Adult BMT Service – Freeman , – CIC 276

The Newcastle experience and the benefits of a clinical database on the role of the BMT data manager

Newcastle Upon Tyne NHS Foundation Trust Adult BMT Unit, Northern Centre for Cancer Care, Freeman Hospital

Paediatric BMT Unit, Great North Children’s Hospital, • Adult BMT Unit • Haematology and oncology inpatients • Teenage Cancer Trust TYA Unit • Radiotherapy Services • Sir Bobby Robson Clinical Trials Centre • Renal inpatients and Dialysis

Services at Freeman: • Institute of Transplantation – BMT day unit, x2 apheresis machines and x2 ECP machines since April 2016 • Cardiothoracic centre – heart and lung transplantation (including children) • HpB – surgery for tumours and transplantation • Urology - surgery for tumours and transplantation • Bone tumour Service • ENT • Paediatric BMT Unit • Paediatric Oncology inpatients, Children’s Cancer Ward • All children’s services on one site

Services at RVI: • Regional Neurosurgical centre • A+E and Regional trauma unit • Plastics, dermatology and ophthalmology centre • Gynaecology • Breast services • Respiratory services • Medical School – Haematology research group and lab

• NHSBT and (fertility services and cytogenetics lab) Adult BMT activity - Newcastle - CIC 276 100

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0 2010 2011 2012 2013 2014 2015 2016 2017 Where we were in Sept 2015

• No DM for 4 months – back log of Med-A submissions • Multiple spreadsheets recording similar data, errors • CQUIN submission was very time consuming, confusing interpretation of measures, not consistent approach for submissions • Paper submissions to BSBMT • No access to ProMISE • Separate BMT pre transplant planning diary • Really difficult to prepare reports and lists of patients for clinical audits/projects • Paper based GvHD data collection Solution - BMT Clinical Database

• Developed by Dr Clare Lendrem, Human Dendritic Cell lab, Newcastle University Medical School • Developed to assist haematology research staff at Newcastle University with real time GvHD data collection • Support the work of the Adult BMT data manager to collate all data in one location avoiding duplication • Funding grant from Bright Red (regional haematology charity, supporting patient care and research)

• Complete BMT activity from Jan 2007 onwards imported at ‘go-live’ – individual transplants can also be entered prior to this date

Post-meeting notes: Not yet linked to trust appointment system; could produce a MedA print out but we currently write out; not CE marked – but calculates GvHD fields; not linked to ProMISE - technically could but not supported yet BMT Clinical Database Easy to search for a patient alphabetically by surname or Hospital number or ProMISE ID Ability to exclude from reports

Freetext boxes are invaluable Grade updates as stages are completed

Updated as each Med-A form is submitted, reports produced – Outstanding day 0 Outstanding day 100 Monthly follow ups Extracting the data is equally important

Adult BMT activity - Newcastle - CIC 276 100 90 80 70 60 50 Auto 40 Allo 30 20 10 0 2010 2011 2012 2013 2014 2015 2016 2017 Standard format, data instantly available with any date range. Viewable/print/email attachment as PDF Custom Queries – very helpful for research/audit purposes + data quality checks.

Join tables then select fields and criteria to include/exclude

Autos 2010-2015 Diagnosis Protocol Postcode Age at transplant Survival status

More complex reports - Add a third table ie aGvHD summary Where we are now

• All data is entered once into clinical database - user friendly and straight forward to use • Data for CQUIN submission is produced instantly – consistent approach in definition of the measures • Access to ProMISE and direct submissions of Med-A’s • Incorporation of BMT pre transplant planning diary into database – ability to use without this function if not required • Easy to analyse data and produce patient lists for audit, annual report activity • Standardised reports available to clinical staff in DM absence • Real time GvHD assessments updated live in clinic • DM support for Haemoglobinopathy service and adhoc support to the Haemophilia service BMT Clinical Database

• Constructed in Microsoft Access • DM requires full version of Access (update drop down lists and run queries) • Other clinical staff only require Access Runtime • Ability to replace or add new fields if have technical skills/knowledge • Main menu uses tabs – some only available e.g. if patient has allo transplant • Data manager has separate menu • Prepare CQUIN submission (all measures except three) • Support Med A submission records • Annual follow up report based on month of transplant • Has several built-in reports • Can be updated to replace or add new fields if have technical skills/knowledge Demonstration of the database Plans for the future

• Database will be encrypted with user log-in to prevent unauthorised access • Allow different levels of user access (read only, full access) • Dashboard is being constructed using the data tables to provide easy, instant, flexible summaries of the data • Support for ECP activity • Further Med-A data fields to be included