Patient summaries in Paediatric Emergencies: Policy, Standards, Prospects: Joint MOCHA - Trillium Workshop at MIE2018

1. 1 Patient summaries in Paediatric Emergencies: Policy, Standards, Prospects Catherine CHRONAKIa,, Michael RIGBYb, Frederic EHRLERc, Rianne OOSTENBRINKd, Simon de LUISIGNANe, Dipak KALRAf, Tarik DERROUGHg a HL7 Foundation, Belgium, b Imperial College London, UK, c University Hospitals of Geneva, Switzerland, d Erasmus Medical Center, The Netherlands, e University of Surrey, UK, fEuropean Institute for Innovation through Health Data, Belgium gEuropean Center for Disease Prevention and Control, Sweden Corresponding Author: Catherine Chronaki euoffice@HL7.org

2. Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 2 Abstract. Patient summaries defined as the minimal set of health information that needs to be conveyed for patient safety in the context of emergency or unplanned care were initially introduced in a European context in the cross-border setting across member states of the European Union. Quite complex and high impact emergency situations involve young children and their parents. Then, shifting to a patient-centric perspective, patient summaries make sense in the hands of active and empowered parents and carers. This workshop builds on the work of the Trillium-II project that aims to scale-up use of patient summaries and the work of the MOCHA project which is analyzing health policies for children in 30 European states. The expected outcome of the workshop is to identify challenges and propose recommendations for further coordinated action where digital health policies interface with standards, with clear objectives, actions and intended benefits.

3. Introduction Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 3 The Trillium-II project (www.trilliumbridge.eu) aims to scale up adoption of International Patient Summary (IPS) standards extending the patient summary concept beyond the cross-border setting addressed by the eHealth Digital Services infrastructure [1], which considers minors out of the initial scope. Trillium-II analyses use the IPS components namely problem, medications, allergies, etc., in digital health communities of practice, facilitating synergies and sharing of experience and knowledge. Situations addressed are refined and move beyond the typical ambulatory case of unplanned visits. The MOCHA project (www.childhealthservicemodels.eu/) addresses the full spectrum of primary care policies for children in the 30 European countries, including looking at the practice of Electronic Health Records and public health system use for children including also digital health. MOCHA has reviewed policies for urgent child care in schools across Europe and compiled use cases simple and complex, from a policy view [2]. Interviews with children and parents provide insights into their expectations, and the MOCHA project is linking with the European Center for Disease Control, regarding that agency’s vision on Immunization Information Systems. MOCHA has ascertained each country’s policies in linking primary care and school health service records and assessed the policy in each country with regard to accessing medical records when a child needs urgent care during the school day. The rights of older children to autonomy in confidentiality and in record access, also under new Data Protection Convention and patient summaries provide illustrative examples. University Hospitals of Geneva are piloting a mobile app to reduce waiting time for pediatric emergencies, prepared before and after the emergency visit. Starting from this example, and examining key use cases identified by MOCHA from a social, technological, and financial perspective linked to the patient summary, will help understand the challenges and the benefits of using patient summaries in daily clinical practice [2-4].

4. Speakers Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 4 Professor Michael Rigby will address the “disparity in national policies on availability of key emergency clinical information in school time” drawing results directly from a MOCHA project survey. Michael is visiting professor and senior research fellow at the Section of Paediatrics in Imperial College London, and Emeritus Professor of Health Information Strategy, School of Public Policy and Professional Practice, Keele University, UK. He is the deputy principal investigator for the Models of Child Health Appraised (MOCHA) Horizon 2020 project. He also member of the IMIA Working Group on Technology Assessment and Quality Development. Catherine Chronaki, institutional member officer on the Board of EFMI, secretary general at the HL7 Foundation, and scientific lead of Trillium-II, will present patient summaries as developed and extended in the Trillium-II project, and introduce the speakers. She will focus on how standards can help build trust in the data and shape expectations on supported functionality. Frédéric Ehrler will present a mobile app, developed by his team at the University Hospital of Geneva, assisting young patients and their families in the management of pediatric emergencies. His presentation aims to inspire the audience to imagine how the patient summaries can support the patient journey and initiate the discussion on how different policies in Europe can be bridged. PhD in Computer science, Frederic is specialist in improving healthcare system efficiency and user experience through innovative IT solutions. He aims to foster the integration of evidence based methodology in the implementation of IT solutions in hospitals. Frederic has a strong experience in user centered design and evaluation of patient centric interventions. He is using a wide range of technology going from gamification to IoT to implement innovative solutions improving the efficiency of the whole healthcare ecosystem.

