1. 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

2. Thank you for your support of the database!

3. 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

4. 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

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

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

7. Top 20 Trusts
(Usage)

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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.)

15. 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

18. 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 –
MDSAS -

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

20. 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

21. 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