Transcript Closing the Gap: the UK Renal Registry

CD FORUM:
REGISTRY UPDATE,
THE WHO WHAT, HOW, WHERE, WHEN AND WHAT
NEXT.
Damian Fogarty
Chairman, United Kingdom Renal Registry
Consultant Nephrologist and Senior Lecturer
Queen’s University Belfast and Belfast City
Hospital, Northern Ireland, UK.
[email protected]
[email protected]
0117 323-5665
CD forum London 4th March 2011
Renal Registry Management Board
(Renal Association Trustees)
Registry Chairman Dr Damian Fogarty
Registry Committee/Study Groups
Director
Prof Terry Feest
Deputy Director
Chris Maggs
Registry Registrars
Dr Clare Castledine
Dr Dan Ford
Dr Lynsey Webb
General Manager
Hilary Doxford
Systems & Data
Manager
David Bull
Clinical Informatics
Manager
Fiona Braddon
Project Manager
Sue Shaw
External Project
Contractors
Senior
Clinical Data
Manager
Paul Dawson
Programmers (p/t)
Matthew Brealey
Andy Langdon
Clinical Data Management
Becky Blackwell
Lynsey Billet
Fran Benoy-Deeney
External IT
Contractors
Senior Statisticians
Julie Gilg
Margaretha Steenkamp
Statisticians
Anna Casula
Dirk van Schalkwyk
STAFF ISSUES
1st Director, Dr David Ansell left October 2010
 Deputy director Prof Chris Maggs retired Feb 2011


Job description for new Director
National Audit role and experience
 Understanding renal data
 Making best use of renal systems and linkage to others

? Epidemiologist
 ? Clinical Input

I’M A RRT PATIENT-GET MY DATA OUT OF HERE!

16 UK Renal Information
systems

Ye must
return
data to us
@UKRR
Systems for
PD vs HD vs Tx vs CKD
Transplant (eg CTS)
 POET
 ADEQUEST


75 units x 4 files for each
quarter
4
DATA PROCESSING
……SLOW BUT SURE!
Report run and
sent to Renal
Registry
Data file received
RR No’s
received from
System Mgr
Errors checked by
Data Mgr &
corrected by Units
Data File Cracked
Validation Macro
Missing data/errors
faxed/emailed to units
Errors corrected
Units contacted
with missing data
Units correct errors and
send corrections
Missing Data
received
File loaded on
database
Data
checked by
senior data
manager
RR No’s
Issued to units
to be
uploaded
Upload Numbers
Report produced
Data File given to
Data Mgrs for
Validation
Checked by
Senior Data
manager
Checked and
corrected by data
managers
Data file amended
PROJECTS IN USE AND/OR DEVELOPMENT
Paediatric merger
 UKT data sharing
 Renal Patient View
 RCP – HES link
 Patient orientated reports
 RADAR
 ATTOM
 Vascular Access audit

NATIONAL RENAL UNIT SURVEY 2010
CLARE CASTLEDINE AND FERGUS CASKEY

Aims:
 a) Identify & measure characteristics of renal centres
associated with RRT incidence

b) Identify & measure characteristics of renal centres associated
with the incident home dialysis as modality

Methods:

Systematic literature review then expert panel consensus
→

43 questions: demographics, staffing, referrals, service provision and
decision making processes.
PRELIMINARY RESULTSRRT incidence
 71 of 72 units responded
396 nephrologists in UK
(whole time equivalents)
 Median 6.9 doctors pmp
(England only)
 Median 1.6 doctors per
100 dialysis patients
 Median 1.06 education
team members per 100
incident pts
Home dialysis therapies
 193 home team members in UK
Median 1.7 (0.6-2.7) per 100
incident patients
 Median 2.9 (1-8) home team
members per million population
(England only)




32% of centres had physicians
who could insert PD catheters
29% centres use acute PD
More at Renal Association
ANNUAL REPORTS
“A resource in the development of renal
patient care in ……comparative data for audit,
benchmarking, planning, policy and research.”
60 Million people

75 Main Renal Units

Quarterly data downloads

47,525 prevalent patients 31st December 2008
Annual report on unit activity-incidence, prevalence, modalities
Unit performance displayed as caterpillar plots and funnel charts



Figure 4.3: Growth in prevalent patients, by treatment modality
at the end of each year 1982-2008
PD
40,000
Home HD
35,000
HD
Transplant
30,000
25,000
20,000
15,000
10,000
5,000
Year
UK Renal Registry 12th Annual Report
2008
2006
2004
2002
2000
1998
1996
1994
1992
1990
1988
1986
1984
0
1982
Number of patients
45,000
Centre
Changing demographics
over lifetime of UKRR
UK Renal Registry
12th Annual Report
UK
Wales
Scotland
N Ireland
England
L Barts
M Hope
L Guys
Bradfd
L St.G
Liv RI
M RI
Ipswi
Dudley
Prestn
Donc
L Rfree
Newry
Newc
Airdrie
Nottm
Leeds
L West
Abrdn
Covnt
Plymth
Cardff
Bristol
Glasgw
L Kings
B QEH
Glouc
Redng
Sund
Wirral
Stevng
Oxford
Swanse
Carlis
Ports
Hull
Ulster
Leic
Edinb
Wolve
Liv Ain
Sheff
Stoke
Derby
Sthend
Basldn
Kent
Middlbr
Belfast
B Heart
Wrexm
Inverns
Clwyd
Carsh
Camb
Exeter
Shrew
Norwch
Klmarnk
Dorset
Colchr
Dunfn
Brightn
D&Gall
Antrim
Dundee
Tyrone
Bangor
Truro
York
Chelms
50
55
60
65
70
75
PD→ASSISTED PD
LIMITATIONS AT UNIT AND UKRR LEVEL