5. Speakers Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 5 Rianne Oostenbrink will present views on young patients with complex needs i.e., what info should be essential in the patient summary, and what would be the role of parents in managing, maintaining and using them. Moreover, Rianne will discuss how to provide parents essential information they can share as a summary in the perspective of continuing care from discharge from the ED to potential revisit to subsequent caregivers, and how to support parents in reevaluating their child and to decide upon new health contact. Rianne Oostenbrink is pediatrician at the dept. of general pediatrics of the Erasmus MC – Sophia in Rotterdam, The Netherlands and chair of the REPEM European research network pediatric emergency medicine. Professor Simon de Lusignan is a general practitioner, professor of primary care and clinical informatics, head of the department of clinical and experimental medicine at university of Surrey, director of the Royal College of General Practitioners research and surveillance centre, member of the BCS Health and Care executive and the UK national representative to EFMI, and the Publications Officer on the EFMI Board. Simon will address the use of big data, especially routinely collected data to support better clinical care focusing on looking at the data flows between primary and secondary care using exemplar conditions such as asthma and diarrhea. These conditions are used to investigate the interface of primary and secondary care to compare data flows in primary care systems. In addressing the role of patient summaries, Simon will explain how improved data flows may be facilitated by patient summaries and result in better quality data for research and policy development. Tarik Derrough, senior expert in vaccine-preventable diseases, at the European Centre for Disease Prevention and Control (ECDC), leads a project about electronic immunisation registries and will share EU experiences in collecting individual level data on immunisation to better support immunisation services and programme monitoring. The sharing of standardised immunisation data across borders and linkage with other health outcome databases are among areas of interest to be addressed.

6. Expected outcome Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 6 The workshop will be organized as a sequence of brief 5 minute position statements followed by interaction with the audience using sli.do. Then, there will be a second round of discussion and 30 minutes of Q&A and interaction with audience. In the closing, key results of the workshop will be summarized, and next steps will be identified. Questions will aim at capturing insights from the audience and prioritizing a set of topics to be presented in a workshop report which will guide follow- up activities on child health to be organized in the second part of 2018.

7. Dany, 14 “diagnosis of asthma made by his primary care practitioner when he was 5 years old. He has many acute attacks which are triggered by cold weather, pollen and house dust mite as well as viral respiratory tract infections” The PHC team check his inhaler technique and makes sure that his agreed written asthma plan is up to date Daily situation management Life at School School do not always allow for Dany's asthma. Dany had two severe episodes when the ambulance had to be called at school paediatric respiratory specialist suggested some new medications and has also gained the family consent to enter into a clinical trial Receiving the best care Continuity of care In the last two years Dany has attended a variety of Emergency departments Dany wonders how his treatment is going to be managed when he becomes an adult. Growing up The importance of the patient summary for Dany

9. Emergency Records and Children in School Michael Rigby Visiting Professor, Imperial College London Deputy PI, MOCHA Project

10. Models of Child Health Appraised (MOCHA) • Horizon 2020 funded project • Tasked with appraising child health models in 28 EU and 2 EEA countries • 9 Scientific Work Packages • Country Agent to supply data in each country

11. Where is the School Child Tetanus Record? Country School cannot supply school has a health record from which it can share the information school holds a health proforma completed by the parents which it can share school provides the primary care provider’s identity, to enable direct enquiries urgent treatment centres have access to primary care medical records Austria ✓ Bulgaria ✓ Croatia ✓ Cyprus ✓ ✓ Czech Republic ✓ Estonia ✓ Finland ✓ Germany ✓ Greece ✓ Iceland ✓ Italy ✓ Latvia ✓ Lithuania ✓ Netherlands ✓ Norway ✓ Poland ✓ ✓ Portugal ✓ ✓ ✓ ✓ Spain ✓ Sweden ✓ UK ✓ Total numbers 8 6 3 4 4

12. How is Tetanus Status found by Emergency TC? Out of 20 countries 6 - Health record held in school 3 – School holds parental history form 4 – school tells TC of the Primary Care Dr 4 – TC has direct access to data 6 – no ready answer

14. Conclusion • Are we putting our children at unnecessary risk? • Need for emergency data set and data standards

15. Primary Health Care varies Simon de Lusignan Professor of Primary Care & Clinical Informatics University of Surrey Work Package Lead, MOCHA Project Filipa Ferreira, Uy Hoang and Harshana Liyanage

16. There is a variation between & within countries in paediatric primary care Out of 30 countries 11 – GP based systems 5 - Paediatrician based systems 14 - Mixed/combined systems

17. MOCHA International Research Readiness Instrument Compendium of downloaded ananymised case databases

18. Country Agents MOCHA International Research Readiness Instrument Online Repository 160 response from 26 EU countries

19. MOCHA on EMIF catalogue Type of health system No of countries Paediatrician based 5 GP based 11 Combined system 14 http://www.emif-catalogue.eu

20. Two MOCHA indicators pertinent to this case Example graphs of variation in ratio of inhalers and antibiotic use Quality indicator Description S1. Asthma care for children % of asthmatic children between 5-18 years prescribed reliever versus preventer inhalers within the past year S2. Antibiotic stewardship total number of Amoxil prescriptions per year for children under 19 years/ total number of prescriptions for cephalosporins per year for children under 19 years

