Improving the Transplant Information Pathway

Alex HudsonHead of Information Services

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

Information Services

Information Pathway Activity

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 alex.hudson@nhsbt.nhs.uk kathy.edwards@nhsbt.nhs.uk

Summary