southampton hospitals (600k)
Hampshire Health Record
Uses
 Epidemiology of conditions
– Frequency, determinants, processes of care,
outcomes, costs
– Risk prediction
 Evaluation of interventions
– Primary or secondary care (natural expts)
– Benefits of HHR
 Linkage to existing studies; trial feasibility,
recruitment
 Whole population (Social care, housing…)
Understanding Variations in
Outcome in COPD: Early Results of
an Observational Study using
Routine Clinical Data
L Josephs, M Johnson, P Roderick, D M Thomas
Methods
 Retrospective observational study using
routine individual patient-anonymised data
 Selected Read Codes used to define and
characterise a prevalent cohort with a
practice diagnosis of COPD as at 31/12/10
 2 year follow up of outcomes:
– Hospital admissions (respiratory)
– A/E attendances (respiratory)
– Mortality 7
 Smoking status
recorded in 21,068
patients (99.2%)
 37.8% current
smokers
 51.0% ex-smokers
 10.4% never smokers
8
Smoking
Mortality
 2,446 (11.5%) died (12.2%
men, 10.7% women, p<0.001)
 In those who died:
• mean (SD) age was
greater: 79.2 (9.8) years
versus 70.5 (11.6) years
(p<0.001)
• median (IQR) FEV1 was
lower: 1.04 (0.73 to 1.49)
litres versus 1.39 (0.99 to
1.88) litres (p<0.001),
9
Conclusions
In a broad unselected UK primary care
COPD population, highlights:
high proportion of patients still
smoking (>1 in 3)
poor prognosis of COPD: one in ten
patients died during the 2 years, a third of
with a hospital admission
Antibiotic use in care homes
 High use in Nursing homes especially for
Urinary tract infection (UTI)
 Why--overtreatment for non specific
symptoms; asymptomatic bacteruria
common
 Retrospective cohort 2012. Postcode used
to identify nursing home.
 Sample 8.2% of 1.24 million >75, of whom
7.3% in care homes.
P Sundvall BMC Geriatrics 2015
Antibiotic prescriptions/100
0
20
40
60
80
100
120
140
160
180
200
<75 >75 no NH >75 NH
All
UTI
Adjusted odds ratio for NH UTI 2.2 if
no catheter, 1.4 if catheter
Chronic kidney disease (CKD)
 Identified people with prevalent (2008) and incident
CKD stage 3–5 between 2008 and 2011 was identified
from the UK Hampshire Health Record (HHR) using
eGFR values.
 Two values of eGFR <60 mL/min per 1 73 m² at least 3·
months apart (and previous eGFR >60 mL/min per
1 73 m² or no previous eGFR value)·
 QOF-registered CKD identified by relevant Read codes.
S Fraser et al BMC Family Practice 2015
CKD Results
88 practices with continuous pathology records 2008-
2013
Total over 18 population = 498,631
Prevalent CKD at end 2008 = 24,021 (4.8%)
Incident CKD 2008-2013 = 15,736
QoF register and Urinary ACR testing
Incident cohort:
46% had a
record of ever
having an uACR
63% QoF
registered
The Hampshire AKI Study
Simon Fraser
Paul Roderick
Mark Uniacke
Matthew Johnson
Borislav Dimitrov
David Culliford
Lily Yao
2012 2013 2014 2015 2016 2017 2018
Incidence and consequences
of community and hospital AKI
Introduction of e-alerts and
clinician professional
development programme
Incidence and consequences
of community and hospital AKI
PRE POST
Validate community AKI
prediction tool
HHR
 Strengths
 Population based
 Used for individual care
 Laboratory data
 Scope for extension
– Geography, data
– Wider edu/env/housing
 Free text
 Limitations
 Data quality
– Missing
– enter, leave
 Exclusions from HHR
 No cause of death
 No microbiology/radiology
data
 Logistics
– size, coding
Ongoing
– EPIDEMIOLOGY /VARIATION
• Dementia, Liver disease pathways
• Cancer survivor prevalence
• Multimorbidity, frailty, treatment burden
• Maternity-child health
• Fuel poverty
– EVALUATION
• Atrial fibrillation detection (Watch BP), NHS Vascular
Checks
• Alcohol detoxification
HHR Users
“I think it is
fantastic and
use it all the
time.” - GP
“Having access to results
and reports from other
hospitals saves time and
resources”. Hospital
consultant.
“…help make
an informed
decision;
provides the
patient with
confidence.” -
GP
“Possibly the
Hampshire
Health
Record saved
her life” - GP
“it enables me to work
more closely with
consultants in
developing plans of
care” - Nurse
Specialist
“The patient is
prescribed the
correct and
appropriate
medication as
soon as possible.”
- Community
Pharmacist
'Use of linked health care data for research: experiences with the Hampshire Health Record' - Paul Roderick

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'Use of linked health care data for research: experiences with the Hampshire Health Record' - Paul Roderick