21. Antibiotic prescribing – International variation 0 5000 10000 15000 20000 25000 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 Numberofprescriptionsforchildrenaged 5-14years Year Italy Amoxycyclin prescribed Cephalosporins prescribed 0 5000 10000 15000 20000 25000 30000 35000 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 Numberofprescriptionsforchildren aged5-18years Year England Amoxycylin prescribed Cephalosporins prescribed

22. Asthma prescribing – year on year & international variation 1.05 1.1 1.15 1.2 1.25 1.3 1.35 1.4 1.45 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 Ratioofasthmapreventerstorelievers Year England Italy

23. Conclusion • There is variation in paediatric care in Europe • The variation is: – Between providers – Over time – Between countries • This variation may affect the care given in this case

24. Reinforcing the Bridges and Scaling up EU/USCooperation on Patient Summary Trillium II This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745

25. eStandards as infrastructure for innovation • Massive health data accumulated in silo EHR systems for documentation – Need to move from passive documentation to active use of information and knowledge creation: activation! – Need to move from cross border exchange to engagement of communities and individuals: empowerment! • Standards and profiles address a predefined exchange of information. – Need sharing and use of content & structure, across national, regional, local jurisdictions: trust & flow! Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 25

26. Making Digital Work for health with Trust and Flow • Co-create – to make it real using standards • Governance – to make it scale for large-scale deployment • Alignment – to make it flourish in a sustainable way Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 26

27. eStandards project vision is that of a global eHealth ecosystem Where: ▪ people have navigation tools for safe and informed health care ▪ interoperability assets fuel creativity, entrepreneurship, and innovation eStandards: ▪ nurture digital health innovation ▪ strengthen Europe’s voice & impact ▪ enable co-creation and trusted provider-user relationships www.estandards-project.eu Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects Source: eStandards D3.1 27

28. eStandards Project Highlights • Problem: Standards roadmap to support large-scale eHealth deployment • Ambition: standards organizations as the authority and shepherd of high quality standards to advance and sustain cost effective integrated health services. Key outcomes: – eStandards lifecycle model – Cookbook of best practices for interoperability practitioners – Co-creation, Governance, Alignment (CGA) Framework – Applications on Patient summaries Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects 28

29. Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects Several viewpoints inform the creation of roadmap elements Identification of Needs taking perspectives into account Necessary Artefacts and components part of the EIF Actions to be taken Trust & Flow ➢ Knowledge innovation ➢ Information exchange ➢ Data capture ➢ Generic Requirements ➢ State of the Art ➢ Development Needs Phases in the Health Informatics Standards Life Cycle Base Standards Use Case based Standards Sets Assurance and Testing Live Deployment Feedback and Maintenance Tooling and Education Forums and Monitoring eStandards eHealth DSI 29

30. Patient summary standards Think Patient summary as vaccinations medications encounters Identification allergies Implantable devices Health team Security preferences Security preferences problems Patient Summaries in Paediatric Emergencies: Policies, Standards, and Prospects

31. Patient summaries help build trust and improve quality of services in community services • Interacting with the patient and the family • Quality assurance • Health goals • Early warnings • Transitions of Care: Smooth discharge, transitions, and hand-offs • Emergency or Urgent episodes: Safe care • Risk Assessment

32. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. What is an IPS ? 32 Possible Future extensions and useIntended Use As a libraryAs a document The IPS is a document ! Immunization Allergies and Intolerances Plan of care

35. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The FHIR IPS IG (STU) 35 http://hl7.org/fhir/uv/ips/profiles.html ◼ Under STU Ballot (May 2018)

36. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The IPS Structure IPS Attribute Collection (e.g. Patient Attributes) IPS Sections (e.g. Allergies and Intolerances) Non-IPS Sections

37. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The IPS Sections Medication Summary Allergies and Intolerances Problem List Immunizations History of Procedures Medical Devices Diagnostic Results Past history of illnesses Pregnancy (status and history summary) Social History Functional Status (Autonomy / Invalidity) Plan of care Advance Directives Vital Signs

39. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The IPS Composition 39 GET http://app.srdc.com.tr/fhir/stu3/Composition/demo-ips-dany-boy-1

40. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The IPS “document” 40 The first is a Composition It has an identifier The actual resource Resources that have to be included (STU3) • Composition.subject • Composition.encounter • Composition.author • Composition.attester.party • Composition.custodian • Composition.event.detail • Composition.section.entry • All referred resources for the IPS Profile

41. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The IPS “document” 41 GET http://app.srdc.com.tr/fhir/stu3/Bundle/demo-ipsbdl-dany-boy-1

42. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The IPS “document” 42 POST http://app.srdc.com.tr/fhir/stu3/Composition/demo-ips-dany-boy-1/$document New Bundle POST http://app.srdc.com.tr/fhir/stu3/Composition/demo-ips-dany-boy-1/$document?persist=true

43. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The Dany Boy’s story ◼ Dany is a 14 year old boy with a diagnosis of asthma made by his primary care practitioner when he was 5 years old. He has many acute attacks which are triggered by cold weather , pollen and house dust mite as well as viral respiratory tract infections. ◼ <….> 43

