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’

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

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

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!

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 support@mdsas.com

NHR Active Registrations Status 11881 NHR Active Registrations During the year 65 patients were recorded as no longer active at a centre

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

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

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

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)

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

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

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

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

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

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)

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

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

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

AR Completion (Active) Status 2015-16 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%

AR Completion (Active) Annual Review 2016-17 (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%

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

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

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

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

NHR NHR Data Review