improving the transplant information pathway alex hudson head of information services
TRANSCRIPT
ODT - Information Services
Mission Statement
To retrieve and provide information efficiently and effectively from and to those in the wider donation and transplant community to make transplants happen, ensure
patient safety and fulfil our statutory obligations
Make transplantshappen
Elective Patient RegistrationNLDKSS Administration
Ensure patient safety
Scientific SupportTransplant Follow-up
Living Donor Follow-up
Statutory obligations
Human Tissue ActPatient Information Consent
Patient InformationConsent Scheme
Living DonorSharing SchemeAdministration
Elective Transplant List Management
Transplant Follow-up
TransplantRecord
Op
eration
alS
tatuto
ry O
blig
ation
sIn
form
ation
P
rocessin
g
ODT OnlineManagement
Scientific Support
HTA Compliance
Living DonorHealth Outcomes
RetrievalInformation
Our Services
Elective Patient Registrations
7000 3000
Active SuspendedPatients listedfor transplant
• Information Services are responsible for the elective patients registrations- Urgent registrations processed by the Duty Office (24/7 service)
• Elective registration ‘requests’ are made via ODT Online (web-based facility)
• ODT Online used to record transplant outcomes 24/7 (e.g. suspend, remove, death)
• Elective patients can only be activated during standard office hours
RegistrationRequest made via
ODT Online
Registration validatedby Information Services
Commit to National Transplant List
Registrationactivity per annum
4500 12500
Newly listed Amendments
Donor Information PathwayAnnual activity
HTA-ADonor Information
~3500HTA-B &
Organ Damage~5400
Organ Retrieval Information
~1800
DCD ProceedingNon Proceeding
~900
Retrieval Accepting centre
Donor Forms~ 13,900
Retrieval TeamInformation
~2300
RetrievalTeam
SNOD
RecipientCoordinators
Transplant Information PathwayAnnual activity
TransplantRecord
Short-termFollow-up
Long-Term Follow-up
Kidney~3000 per year
Liver~900 per year
Cardiothoracic ~400 per year
Ocular~3600 per year
Kidney~36000 per year
Liver~9100 per year
Cardiothoracic ~4100 per year
Ocular~9000 per year
Living Donor~3200 per year
Pancreas/Islet ~250 per year
Pancreas/Islet ~1700 per year
Transplant Record~ 9,000
Follow-up forms~ 63,000
Living Donor~1000 per year
Transplant Information Pathway
• Provides essential information to allow NHSBT to monitor patient and graft outcomes following all types of solid organ and ocular transplantation.
• These data facilitate:Performance monitoring (patient safety & return on investment)Service improvement (improved efficiencies & outcomes)Development of national organ allocation (improved equity & outcomes)
• Throughout the UK, these data are submitted by:~ 30 individual solid organ transplant centres ~ 150 ocular transplant centres ~ 90 dialysis centres (inclusive of transplant centres)
• Follow-up data is requested at regular intervals post-transplant typically; - At three months (short term)- At one-year and annually thereafter (longer term)- Ocular & living donor follow-up collected at one, two and five years
• In the current era, some 63,000 follow-up forms are returned each year
• Over recent years we have seen significant increases in:- solid organ donors (63% increase in 6 years) - solid organ transplants performed (~40% increase in 6 years)- small but important improvements in post-transplant survival
• These results have resulted in an increase in the number of recipients“living with a functioning graft” over the last 6 years (38%), 13 years (103%)
• The number of follow-up forms returned is increasing exponentially
• Forecasts project an imposing 74,000 forms due per annum by the year 2020
• Under current arrangements, follow-up data collection is expected to become unsustainable in terms of both resource and processing costs
Sustainability
Data Collection Methods
Paper
ODT Online
ModernE-Data Transfer
Systems
Data Transfer
Decrease relianceon paper forms
Preferred optionpatient & live donor reg’n
Preferred optionfor transplant
information pathway
Strategy
• Multiple data entry• Subject to potential transcription errors• Slow & costly data processing
• Disconnected from hospital systems• Most suitable for “new events”• Facilitates validation at source
• Gold standard for “hospital system data”• Implementation resource intensive• Must be supported to facilitate change
Comment
Data Collection Methods
40
3
100
100
30
85
100
100
100
100
100
15
11
95
15
5
0% 20% 40% 60% 80% 100%
Living Donor FUP
Living Donor Record
Annual FUP
Tx Record
RTI
ORI
DCD Donor
HTA-B
HTA-A
Registration
Method of form return (%)
PaperData Collectors
PaperSelf-returns
ODT OnlineElectronic transfer
Data Collection: In 3 years?
35
10
10
85
100
100
100
65
90
15
15
100
75
100
100
0% 20% 40% 60% 80% 100%
Living Donor FUP
Living Donor Record
Annual FUP
Tx Record
RTI
ORI
DCD Donor
HTA-B
HTA-A
Registration
Method of form return (%)
PaperData Collectors
PaperSelf-returns
ODT OnlineElectronic transfer
ODT Online
ODT Online
DRT Phase II
Electronic / ODT Online
Use ODT Online only
ODT Strategic Support (1)
TOT2020: Outcome 4Better support systems and processes will be in place to enable more donations and transplant operations to happen.
