Improving the Transplant Information Pathway Alex Hudson Head of Information Services

1. Improving the Transplant Information Pathway Alex HudsonHead of Information Services

2. 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 transplants happenElective Patient RegistrationNLDKSS Administration Ensure patient safetyScientific SupportTransplant Follow-upLiving Donor Follow-up Statutory obligationsHuman Tissue ActPatient Information Consent

3. Our Services Elective Transplant List Management Living DonorSharing SchemeAdministration Scientific Support ODT OnlineManagement Operational HTA Compliance Patient InformationConsent Scheme Statutory Obligations RetrievalInformation Living DonorHealth Outcomes TransplantRecord Transplant Follow-up Information Processing

4. Information ServicesInformation Pathway Activity

5. Elective Patient Registrations Active Suspended Patients listedfor transplant 7000 3000 Newly listed Amendments Registrationactivity per annum 4500 12500 • 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 Registration Request made via ODT Online Registration validatedby Information Services Commit to National Transplant List

6. Donor Information PathwayAnnual activity Retrieval Accepting centre HTA-A Donor Information ~3500 HTA-B & Organ Damage~5400 RecipientCoordinators RetrievalTeam Retrieval Team Information~2300 Organ Retrieval Information~1800 Donor Forms~ 13,900 SNOD DCD ProceedingNon Proceeding~900

7. Transplant Information PathwayAnnual activity Transplant Record Short-termFollow-up Long-Term Follow-up Kidney~3000 per year Kidney~36000 per year Liver~900 per year Liver~9100 per year Cardiothoracic ~400 per year Cardiothoracic ~4100 per year Transplant Record~ 9,000 Follow-up forms~ 63,000 Pancreas/Islet ~250 per year Pancreas/Islet ~1700 per year Ocular~3600 per year Ocular~9000 per year Living Donor~1000 per year Living Donor~3200 per year

8. 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

9. Sustainability • 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

10. Data Collection Methods Data Transfer Comment Strategy Paper • Multiple data entry • Subject to potential transcription errors • Slow & costly data processing Decrease relianceon paper forms ODT Online • Disconnected from hospital systems • Most suitable for “new events” • Facilitates validation at source Preferred optionpatient & live donor reg’n ModernE-Data TransferSystems • Gold standard for “hospital system data” • Implementation resource intensive • Must be supported to facilitate change Preferred optionfor transplant information pathway

11. PaperData Collectors PaperSelf-returns Electronic transfer ODT Online Data Collection Methods

12. PaperData Collectors PaperSelf-returns Electronic transfer ODT Online Data Collection: In 3 years? Use ODT Online only DRT Phase II Electronic / ODT Online ODT Online ODT Online

13. ODT Strategic Support (1) TOT2020: Outcome 4 Better 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

14. ODT Strategic Support (2) Living Donor Strategy: Action 3 NHSBT, 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

15. 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 e-Paper Forms Where appropriate, implement ‘e-Paper Forms’ Information ServicesStrategic Objectives

16. 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 Adult Kidney Transplant list (1 April 2014) Kidney transplant centre

17. 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!

18. Expanding ODT Online • Secure multi-purpose web-based application (~ 500 ODT Online users) Full transplant list validation & management View due and overdue form returns report Access/download centre:- Registration data- Follow-up data Complete & return forms via the application

19. Expanding ODT Online • Extend ODT Online to include all Transplant Information Pathway Forms To be added Currently available Living Donor RegistrationTransplant RecordPancreasPancreatic IsletOcularFollow-upPancreas OcularLiving donor follow-up Elective RegistrationTransplant recordKidneyLiverCardiothoracicIntestinalFollow-upKidneyLiverCardiothoracicIntestinal

20. Electronic File Transfer Common statement “NHSBT must make electronic data capture possible”Current situation “It is possible to send data electronically to NHSBT”Some9000 kidney follow-up forms are returned via electronic data transferThe 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)

21. 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 No postage or scanning required Some ‘on form’ validation possible Copy can be saved directly to local devise Link to automatically open e-mail, attach and send document • Due to pilot this approach for the Retrieval Team Information Form

22. Summary • 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.ukkathy.edwards@nhsbt.nhs.uk