1. National Haemglobinopathy Registry Manchester UK Forum Meeting
Dr Rob Hollingsworth
UK IT Industry Awards – Medalists ‘UK Public Sector Project of the Year’
E-Health Insider Awards – Winner ‘Excellence in Major Healthcare IT Development’

2. Agenda
Overview of NHR
Data Summary
Adverse Events Review
System Demonstration
Q&A

3. Thank you for your support of the NHR!
NHR and Information
Thank you for your support of the NHR!

4. New members joining shortly!
NHR Steering Group
Jo Howard - Consultant Haematologist
Cathy Coppinger - Screening Programme
Mary Petrou - UK Thalassaemia Society Representative
Sara Trompeter - Consultant Haematologist
John James - Sickle Cell Society
Anne Yardumian - Consultant Haematologist
Clare Foreman - Commissioner
Rob Hollingsworth - MDSAS
New members joining shortly!

5. NHR
NHR is a registry for all Sickle & Thalassaemia patients in England with central data collection through a national IT network connected to all Haemoglobinopathy centres

6. NHR Active Registrations
Status
11881
NHR Active Registrations
During the year 65 patients were recorded as no longer active at a centre

7. Sickle Thal Other Total
Centre
Sickle
Thal
Other
Total
Kings College Hospital
1,037 23 9
1,069
Guy's and St Thomas
980 7 37
1,024
Newham University Hospital
674 25
706
North Middlesex
579 38 17
634
Royal London
542 33 14
589
Queens Hospital (BHR)
485 30 22
537
The Whittington Hospital NHS Trust
286
142
435
University College London Hospitals
258
127 48
433
Manchester Childrens Hospital
290 60 77
427
Birmingham Children's
256
122
408
Birmingham - City Hospital
301 39 43
383
Homerton Hospital
358 8
380
North West London Hospitals NHS Trust (Central Middlesex Hospital)
335 26
375
Queen Elizabeth Hospital, Woolwich
342 4
350
Manchester Royal Infirmary
265
336
Imperial College Healthcare NHS Trust (Hammersmith Hosptial)
280 10
313
Croydon Health Services NHS Trust
288 2 11
Lewisham Healthcare NHS Trust
246 1
255
St Georges Healthcare NHS Trust, London
229 12
248
Imperial College Healthcare Trust (St Mary's)
147 34
191
Coventry University Hospital
156 24
182
University Hospitals Leicester
121
166
St James's University Hospital, Leeds
132 29
165
Nottingham University Hospitals
151
Whipps Cross University Hospital
125 3
University Hospitals Bristol NHS Trust 98 16
118
Luton and Dunstable Hospital 92 20
112
Sheffield Teaching Hospitals 79
103
Milton Keynes Hospital 99
102

8. Sickle Thal Other Total
Centre
Sickle
Thal
Other
Total
Kings College Hospital
1,037 23 9
1,069
Guy's and St Thomas
980 7 37
1,024
Newham University Hospital
674 25
706
North Middlesex
579 38 17
634
Royal London
542 33 14
589
Queens Hospital (BHR)
485 30 22
537
The Whittington Hospital NHS Trust
286
142
435
University College London Hospitals
258
127 48
433
Manchester Childrens Hospital
290 60 77
427
Birmingham Children's
256
122
408
Birmingham - City Hospital
301 39 43
383
Homerton Hospital
358 8
380
North West London Hospitals NHS Trust (Central Middlesex Hospital)
335 26
375
Queen Elizabeth Hospital, Woolwich
342 4
350
Manchester Royal Infirmary
265
336
Imperial College Healthcare NHS Trust (Hammersmith Hosptial)
280 10
313
Croydon Health Services NHS Trust
288 2 11
Lewisham Healthcare NHS Trust
246 1
255
St Georges Healthcare NHS Trust, London
229 12
248
Imperial College Healthcare Trust (St Mary's)
147 34
191
Coventry University Hospital
156 24
182
University Hospitals Leicester
121
166
Bradford 31 47 4 82
Addenbrooke's Hospital Cambridge 72 5 2 79
Darent Valley hospital 76
Sheffield Childrens Hospital 62 12 1 75
St Helier University Hospital Trust
Southampton University Hospital Trust 48 8 61
Royal Liverpool University Hospital 46 3 57
Royal Victoria Infirmary, Newcastle upon Tyne 44 6 53
New Cross Hospital, Wolverhampton 50
Oxford Children's Hospital
Northampton General Hospital 43
Derby 33 7
East and North Herts NHS Trust - Lister and QE2 Hospital 40
Oxford University Hospitals NHS Trust
Medway Maritime hospital Paediatric 32 34
Kettering General Hospital NHS foundation Trust
Alder Hey Childrens Liverpool 26 28
Royal Berkshire NHS Foundation Trust 22
James Cook University Hospital, Middlesbrough 23 27
Wexham Park Hospital 14 18
Hull and East Yorkshire Hospitals NHS Trust 9 15
Gloucestershire Royal Hospital
Princess Royal University Hospital 13
East Lancashire Hospitals nhs Trust
Basildon and Thurrock University Hospital NHS FT
Sickle & Thalassaemia Centre

9. Patients registered at more than one centre now
Validation
Patients registered at more than one centre now
906 (7.8%)
Individual patients should be registered by all centres providing their care

10. Completeness – Service Specification
Completion of the NHR is a requirement of the service specification, backed by commissioners and overseen by the Clinical Reference Group (CRG)

11. NHR Components Patient Registrations Serious Events Annual Review
Patient Card
National Information Service
Public website
Screening Programme
Newborn Outcomes Project