• Current systems developed over time not all designed for the purposes they now serve
• Existing systems unresponsive to changeRisk of errors in tightly-linked systems
• Current cost of operations are increasingNew systems and processes can reduce this
• TOT2020 strategy recognised that improved infrastructure is required to sustain on going increases in donation and transplantation
ODT Strategic Support (2)
Living Donor Strategy: Action 3NHSBT, clinicians, commissioners and other authorities will ensure that outcomes of LDKT are monitored and that information is accurately interpreted and utilised to support state of the art donor and recipient care by:
• Establish consistent reporting systems and governance structures to monitor donor and recipient health outcomes and experiences
• Participating in and accurately interpreting emerging research to inform the UK-wide programme
• Develop responsive and timely electronic reporting to maximise patient benefit through accurate collection and interpretation of data to and from NHSBT
Registration
Consolidate patient registrations to a single platform (ODT Online)
ODT Online
Extend ODT Online to include all transplant information pathway forms
Electronic file transfer
Encourage take-up of electronic file transfer where appropriate
Information ServicesStrategic Objectives
e-Paper Forms
Where appropriate, implement ‘e-Paper Forms’
Consolidate Patient Registration• Currently two methods of registering patients for transplantation • 18 kidney centres use ODT Online, 6 centres use NTN• ODT Online is used by all cardiothoracic, liver, intestinal & islet centres
Kidney transplant centre
Adu
lt K
idn
ey T
rans
plan
t lis
t (1
Ap
ril 2
014)
0
100
200
300
400
500
600
700
800
900
Ma
nch
est
er
Bir
min
gh
am
WL
RT
C
Gu
y's
Le
ice
ste
r
Gla
sgo
w
Le
ed
s
Th
e R
oya
l Fre
e
Th
e R
oya
l Lo
nd
on
St G
eo
rge
’s
Bri
sto
l
Oxf
ord
Liv
erp
oo
l
Po
rtsm
ou
th
Sh
effi
eld
Ca
mb
rid
ge
Ne
wca
stle
Ed
inb
urg
h
Ca
rdiff
Be
lfast
Co
ven
try
No
ttin
gh
am
Ply
mo
uth
Suspended
Active
Benefit of ConsolidationRe-defining waiting time
• Renal community expressed interest in re-defining waiting time:
From: Date first actively listed to date of transplant
To: Dialysis start date to date of transplant
• ODT Online allows centres to record date of dialysis, NTN does not
• If all centres registered patients via ODT Online the definition could be changed without the need for risky workarounds
• Standardised transplant listing methodology brings many advantages
• In an effort to facilitate different requirements, we often please no one!
Expanding ODT Online
• Secure multi-purpose web-based application (~ 500 ODT Online users)
Access/download centre:- Registration data- Follow-up data
View due and overdue form returns report
Full transplant list validation & management
Complete & return forms via the application
Expanding ODT Online
Elective Registration
Transplant recordKidneyLiverCardiothoracicIntestinal
Follow-upKidneyLiverCardiothoracicIntestinal
Living Donor Registration Transplant RecordPancreasPancreatic IsletOcular
Follow-upPancreas Ocular
Living donor follow-up
• Extend ODT Online to include all Transplant Information Pathway Forms
Currently available To be added
Electronic File TransferCommon statement “NHSBT must make electronic data capture possible”Current situation “It is possible to send data electronically to NHSBT”
Some 9000 kidney follow-up forms are returned via electronic data transfer
The responsibility of both the provider (hospitals) and the receiver (NHSBT)
UK TransplantRegistry
Currently support two file types:- XML (Preferred option due to flexibility)- CSV (Plan to move away from CSV)
e-FORMS• Paper forms can be useful but even ‘paper forms’ can be electronic• Useful method of streamlining audit processes without complex IT projects
Completed via local Laptop, Desktop or (some) smart devises
Link to automatically open e-mail, attach and send document
Some ‘on form’ validation possible
No postage or scanning required
Copy can be saved directly to local devise
• Due to pilot this approach for the Retrieval Team Information Form
• Under current arrangements, follow-up data collection is expected to become unsustainable in terms of both resource and processing costs
• Improving the Transplant Information Pathway is on the agenda and essential if we are to move towards a sustainable future for information capture
• Success is dependent on collaboration and a shared purpose between NHSBT and Hospitals (local Hospital IT is as important as NHSBT IT)
• NHSBT need to be more proactive in working with centres to improve the way in which we send, receive and process information
• Some tough decisions are required that may not suit everyone:- Consolidate Patient Registrations to a single platform (ODT Online)- Encouraging centres to invest in providing local IT extractions
• Keen to talk to all centres wishing to transition to electronic data transfer or adopt ODT Online [email protected] [email protected]
Summary