IT infrastructure
Dependence on paper for much inpatient work
because it always works short term
 Competing IT systems within renal units
 Competing IT systems outwith renal units

Incomplete data
 Inaccurate data
 Lack of comorbidity data
 Dataset omits important aspects of care, e.g

Hospitalisation
 Quality of life
 Patient Reported Outcomes Measures (PROM)
 Nothing yet on AKI

MIND THE GAP! - THE DATA GAP

Dates they saw renal doctor first

Primary Renal Disease

Other conditions (comorbidity)

Incident vascular/PD access

Drug treatment esp ESA/Iron

Use of palliative/conservative care

Date and causes of death

The future
Quality of life
 Patient reported outcomes

COMORBIDITY-BIRMINGHAM STYLE
DECLINE IN COMORBIDITY REPORTING
80.0
16
70.0
Percentage
60.0
50.0
Median percentage amongst
only centers returning
comorbidity
Percentage of patients with
co-morbid data
40.0
30.0
20.0
10.0
0.0
2003
2004
2005
2006
Year
2007
2008
30
20
Liv Ain
M Hope
Clwyd
Liv RI
Camb
Ipswi
Antrim
Donc
Ulster
Cardff
Middlbr
Carsh
Bangor
Kent
Chelms
Nottm
Belfast
Sthend
Wolve
Dudley
Newry
L Barts
Redng
L West
Covnt
Airdrie
Basldn
Plymth
Shrew
L Kings
Stoke
Sund
Tyrone
L Guys
Wrexm
B Heart
Edinb
Stevng
Newc
Derby
Sheff
Dorset
Bradfd
Ports
Oxford
L St.G
B QEH
Carlis
Dunfn
Swanse
D&Gall
Glasgw
Norwch
Brightn
Prestn
Glouc
Hull
Leic
Abrdn
Bristol
York
Inverns
Wirral
Dundee
Leeds
M RI
Klmarnk
Truro
Exeter
L Rfree
Colchr
England
N Ireland
Scotland
Wales
UK
Percentage of patients
LEARNING FROM OTHERS ON THE DATA ELEMENTSPRD AS EXAMPLE
Figure 3.9: Proportion of patients with primary renal diseases by centre
‘Other’=all other PRD categories, including: PKD, Pyelonephritis, HTN, RVD and Other
100
90
80
70
60
50
40
'Other'
GN
DM
Uncert
Missing
10
0
Centre
Primary renal disease
UK Renal Registry 12th Annual Report
ALL PRIMARY DISEASES
MISSING?? REALLY
UK Renal Registry 12th Annual Report
with primary renal diseases by centre
ng: PKD, Pyelonephritis, HTN, RVD and Other
Centre
B Heart
Edinb
Stevng
Newc
Derby
Sheff
Dorset
Bradfd
Ports
Oxford
L St.G
B QEH
Carlis
Dunfn
Swanse
D&Gall
Glasgw
Norwch
Brightn
Prestn
Glouc
Hull
Leic
Abrdn
Bristol
York
Inverns
Wirral
Dundee
Leeds
M RI
Klmarnk
Truro
Exeter
L Rfree
Colchr
England
N Ireland
Scotland
Wales
UK
Percentage
of patients
ALL PRIMARY DISEASES
UNCERTAIN
?? REALLY
100
90
80
70
60
50
40
30
20
10
0
'Other'
GN
DM
Uncert
Missing
UK Renal Registry 12th Annual Report
Figure 3.9: Proportion of patie
‘Other’=all other PRD categories, incl
Liv Ain
M Hope
Clwyd
Liv RI
Camb
Ipswi
Antrim
Donc
Ulster
Cardff
Middlbr
Carsh
Bangor
Kent
Chelms
Nottm
Belfast
Sthend
Wolve
Dudley
Newry
L Barts
Redng
L West
Covnt
Airdrie
Basldn
Plymth
Shrew
L Kings
Stoke
Sund
Tyrone
14,000 PATIENTS/FAMILY/STAFF REGISTERED WITH
WWW.RENALPATIENTVIEW.ORG
THE FUTURE FOR THE UKRR
Keep doing what we do but do it better
 Increased sharing with other National Clinical
Audits, Hospital Episodes Statistics, other
registries
 More hard outcomes required
 ?Leave laboratory data audit at local level
 Develop better data management
 Renal Patient View
 Rare Diseases (RADAR)
 Other projects

Registry Committee
Study groups
I’M A BUSY CD –WHAT’S THE TAKE-HOME MESSAGE
Report is coming but late
 Remember the IT challenges
for you and us
 Aim for one major system with
linkages to others

Ye must
return
data to us
@UKRR



Transplant
POET
ADEQUEST
Increased use by staff
 Dedicated system manager
 Trained (resourced) Renal Unit
23
staff at all levels

THE FUTURE FOR THE UNITS SENDING
DATA TO THE REGISTRY
 Keep
solvent
 Recognise that collecting data informs you
and allows you to challenge
commissioners
 Invest in IT & know the IT staff
 Linkage with other systems that increase
the benefits & usage of the renal IT
 Talk to us more and vice versa
Thank you for all your hard work
supplying the data
[email protected]
[email protected]
[email protected]
Telephone:0117 323 5665
www.renalreg.com