Improving the Transplant Information Pathway Alex Hudson Head 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 transplants happen Elective Patient Registration NLDKSS Administration Ensure patient safety Scientific Support Transplant Follow-up Living Donor Follow-up Statutory obligations Human Tissue Act Patient Information Consent

Patient Information Consent Scheme Living Donor Sharing Scheme Administration Elective Transplant List Management Transplant Follow-up Transplant Record Operational Statutory Obligations Information Processing ODT Online Management Scientific Support HTA Compliance Living Donor Health Outcomes Retrieval Information Our Services

Information Services Information Pathway Activity

Elective Patient Registrations ActiveSuspended Patients listed for 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 Registration Request made via ODT Online Registration validated by Information Services Commit to National Transplant List Registration activity per annum Newly listedAmendments

Donor Information Pathway Annual activity HTA-A Donor Information ~3500 HTA-B & Organ Damage ~5400 Organ Retrieval Information ~1800 DCD Proceeding Non Proceeding ~900 RetrievalAccepting centre Donor Forms ~ 13,900 Retrieval Team Information ~2300 Retrieval Team SNOD Recipient Coordinators

Transplant Information Pathway Annual activity Transplant Record Short-term Follow-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 Modern E-Data Transfer Systems Data Transfer Decrease reliance on paper forms Preferred option patient & live donor reg’n Preferred option for 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 Paper Data Collectors Paper Self-returns ODT Online Electronic transfer

Data Collection: In 3 years? Paper Data Collectors Paper Self-returns ODT Online Electronic transfer ODT Online DRT Phase II Electronic / ODT Online Use ODT Online only

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 change Risk of errors in tightly-linked systems Current cost of operations are increasing New 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 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

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 Services Strategic 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 Adult Kidney Transplant list (1 April 2014)

Benefit of Consolidation Re-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 record Kidney Liver Cardiothoracic Intestinal Follow-up Kidney Liver Cardiothoracic Intestinal Living Donor Registration Transplant Record Pancreas Pancreatic Islet Ocular Follow-up Pancreas Ocular Living donor follow-up Extend ODT Online to include all Transplant Information Pathway Forms Currently available To be added

Electronic File Transfer Common 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 Transplant Registry 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 , 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 Summary