  • 1. Use of linked health care data for research: experiences with the Hampshire Health Record (HHR) P Roderick Academic Unit of Primary Care and Population Sciences, University of Southampton, UK Contact: pjr@soton.ac.uk
  • 2. Acknowledgements  Hugh Sanderson (founding clinical director)  NHS South, Central and West Commissioning Support Unit and the Hampshire Health Record Information Governance Group – Elen Hall  Matt Johnson (UoS analyst)
  • 3. Hampshire Health Record Analytical Database 3 • Pseudonymised, individual, linked extracts of primary and secondary care records • Data from about 130 general practices in Hampshire. Total registered population about 1 3· million people (80%) • Laboratory data from Portsmouth and Southampton hospitals (600k)
  • 5. Uses  Epidemiology of conditions – Frequency, determinants, processes of care, outcomes, costs – Risk prediction  Evaluation of interventions – Primary or secondary care (natural expts) – Benefits of HHR  Linkage to existing studies; trial feasibility, recruitment  Whole population (Social care, housing…)
  • 6. Understanding Variations in Outcome in COPD: Early Results of an Observational Study using Routine Clinical Data L Josephs, M Johnson, P Roderick, D M Thomas
  • 7. Methods  Retrospective observational study using routine individual patient-anonymised data  Selected Read Codes used to define and characterise a prevalent cohort with a practice diagnosis of COPD as at 31/12/10  2 year follow up of outcomes: – Hospital admissions (respiratory) – A/E attendances (respiratory) – Mortality 7
  • 8.  Smoking status recorded in 21,068 patients (99.2%)  37.8% current smokers  51.0% ex-smokers  10.4% never smokers 8 Smoking
  • 9. Mortality  2,446 (11.5%) died (12.2% men, 10.7% women, p<0.001)  In those who died: • mean (SD) age was greater: 79.2 (9.8) years versus 70.5 (11.6) years (p<0.001) • median (IQR) FEV1 was lower: 1.04 (0.73 to 1.49) litres versus 1.39 (0.99 to 1.88) litres (p<0.001), 9
  • 10. Conclusions In a broad unselected UK primary care COPD population, highlights: high proportion of patients still smoking (>1 in 3) poor prognosis of COPD: one in ten patients died during the 2 years, a third of with a hospital admission
  • 11. Antibiotic use in care homes  High use in Nursing homes especially for Urinary tract infection (UTI)  Why--overtreatment for non specific symptoms; asymptomatic bacteruria common  Retrospective cohort 2012. Postcode used to identify nursing home.  Sample 8.2% of 1.24 million >75, of whom 7.3% in care homes. P Sundvall BMC Geriatrics 2015
  • 12. Antibiotic prescriptions/100 0 20 40 60 80 100 120 140 160 180 200 <75 >75 no NH >75 NH All UTI Adjusted odds ratio for NH UTI 2.2 if no catheter, 1.4 if catheter
  • 13. Chronic kidney disease (CKD)  Identified people with prevalent (2008) and incident CKD stage 3–5 between 2008 and 2011 was identified from the UK Hampshire Health Record (HHR) using eGFR values.  Two values of eGFR <60 mL/min per 1 73 m² at least 3· months apart (and previous eGFR >60 mL/min per 1 73 m² or no previous eGFR value)·  QOF-registered CKD identified by relevant Read codes. S Fraser et al BMC Family Practice 2015
  • 14.
  • 15. CKD Results 88 practices with continuous pathology records 2008- 2013 Total over 18 population = 498,631 Prevalent CKD at end 2008 = 24,021 (4.8%) Incident CKD 2008-2013 = 15,736
  • 16. QoF register and Urinary ACR testing Incident cohort: 46% had a record of ever having an uACR 63% QoF registered
  • 17. The Hampshire AKI Study Simon Fraser Paul Roderick Mark Uniacke Matthew Johnson Borislav Dimitrov David Culliford Lily Yao
  • 18. 2012 2013 2014 2015 2016 2017 2018 Incidence and consequences of community and hospital AKI Introduction of e-alerts and clinician professional development programme Incidence and consequences of community and hospital AKI PRE POST Validate community AKI prediction tool
  • 19. HHR  Strengths  Population based  Used for individual care  Laboratory data  Scope for extension – Geography, data – Wider edu/env/housing  Free text  Limitations  Data quality – Missing – enter, leave  Exclusions from HHR  No cause of death  No microbiology/radiology data  Logistics – size, coding
  • 20. Ongoing – EPIDEMIOLOGY /VARIATION • Dementia, Liver disease pathways • Cancer survivor prevalence • Multimorbidity, frailty, treatment burden • Maternity-child health • Fuel poverty – EVALUATION • Atrial fibrillation detection (Watch BP), NHS Vascular Checks • Alcohol detoxification
  • 21. HHR Users “I think it is fantastic and use it all the time.” - GP “Having access to results and reports from other hospitals saves time and resources”. Hospital consultant. “…help make an informed decision; provides the patient with confidence.” - GP “Possibly the Hampshire Health Record saved her life” - GP “it enables me to work more closely with consultants in developing plans of care” - Nurse Specialist “The patient is prescribed the correct and appropriate medication as soon as possible.” - Community Pharmacist

Editor's Notes

  1. Thank you Research group goes back 2010 Range of work grown CLAHRC
  2. Colleagues
  3. Started 2003-4 as Electronic Hampshire clinical Repository PAS Comm hlth Southern 1 ccg social care Goverance ..opt out, widely advertised, and one register 6k/2.85m 0.2% Stric Uses Structured Query Language (SQL) - programming language designed for managing data held in a relational database management system t rules of access
  4. GP=hosp
  5. HHR=A with CDSC re MSRA surveillance Linkage hosp to community
  6. Ckd reg assoc low egfr female dmhtcvd Timely acr assoc reg dm higher egfr TIMELY cKD vreg and ACr poor
  7. Exclusions STD, ToP, Abuse , IVF, marital, prison Practical issues re size of databases (AKI), complex algorhythms based on biochem, Missing ethnicity, ACR
  8. STREAM Br Ca