44. © 2016 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. The Dany Boy’s story 44 Clinical scenario for MIE Composition Section Dany is a 14 year old boy. composition Patient with a diagnosis of asthma made by his primary care practitioner when he was 5 years old. problems list Condition1 Practitioner He has many acute attacks problems list Condition1 (evidence) Observation1-1 problems list Condition1 (condition-dueTo) one code/text per cause Allergies list AllergyIntolerance He is reviewed regularly by the PHC team including the nurse who checks his inhaler technique and makes sure that his agreed written asthma plan is up to date . TDB …. which are triggered by cold weather, pollen and house dust mite, as well as viral respiratory

45. Essential data in pediatric emergency Care Contents and process Rianne Oostenbrink Erasmus MC – Sophia Children’s Hospital

46. ED perspective Diagnosis/Severity Triggers Current tx/interactions

47. ED perspective Diagnosis/Severity Triggers Current therapy/interactions

48. ED perspective Diagnosis/Severity Triggers Current tx/interactionsPatterns (prevention) instability

49. ED perspective Diagnosis/Severity Triggers Current tx/interactionsPatterns (prevention) Instability Knowledge Care/confidence

52. ED perspective Diagnosis/Severity Triggers Current tx/interactionsPatterns (prevention) Instability Knowledge Care/confidence Databundle Contents Proces/delivery

53. Dany, 14 “diagnosis of asthma made by his primary care practitioner when he was 5 years old. He has many acute attacks which are triggered by cold weather, pollen and house dust mite as well as viral respiratory tract infections” The PHC team check his inhaler technique and makes sure that his agreed written asthma plan is up to date Daily situation management Life at School School do not always allow for Dany's asthma. Dany had two severe episodes when the ambulance had to be called at school paediatric respiratory specialist suggested some new medications and has also gained the family consent to enter into a clinical trial Receiving the best care Continuity of care In the last two years Dany has attended a variety of Emergency departments Dany wonders how his treatment is going to be managed when he becomes an adult. Growing up The importance of the patient summary for Dany

54. A mobile app to guide the patients A support tool for the caregivers An information screen to improve the wait An administartive app supporting the processes

55. What information in the summary ?

56. E-immunisation Registries / Immunisation Information Systems MIE 2018 – 25 April 2018 Tarik Derrough Senior Expert Vaccine Preventable Diseases Vaccine Preventable Disease Programme European Centre for Disease Prevention and Control

57. IIS… are confidential, population-based, computerized systems that record, store, and provide access to all individual immunisation information. They aim to be comprehensive and community-wide, covering individuals in a specific geographic area across multiple healthcare providers Confidential Population-based Identify pockets of needs Exchange data with multiple providers Assist providers in immunisation Help improve vaccination rates and reduce vaccine-preventable diseases Create comprehensive records Support Clinical decision Generate reminders to ensure on-time vaccinations Assist with logistics of the programme (supply, inventory…) Create consolidated reports Assist programme monitoring

59. http://ecdc.europa.eu/sites/portal/files/documents/immunisation-systems.pdf

60. Status of IIS implementation in the EU/EEA countries – November 2016 * Germany and Sweden have national systems that do not have the ability to consolidate immunisation histories for use at point of clinical care. Their systems only provide aggregated data on vaccinations at population level. Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

61. Access rights to the IIS – within a country

62. Sharing and access of immunisation information across borders There are no international guidance for vaccination card/certificates on format or necessary information in order to consider it as valid and genuine Need for agreement on a set of information and propose this to become a standard Benefits: ▪ Facilitate transfer of immunisation data across the EU and across E-immunisation registers ▪ Fulfil international requirements (e.g. YF vaccination)

63. Thank you for your attention

65. Characteristics of an ideal system (some of) ▪ Inclusion of all persons at birth, or as early as possible and throughout a lifetime ▪ Unique Identifier shared across the health system ▪ Info on geographical area of residence ▪ Information about the vaccines given, dates, and provider ▪ Allowing aggregation of data by geographical level ▪ Allowing timely individualised follow-up ▪ Integrating immunization-related capabilities within EHRs ▪ Data security and protection of patient confidentiality ▪ Allowing personalised access to all of those that need to know ▪ Allow citizen access ▪ High quality data

66. Context – IIS in the EU – Supportive legislation 6 Jun. 2011: Council conclusions on childhood immunisation: successes and challenges of European childhood immunisation and the way forward Inviting Member States to “….consider introducing or further developing immunisation information systems, including improved registration, where applicable, and pharmacovigilance systems” 8 Jul. 2011: Council conclusions on childhood immunisation: successes and challenges of European childhood immunisation and the way forward http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=uriserv:OJ.C_.2011.202.01.0004.01.ENG 1 Dec. 2014: Council conclusions on vaccinations as an effective tool in public health http://www.consilium.europa.eu/uedocs/cms_data/docs/pressdata/en/lsa/145973.pdf 1 Dec. 2014: Council conclusions on vaccinations as an effective tool in public health Inviting the European Centre for Disease Prevention and Control (ECDC) to “…place technological and IT tools at the disposal of Member States and improve links to existing European portals and tools to support Member States in their efforts to strengthen vaccination as an effective tool in public health"

