The Pancaresurpass project, funded by the EU's Horizon 2020, aims to implement a digital survivorship passport for childhood cancer survivors in six European countries from March 2021 to February 2025. This project will develop, test, and evaluate the passport within electronic health information systems, focusing on long-term follow-up care and patient empowerment. The initiative includes 17 partners from various sectors to address technological challenges and ensure effective integration into healthcare systems.

1. This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 824982. The material presented and views
expressed here are the responsibility of the author(s) only. The EU Commission takes no responsibility for any use made of the information set out.
The PanCareSurPass project:
March 2021 – February 2025
Implementation of the
Survivorship Passport (SurPass) in the
Electronic Health Information Systems (EHIS)
Riccardo Haupt
Istituto Giannina Gaslini, IT
Desiree Grabow
University of Mainz, DE

2. The SurPass “European Journey”
2008 2021
2019 - 2024
2021 - 2025
2013 - 2018
2011 - 2017
2011
2011 - 2017
2014 - 2017
2016 - 2019
2017 -
2018 -
2021 - 2023
20??

3. What is the Survivorship Passport?
 A document to be given to the individual patient
after the elective end of therapies
 Paper and electronic based
 Written in a simple way
 Containing cancer history and treatment information
 Providing guidance on survivor-specific long-term
follow-up of possible late effects
 Written and translatable in all languages of the EU

4. Long-term follow-
up visit #2
Long-term follow-
up visit #1
SurPass v1.2 (simplified) Implementation
Treatment Survivorship
Care Plan
SurPass
(Survivorship
Care Plan)
Individualized
SurPass 1
(Survivorship
Care Plan 1)
Prospective
individualized
SurPass 2
Survivorship
Care Plan 2
Continue ….
Survivorship
Care Plan #
Lifelong data preservation
Treatment
Summary
Additional
diagnostic tests
Additional
diagnostic tests
The long-term Cancer History
End of treatment
Diagnosis
IGHG/PCFU
recommendations
5 y CCS

5. Previous /actual EU projects Future
ENCCA ExPO-rNet
PanCare
SurFup
PanCare
FollowUp
PanCare
SurPass
SurPass version 1.0 1.0.1 v1.1 v1.2 v2.0
Platform set up/extension X XHL7 compliant
Update of list of items included in TS X X X
Updated TS items translated in 8
European languages
X X LT X
Recommendations (n. 1-4)
for follow-up care
X X X
Recommendations (n. 5-45)
for follow-up care
X X
SCP based on recommendations X X
Adaptation of SCP for country-specific
circumstances
XLT XAT, BE, DE, SP
The Survivorship Passport (SurPass)
structure and history
• 2011 – 2017: v1.0 Prototype development (ENCCA,)
and v 1.1 with first IGHG recommendations
/brochures (PanCareSurFup)
• 2014 – 2017 v1.0.1 Variables translations in European
languages (Ex-PO-r-Net)
• 2019 January: Test wise implementation v 1.1.1 in 7
AIEOP centers (AIEOP recommendations)
• 2020 - 2021: v1.2 development (PanCareFollowUp)
• IGHG/PanCare recommendations
• Algorithms for personalized care plan
• Draft follow-up form

6. PanCareSurPass
(March 2021- February 2025)
• Implement the SurPass digital tool in 6 clinical settings across Europe representing 3 different models of
health system organization:
• Homogeneous, national health record (AT, LT)
• Institutional medical record linked to national Cancer Registry (DE, BE)
• Institutional medical record linked to regional Electronic Health Record (IT, SP)
• Investigate and address possible barriers and facilitators for the digital implementation of the SurPass,
accounting for various stakeholders (IT experts, survivors, clinicians, healthcare decision makers).
• Integrate follow-up recommendations focusing on survivorship care for survivors who completed
treatment but are <5 years from diagnosis.
• Evaluate survivors empowerment and satisfaction with the digital tool.
• Develop a prediction model to help decision-makers to tailor the SurPass v2.0 implementation in their
context.
The EU call: Supporting Digital Transformation in HealthCare: SC1-DTH-13-2020: Implementation
research for scaling up and transfer of innovative solutions involving digital tools for people-centred care
The PanCareSurPass Project: Scale-up and implement the digital Survivorship Passport tool into medical
systems to improve person-centered care for childhood cancer survivors

7. 17 Partners, 7 countries
Late Effects Clinics & Registries
Stakeholder Representatives
Implementation, Policy, Health Economics & Support
IT & Interoperability Experts

8. The PanCareSurPass project
Data Sources
•Hospital Medical Records
•Cancer registries
Survivorship Care
Plan
Treatment Summary
HCPs
•Family doctors
•Local hospitals
•Emergency departments
National and regional Health Systems
Electronic Health Records
Survivors
• Access
• Patient-reported
outcomes

