Database and Data Update Dr Rob Hollingsworth Mark Foster Award Winners UK IT Industry Awards – UK Public Sector Project of the Year E-Health Insider Awards – Excellence in Major Healthcare IT Development

Thank you for your support of the database!

Database Steering Group Malcolm Qualie – NHS England Mandy Matthews – NHS England Carrock Sewell – Consultant Immunologist John Grainger – Consultant Haematologist Mike Lunn – Consultant Neurologist Richard Herriot – Consultant Immunologist Peter Mullholland - Pharmacist Karen Topping – Pharmacist Retired Denise O’Shaughnessy – Consultant Haematologist Alison Jones – Consultant Immunologist (Paediatric) Jennie Wimperis – Consultant Haematologist Thank you to previous members of the steering group, especially Denise

Database Status Update Almost 60,000 patients registered with 71,000 treatment episodes Multiple specialities and 130+ conditions Over 750,000 separate infusion entries 160 Trust’s submitting data (England, Scotland and Northern Ireland) Over 25 million grams of immunoglobulin recorded 1,000 Active database users

Increasing Annual Usage of Immunoglobulin Usage (g) Spend on Immunoglobulin is approx. £165 million per annum, rising at over 10% per annum

Top 10 Diagnostic Conditions (Usage) Top 20 Conditions (usage)

Top 20 Trusts (Usage)

Services provided by the database Management of product shortages Support for Ig procurement and monitoring Safety and recall management Prescribing audit Commissioning support Information for guidelines and efficacy/clinical review BPL supply Vigam Roche new product ITP Crosschecking invoices Capturing and evaluating outcomes

Patient Follow-ups Short-term treatment episodes Require a follow-up to be entered at the end of the treatment episode Long-term treatment episodes Require a follow-up to be entered annually Data required for follow-up entry Date of follow-up*, Treatment State, GP Notified of review / follow-up*, Follow-up Outcome*, Improvement?*, Next follow-up Date, Comments

Outcomes Suggested outcomes for specific conditions (guidelines) Ability to search and select previously used outcome measures for a condition Ability to quickly and easily enter multiple outcome values Work underway to refine the list of outcome measures held on the database Data Required Date*, Efficacy Measure*, Value* Frequency of entry Baseline and at review

Immunoglobulin Database Version Releases Recent Releases Ability to exclude patients from dashboards inc. private patients Flag fields relevant to dashboards including guidance Updated dashboard measures Reports to highlight excluded patients with direct link to exclusion screen Update dashboard guide Enable deletion / editing of dosage entries Enable quick entry of a dosage review where there is no dose change Removed question about dosage change Ability to continue editing or adding to completed treatment episodes Highlight completed treatment episodes when searching Add to options to specify patient as an overseas patient or other In follow-up add option in treatment status for “Treatment not started” Header now includes indication colour and long/short term indicator

Immunoglobulin Database Version Releases Version 5.5 Pilot Export data for local analysis (patients, episodes, infusions, outcomes and follow-up) Hide inactive treatment episodes when searching Provide summary at follow-up of key data Allow historical entry of specific data items e.g. weight / height Removal of dosage entry section

Patient home therapy monitoring - Haemtrack Database Updates Roadmap Ongoing dashboard and reporting improvements Rationalisation of outcome measures and ‘other’ diagnoses Definition and adoption of outcome measures for conditions JAC and ASCRIBE automated infusion import Data clean-up Patient home therapy monitoring - Haemtrack

HAEMTRACK Current Status 922,000+ Treatment Entries Recorded Currently 18,000+ Treatment Entries per Month 2,800+ Patients 51 Haemophilia Centres Global expansion (USA, China, Spain etc.)

Patient Home Therapy Information System Haemtrack Patient Home Therapy Information System Successfully universally adopted for the Haemophilia service Over 920,000 treatments entered by patients Allows clinicians to review in real-time patient home therapy entries Support for mobile devices Integrated to the Immunoglobulin Database for PID

End to End Encryption for Secure Consultations Encrypted Reporting Simple to use Browser restriction End to End Encryption for Secure Consultations Quick and Easy to Use for Video Consultations CLIVE - clive.mdsas.com Flexible Reporting for Consultation Management For Further Information – info@mdsas.com MDSAS - www.mdsas.com

Public website (www.igd.nhs.uk) Patient Information Leaflets

Automated Data Uploads JAC Ascribe Progress with ASCRIBE automated infusion upload In the last year: 27 Hospitals using the spreadsheet infusion upload 9 Hospitals currently using the follow-up upload 19 Hospitals currently using the Ig request upload

Conclusion The database and the work of Trusts to provide information to it, continues to be crucial to successfully manage the many challenges of Immunoglobulin therapy