67. Context – IIS global - WHO EUROPEAN VAP EVAP Objective 4: Strong immunization systems are an integral part of well- functioning health system Priority 2: Strengthen monitoring and surveillance systems. “Develop and promote the use of new information technologies for collection, transmission and analysis of immunization data within immunization information systems that are well integrated with communicable disease and health information systems” http://www.euro.who.int/__data/assets/pdf_file/0007/255679/WHO_EVAP_UK_v30_WEBx.pdf?ua=1

68. Upcoming initiatives EU Council recommendation on vaccination (end April 2018) Joint Action on Vaccination (Lead: France, INSERM) ▪ Specific work package on IIS ▪ Lead: Denmark and Croatia ▪ ECDC as partner Other related initiatives on E-health

69. IIS - ECDC in a supporting role ▪ Recognised as an integral part of the VPD work programme at ECDC ▪ Support Member States as an integral part of a well-functioning immunisation programme: ▪ Survey on level of implementation 2016 ▪ Eurosurveilance special issue 2017 ▪ Technical guidance (publication June 2018): Aim to provide guiding principles and good practices for implementing and developing an IIS ▪ Providing support to Member States through in-country visits/workshops and technical documentation (e.g. Spain, Cyprus, Austria) ▪ Advocating on the advantages of IIS with key stakeholders: - DG SANTE and DG Connect: Linking E-health and M-health to immunisation - EU/International Standard bodies - EU and International “IIS managers”

70. IIS - ECDC in a supporting role ▪ Creating a network of expertise through the collaboration with international partners (WHO/CDC/AIRA + EU Member States) and linking with international projects (e.g. Scientific Societies engaged in E-Health, Joint Action on vaccination, MOCHA/H2020: Models Of Child Health Appraised) - Best-practice sharing - Twinning exchanges - Striving for shared solutions to strengthen interoperability and standardisation

71. General Purposes of an IIS KEY STAKEHOLDERS • Citizens have immediate access to their immunisation history and information on diseases for which they are vaccinated against • Health care workers have access to their patient vaccination history to ensure high standard of care and tailored immunisation • Public health authorities have access to a large set of data needed to be able to identify and respond quickly to concerns (e.g. vaccine safety signals) in order to maintain the confidence of an increasingly vaccine hesitant public who are in need of evidence-based data.

72. General Purposes of an IIS cont. Provide information to make better operational decisions ▪ To support the delivery of the immunisation programme at the point of administration ▪ To enable immediate access to individual immunisation history ▪ Provide information to make better informed strategic decisions ▪ To maintain and provide access to consistent and quality data on immunisation and on the population ▪ To support the benefit/risk monitoring of vaccines and vaccination programmes

73. Linkage with other health outcome registers in 16 EU/EEA countries with IIS 73 Are you able to link to the following No Yes, these systems are integrated Yes, linkage routinely done Yes, linkage for specific purposes Primary care patient record system/databases MT, DE, IE, RO, UK ES, DK, PT, SE, LV FI BE, IS, NL, NO Hospital discharge diagnosis register/database MT, DE, IE, RO, UK LV ES, FI BE, DK, IS, NL, NO, PT, SE Notifiable communicable diseases database MT, DE, IE, RO, UK ES, FI, NL BE, DK, IS, LV, NO, PT, SE Pharmacovigilance (vaccine safety) registries MT, DE, IE, PT, RO, UK LV NL, ES BE, DK, IS, NO, SE, FI HU – no answer Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

74. Example: Valencia IIS

75. Example: Finnish IIS Source: Baum U, Sundman J, Jääskeläinen S, Nohynek H, Puumalainen T, Jokinen J. Establishing and maintaining the National Vaccination Register in Finland. Euro Surveill. 2017;22(17):pii=30520 2000: THL project to collect nationwide information about primary healthcare visits (Avohilmo) 2009: first pilot to collect real-time data of primary healthcare visits 2010: The fields describing vaccinations were included in Avohilmo (real-time data entry) 2015: all operational HCCs (153/153) had joined Avohilmo

76. IIS functions and values

77. Functionalities Individual vs Population level

78. Use of IIS in planning immunisation activities 78 Country Automatic reminder sent to vaccine recipient Automatic reminder sent to vaccine provider Built-in decision support system/decision tree IIS identify individuals incompletely vaccinated according to age Can record reasons for vaccine refusal or hesitancy Belgium (Flanders) x Denmark x Finland x Germany Hungary x Iceland x x x Ireland x x Latvia x x x x Malta x x x Netherlands x x x Norway x x Portugal (mainland) x x x x x Romania x x Spain (Andalusia) x x x x Sweden x UK (England) x x x x Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

79. System design, development and implementation

80. System designing Identify the needs01 Identify the key functions to meet the needs 02 03 Identify the minimum fields to support the key functions

81. What are the needs? What problem(s) are you trying to solve? The problem might be: ▪ to maintain an overview of the individual vaccination status of all vaccinees ▪ Consolidating vaccines administered by different providers and in different settings ▪ Determining which vaccinations are due or overdue ▪ To monitor vaccination coverage ▪ to form a reliable basis for research into the effectiveness and safety of the vaccines in the programme. ….