12. NHR Information Service
NHS Network
NHR Server
Trusts
Data Entry
System
NHR
Database
Information Service
Trusts DH
Commissioners
Public
NHR
Website

13. NHR Card
Do we need any changes to the card?
Patient Card

14. NHS BT Interface between Haematos and the NHR
Data Extraction to populate NHR with Blood Genotype

15. NHS Digital Establish death details including date and cause
Section 251 Application for Release of Death Data
Establish death details including date and cause
NHR
NHS Digital
Patient Demographics
Death Details

16. Screening Programme
NHR supplies data to support the Newborn Outcomes Project
Number of newborns registered at a treatment centre within 1 year
Patient Registration (<1yr old)

17. Newborn Outcomes Project
Proposal developed to utilise NHR for future management of project
Electronic Referral of screen positive patients to Treatment Centres
Fully electronic management of process
Access through existing NHR for Treatment Centres
Reduces duplication of effort, utilises existing NHR, long-term follow-up through NHR

18. NHR Annual Review is live for 2016-17
Dashboard measure 05
Adequate data entry each year into annual review system of NHR

19. Annual Review
Essential to maintain an accurate and up to date registry
Good practice –UCLH, Guys, Kings, Homerton, Leicester etc.
Continually updated in response to feedback
Open to suggestions to improve ease of entry

20. AR Completion (Active)
Status
Centre
Registered Patients
Active Patients
Pat AR Started
Pat AR Signed Off
AR Completion (Active)
University College London Hospitals
492
466
404
86.70%
Derby 46 38 32
84.21%
Nottingham University Hospitals
185
172
142
82.56%
Northampton General Hospital 59 51
74.51%
University Hospitals Leicester
204
192
140
72.92%
Homerton Hospital
389
361
260
252
69.81%
Kettering General Hospital NHS foundation Trust 42 36 25
69.44%
The Whittington Hospital NHS Trust
453
441
300
296
67.12%
Oxford University Hospitals NHS Trust 33
65.79%
Guy's and St Thomas
1133
1005
704
658
65.47%
James Cook University Hospital, Middlesbrough 37 35 20
57.14%
East Lancashire Hospitals nhs Trust 9 6 5
55.56%
New Cross Hospital, Wolverhampton 50 30
50.00%
Royal Victoria Infirmary, Newcastle upon Tyne 66 62 29
46.77%
Addenbrooke's Hospital Cambridge 88 87
37.93%
Coventry University Hospital
207
195 79 73
37.44%
Imperial College Healthcare Trust (St Mary's)
242
209 74
35.41%
Royal Liverpool University Hospital 70 24 22
31.43%
Kings College Hospital
1143
1086
485
222
20.44%
Croydon Health Services NHS Trust
303
17.00%
Manchester Childrens Hospital
469
449 81 64
14.25%
Bradford 84 77 8
10.39%
Milton Keynes Hospital
104 97
9.28%
Queens Hospital (BHR)
539 31
5.57%
Newham University Hospital
707 17
2.40%
Manchester Royal Infirmary
376
352
135
2.27%
Imperial College Healthcare NHS Trust
335
328
145
1.52%
Sheffield Teaching Hospitals
119
118 26 1
0.85%
Birmingham Children's
522
508 4
0.79%
Royal London
590
0.68%

21. AR Completion (Active)
Annual Review (as of 1st November 2016)
Centre
Registered Patients
Active Patients
Pat AR Started
Pat AR Signed Off
AR Completion (Active)
Wexham Park Hospital 18
100.00%
Homerton Hospital
383
355
242
68.17%
Oxford University Hospitals NHS Trust 42 38 14
36.84%
Guy's and St Thomas
1128
1001
455
367
36.66%
Nottingham University Hospitals
185
175 65 47
26.86%
Addenbrooke's Hospital Cambridge 87 86 22
25.58%
University Hospitals Leicester
203
192 59 46
23.96%
University College London Hospitals
492
466
18.67%
Sheffield Teaching Hospitals
119
118 24
18.64%
Milton Keynes Hospital
104 97 16
16.49%
Royal Victoria Infirmary, Newcastle upon Tyne 61 8
13.11%
Manchester Childrens Hospital
446 53
10.54%
Coventry University Hospital
205
193 39 19
9.84%
Northampton General Hospital 55 6 4
8.51%
Derby 3
7.89%
New Cross Hospital, Wolverhampton 50
6.00%
Kings College Hospital
1135
1078
266
5.66%
Royal Liverpool University Hospital 73 69
4.35%
The Whittington Hospital NHS Trust
453
441 25
4.08%
Croydon Health Services NHS Trust
300
297 9
3.03%
Kettering General Hospital NHS foundation Trust 36 1
2.78%
Bradford 84 77
1.30%
Manchester Royal Infirmary
370
348 23
1.15%
North Middlesex
654
645 29
0.16%

22. Annual Review 2016-17 (as of 1st November 2016)

23. Patient Home Diary System
Haemtrack
Patient Home Diary System
1 million treatments entered by patients
Allows clinicians to review in real-time patient home diary entries
Clinician dashboard alerts for key data
Mobile Apps for iPhone and Android
Support for all products with ability to scan product entries

25. Video Consultation Simple, quick and easy to manage
Login  Enter participant  Start consultation

26. NHR – improving patient care
Outcome data to inform decisions on patient care
Clinical management of patients
Research
Assist the blood transfusion service in ensuring availability of blood
Supporting the screening programme ensuring correct care provided

27. NHR
NHR Data Review