82. Example from Spain Diversity of subnational systems

83. What are the key functions of an IIS? ▪ What are the minimum functions an IIS should do? Or, what will the system do to address the key needs? ▪ To address the problem of a consolidated record for each individual/patient the system must e.g. : ▪ Record a person/patient’s personal information ▪ Record vaccine doses administered ▪ Record the name of the person that administered the vaccine ▪ Record the location of vaccine administration ▪ ---

84. Key considerations ▪ Interdisciplinary teams and organisations ▪ Mapping the context ▪ Supportive legislation ▪ Anticipating challenges and building them into the project plan ▪ High level comprehensive conceptual model of the system ▪ Costs and benefits of an IIS ▪ Defining modes of funding ▪ Different system development options ▪ Approaches for system roll-out ▪ Training users on the system

85. Implementation Difference between centralized “top-down” and decentralized “bottom-up” approaches

86. Example. BOTTOM-UP CANImmunize ▪ Most decentralized federal country in the world ▪ Every province has its own immunization information system • different immunization schedule • different immunization information sheets • different immunization providers • different school immunization requirements ▪ CANImmunize viewed as one way to address some of these challenges ▪ Patient-centered initiative

87. Example. TOP DOWN Denmark System financed by the National Government and governed by the National Institute of Public Health. The National board of eHealth is responsible for the IT/technical development and the integration with hospitals and GP IT systems. Aim: to facilitate calculation of vaccination coverage and access to individual-level immunisation records. 2000 - National childhood vaccination database 2008 - National vaccination register (including vaccinations outside the national childhood vaccination programme) 2012 - Research registry that captured electronic data on reimbursement of vaccination to conduct studies e.g. vaccine effectiveness 2013- Voluntary National system in the form of an electronic patient record 2015- National system became compulsory Source: Grove Krause T, Jakobsen S, Haarh M, Mølbak K. The Danish vaccination register . Euro Surveill. 2012;17(17):pii=20155. Available online: http://www. eurosurveillance.org/ViewArticle.aspx?ArticleId=20155

88. System-level considerations

89. Recording immunisation event data Who? Where? When? How? What?

90. Who? Population groups covered by the IIS 90 BE, DE, DK, ES, FI, IS, LV, NO, RO, SE HU, NL, RO, SE, UK IE 0 2 4 6 8 10 12 Life-course data Children & adolescents School-based No. of countries Populationgroup Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

91. What? Data Elements Standardisation IIS need to collect and present information in a seamless format ▪ Data is shared with multiple providers – it needs to be defined consistently ▪ EHR vendors have a harder time connecting to IIS that don’t follow interoperability standards

92. Standardisation Situation in the US and Norway NORWAY: ▪ EHR vendors have to be pre-approved, with acceptance testing towards SYSVAK. ▪ Currently there are 4 pre-approved vendors in Norway ▪ The IIS obtains data directly through electronic communication from the HER: The system operates in accordance with Norwegian national standards, with standards for communication from the EHR to SYSVAK based on ebXML technology FINLAND: ▪ Each software company designs the data entry into its patient information system software following its own guidelines concerning the use of coding and field validation rules. ▪ The process of extracting the data is fully automated and daily, comprising new primary healthcare visit records and updates to existing primary healthcare visit records each time. USA: ▪ 632 unique vendors using an unknown number of products ▪ 64 IIS using at least ~25 unique systems/ platforms

93. Recording of information on the vaccine administered Selected from a list of vaccines that are: ▪ On a list of standard vaccine codes created for the IIS ▪ Uploaded (e.g. from electronic medical files) by a web service or similar ▪ Available through linkage to a product database of vaccines ▪ Identified electronically using bar code reader or 2D data matrices ▪ Entered manually in the IIS

94. Individuals identification in the IIS 94 • All countries use a unique identifier to record each immunised individual BE, DK, ES, FI, IS, LV, MT, NL, NO, SE, UK DE, HU, IE, RO PT How the unique ID is generated Birth or immigration Specific ID for IIS Healthcare services Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

95. Other considerations Denominator Data Quality Data Storage

96. Is IIS information fed by any population registry? 96 BE, LV, MT, NL, NO, SE, UK ES, HU, PT DE, IE, RO DK, IS FI 0 1 2 3 4 5 6 7 8 Civil population registries Healthcare population registries No, data entered manually at patient encounter Both civil and healthcare registries Other No. of countries Registries Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

97. Outputs – real time vaccination coverage by birth cohorts Source: https://www.ssi.dk/data - data up to 1 March 2018

98. Outputs – real time vaccination coverage by birth cohorts at communal level (NUTS 3) Source: https://www.ssi.dk/data - data up to 1 March 2018

99. NHS Digital interactive data dashboard The 2016-17 annual COVER report is accompanied by a new interactive data dashboard, with four years of comparative local data, which has been developed by NHS Digital in collaboration with PHE Source: http://bit.ly/child_vaccstats_annual

100. Governance

101. Governance for the IIS 101 OTHER: LV – National Health Service SK – National Health Information System MT – MoH and Primary Health Care DE, DK, FI, HU, IS, NL, NO, SE BE, ES, UK PT, RO IE 0 1 2 3 4 5 6 7 8 9 National Institute of Public Health Regonal Health Authorities National Institute of Public Health & Ministry of Health Ministry of Health No. of countries Governancebody

102. Challenges and successes

103. Successes and challenges Successes ▪ High-level of implementation in the EU and Many country level initiatives ▪ High level commitment • EU, ECDC, WHO and member states • Favourable EU policy agenda ▪ Integration with European and national digital strategies ▪ Integration with patient centered care initiatives ▪ Addressing issues of vaccine hesitancy Challenges ▪ Fragmentation at national level: Need to have solutions that are appropriate for subnational/local levels yet compatible with systems nationwide and potentially internationally ▪ Allow flexible systems where vaccination may be captured in different systems (e.g. hospital based vaccination) ▪ Interoperability and standards ▪ Evaluation of effectiveness of IIS ▪ Sustainability: Understanding that this is a looooooong and costly process

104. Conclusions ▪ Why are we interested in IIS/EIR? - Increase performance of immunization programs? - Better monitor program performance? - Other reasons? ▪ Evaluation of effectiveness, coverage rates, reminder systems etc. ▪ Exploiting new technologies (E-health, mhealth) - ? Other new technologies (bar code scanning, block chain, AI) ▪ Exploiting linkages – going beyond coverage assessments – vaccine safety and effectiveness – using for projections/supply-chain management ▪ Matching needs for national/subnational solutions with integration at European level ▪ Role of citizens - empowerment

105. French context How to best take into account the complexity of delivery of the immunisation programme in France? Link with multiple EHR? IIS in the context of mandatory vaccination? Cost benefit mind-set to secure efficient maintenance and focus on priorities?

106. Acknowledgments Colleagues at ECDC, Kate Olsson ECDC IIS Expert Group Member States National Focal Points for VPD

107. Extra slides

108. Advantages of IIS (non-exhaustive list) ▪ make it easier for clinicians to administer appropriate vaccines effectively and efficiently ▪ increase knowledge and acceptance of vaccines among patients and their caregivers ▪ improve vaccination tracking and timeliness ▪ make it easier to gain access to immunisation histories ▪ improve vaccination uptake and monitoring ▪ If well designed and implemented can be easy to use and well accepted Great potential of linking IIS to broader healthcare system tools to measure health outcomes and provide timely information for action to public health authorities and Ministries of Health

109. Terminology What is an Immunisation Information Systems? Immunisation information systems (IIS) are confidential, population-based, computerized information systems that record, store, and provide access to individual immunisation information. They aim to be comprehensive and community-wide, covering individuals in a specific geographic area across multiple healthcare providers Timely retrieval of immunisation history at the individual level enables the immunisation provider to determine appropriate individual vaccinations and vaccine recipients to have a complete record of vaccines received. Longitudinal monitoring of vaccine uptake and coverage facilitates decision-making at the population level and the monitoring of vaccination policies. In addition to these functionalities, IIS can offer other capabilities, such as vaccine supply and stock management, and adverse event reporting. Different systems range in complexity and scope.

110. AIRA – Functional standards

111. Use of EIR data for research

112. Developments - Publications Peer-reviewed publication to document the benefits of IIS

113. Terminology (take out) IMMUNISATION RECORD Paper registry or paper record Case-based, Not easy retrieval of a person immunisation history, Fragmented information ELECTRONIC PAPER REGISTRY OR ELECTRONIC IMMUNISATION RECORD ELECTRONIC IMMUNISATION REGISTRIES (EIR) Computerised, confidential, population-based information systems that contain data on vaccine doses administered. Main functionalities include vaccine coverage monitoring (e.g. by provider, by target groups, by antigens…) and provide outputs for individual follow-up IMMUNISATION INFORMATION SYSTEM (IIS) Increased functionalities such as vaccine and supply stock management, AEFI reporting, reminder systems, interfaces for the general public and healthcare professionals etc… Digitalisation of an immunisation paper registry Compilation of records (database)

114. System designing (maybe take out this slide and just use slide 23 and below can be notes for you) Problem --> Needs --> Key functions --> Data needs Identify the problem Dependent on the setting and according to set objectives. To help define system needs, required functionalities and data needs • Programmatic needs such as determining immunisation coverage levels in real-time • Consolidating information from different IIS (e.g. regional IIS) • Consolidating vaccine information collected by different providers

115. What data fields are required to meet each functionality? (take out? Repeat of the page before) What fields must be captured to support the key functions? To ensure complete information for the recording a person/patient’s personal information the following fields must/should be captured by the system: ▪ Surname(s) ▪ Given Name(s) ▪ Date of Birth ▪ Gender ▪ Birth Order ▪ Birth Location (Municipality/Local Jurisdiction/Country) ▪ Patient address ▪ Patient phone number ▪ …

116. Business requirements for enhancement/changes to IIS – example from North Dakota IIS – Maybe take out 1 . General Information: Scope, Project references, Acronyms and abbreviations, Points of contact (key stakeholders and others who provided input) 2. Current System Summary: Background (reasons for enhancements/changes), Current system functionality (details on how current process works), Current methods and procedures (flow diagram of current workflow) 3. Proposed Methods and Procedures: Summary of improvements/enhancements (short overview of project), Functional improvements (details about project requirements, flow diagram of new workflow after enhancements), Summary of impact 4. Detailed Characteristics (i.e. specific performance requirements): Accuracy and validity checks needed in new functionality; timing of functions; capacity limitations or requirements), System functions (including flow diagrams), Input and output requirements 5. Design Considerations: System design including screen mock-ups and descriptions of changes to current screens 6. Security: Security control points (input controls, output controls, process controls), System monitoring and auditing (considerations for logging, triggering criteria and identification information; audit trail considerations)

117. Take out? Proposed variable Justification and need Vaccine provider Name, Surname and ID of the vaccine provider For the identification of the vaccine provider Location of the health facility or vaccination centre Type of vaccine provider (private/public) Contact telephone Email address Vaccine Recipient Unique ID For the identification of the vaccine recipient Name, surname, second name Date of birth For the identification of the vaccine recipient and to generate analysisSex Place of residence For the identification of the vaccine recipient, contacting the vaccine recipient, and to generate analysis Telephone number and e-mail address For contacting the patient Occupation For the determination of specific at-risk occupational group Name, surname, unique ID of parents or legal tutor, and relationship to the patient For the identification of the vaccine recipient parents or legal guardian Patient status indicator on the IIS: Provider facility level Other potential information fields: ethnicity, patient multiple birth indicator, patient birth order, birth region, birthing facility name For analysis Vaccination details Date of administration For determining the vaccination status of the vaccine recipient and determine appropriate upcoming vaccinationDose # Brand name For the identification of the vaccine administered Antigen(s) For the identification of the antigen administered Batch number For the identification of the vaccine administered and to generate analysis Reason for refusal For specific analyses and inform actions Reason for contra-indication Type of vaccination (on or off-routine programme, catch-up campaigns For specific analyses

118. Access rights to IIS (n = 16 EU/EEA countries) 118Source: Derrough T, Olsson K, Gianfredi V, Simondon F, Heijbel H, Danielsson N, Kramarz P, Pastore-Celentano L. Immunisation Information Systems – useful tools for monitoring vaccination programmes in EU/EEA countries, 2016. Euro Surveill. 2017;22(17)

119. Finnish IIS data fields 119

120. Possible Workshop Outcome • To take the work forward • Identify common issues • Seek vehicle to analyse issues and develop ‘solution’ • Better care, better experience, better outcome

121. Brussels Meeting? • Who? Stakeholders • HL7, Paediatricians, Emergency Doctors, Ambulance, Child Patient NGOs, School Health Service, DG Infso, Health Systems; Mobile Health World, MOCHA, EUPHA C&AH • Why? To identify • Issues, Problems, necessary Research; prototyping; Field testing • What proposals to submit where • Outcome • Working papers; concept exchange; outline submission(s)

122. Notes from discussion IPS recommendations • Update of vaccination registry • Access to vaccination registry • Sharing • Citizen/GP • PS info producer /consumer • Referral asthma • Access to good data • Citizens add data/ qualifiers / quality/ learn/improve • • Provenance: health professionals access/use info • Boundaries and process • Demand/call obligation.

123. Rapporteur Notes • Trillium II workshop in Gothenburg, April 25th 2018 • Various presentations were held circling around pediatric care, vaccination and patient summaries • One example was the tetanus status of children • Need for an emergency data set and data standards • The emergency center should be able to receive information when a child is received from a school • High degree of variation within primary pediatric care delivery, yet despite the variation of the delivery system, the data should be the same • MOCHA international research readiness instrument • Assessed children datasets and ran a standardized query. Out of 165 DBs, only 3 could answer the query • Need for standardized data for HSPA • Two upcoming questions: should recommendations be included in the IPS and what is the procedure of using the IPS? • A difference exists between child care and adult care, a question of development and projection: • From daily care, to school, to GP, to emergency care • Question of access plays a role: different access between home, GP, ED, school, who has access and what level of access? • Example of immunization information system and national vaccination systems: • Again question of access and timeliness/actuality • Citizens should have a read and write access to immunization systems to see and update their vaccination status • On one hand, many countries offer the WHO international certificate of vaccination or prophylaxis but many times the patient him/herself is responsible for collecting the information and keeping it up to date • Citizens access to an immunization system can be a driver to improve the system • It is a question of regulation/law/policy

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