9. The PanCareSurPass project
WP Title – Topic (Leader)
1 Pre-Implementation Study (PMC)
2 Implementation Strategy Development (CCRI)
3 SurPass v2.0 - Technological challenges in 6 countries (HL7)
4 SurPass v2.0 - Conduct and analysis of Multi Country Implementation Study (IGG)
5 Development of Prediction Model (GÖG)
6 Communication, Dissemination and Future Implementation (PanCare)
7 Project Management (UMC-Mainz)
8 Ethics requirements (UMC-Mainz)
Desiree Grabow
Coordinator
Kylie O’Brian
Administrator
Riccardo Haupt
Research management
Management Team

10. The PanCareSurPass - Pert Chart

11. WP1-Pre - Implementation Study
• Identify barriers and facilitator for the:
• Implementation of SurPass v2.0
• Generation and use of SurPass v2.0 within health IT systems in six countries
• Provide general and country-specific recommendations and examples.
• Prepare and host a guideline workshop to develop
recommendations for survivorship care for <5 year CCS.
Prof. dr. Leontine Kremer

12. WP2 - Implementation Strategy
Development
• Develop an implementation strategy based on WP1 outcomes to further analyze
ethical, legal (privacy, security), social and economic (ELSE) parameters.
• Refine the Use cases, information models and supporting workflows in the six
health systems to provide life-long, people-centred survivorship care
to as many CCS as possible.
• Explore the feasibility of using SurPass v2.0 in cross-border services
and ERN Tumour Boards.
Prof. Ruth Ladenstein

13. WP3 - Technological Challenges in 6
Countries
• Design the SurPass v2.0 technical implementation architecture.
• Upgrade, test, configure and validate the SurPass v2.0 platform in six health
systems.
• Develop (FHIR) resources for semi-automatic data entry.
• Develop, implement and validate SurPass v2.0
integration components to connect SurPass to EHIS, registries
and national/regional EHP.
• Create a European-wide HL7 FHIR SurPass v2.0 implementation
guide and training materials.
Catherine Chronaki

14. WP4 - Conduct and Analysis of Multi
Country Implementation Study
• Conduct a multi-country Implementation study of SurPass v2.0, where health
data are derived either from:
• EHIS records (main cohort)
• Paper-based records (observational study - Intention to treat approach)
• Assess implementation of SurPass v2.0 for people-centered
care in the multi-country study in terms of:
• People centered care
• Feasibility
• Cost effectiveness
Dr. Riccardo Haupt

15. WP5 - Development of Prediction Model
• Assess the cost effectiveness of the SurPass v2.0 according to a
range of agreed upon criteria (cost-effectiveness/utility).
• Provide guidance on assessing the future impact of the SurPass v2.0
on healthcare and system performance.
• Develop a Prediction Model to help decision-makers decide on
the implementation of SurPass v2.0
Alexander Degelsegger-Márquez

16. • Raise awareness about the project‘s mission and its results.
• Inform: Educate the community and facilitate knowledge-exchange.
• Engage: Get input and feedback from the community.
• Promote: Disseminate output and results.
WP6 - Communication, Dissemination
and Future Implementation
Dr. Helena van de Pal

17. WP7 - Project Management
• Coordinate all activities in the project.
• Facilitate the scientific and research success.
• Integrate the research and clinical perspectives and facilitate
effective collaboration.
• Ensure the project meets its contractual commitments.
• Predict, mitigate and overcome research-related risk.
• Maximize the impact and broader value of the project.
Kylie O’Brien Dr. Riccardo Haupt
Dr. Desiree Grabow

18. WP8 - Ethics requirements
Ensure compliance with the ethics requirements‘ set out in this project
• Humans: Pre-Implementation study (WP1)
• Humans: Multi-country implementation study (WP4)
• Protection of personal data for the whole consortium
• General: Ethics Advisor report
Dr. Desiree Grabow

19. Additional partners
Prof. Dr. Anne
Uyttebroeck
KU Leuven, Belgium
Late-effects clinic -
Physician
Prof. Dr. T. Langer
UzL, Germany
Pediatric oncologist
Jelena Rascon
VULSK, Lithuania
Leader/supervisor
Adela Cañete
HULAFE, Spain
Pediatric Oncologist
Giulia Stabile
Cineca, Italy
Mathematician
Günter Schreier
AIT, Austria
dHealth Evangelist
Samira Essiaf
SIOPE, Belgium
CEO
Anita Kienesberger
CCI Europe Germany
Chair of CCI Europe Committee
Nico Gallo
ALiSa, Italy
Biostatistician

20. Previous /actual EU projects Future
ENCCA ExPO-rNet
PanCare
SurFup
PanCare
FollowUp
PanCare
SurPass
SurPass version 1.0 1.0.1 v1.1 v1.2 v2.0
Platform set up/extension X XHL7 compliant
Update of list of items included in TS X X X
Updated TS items translated in 8
European languages
X X LT X
Recommendations (n. 1-4)
for follow-up care
X X X
Recommendations (n. 5-45)
for follow-up care
X X
SCP based on recommendations X X
Adaptation of SCP for country-specific
circumstances
XLT XAT, BE, DE, SP
The Survivorship Passport (SurPass)
structure and history
• 2011 – 2017: v1.0 Prototype development (ENCCA,)
and v 1.1 with first IGHG recommendations
/brochures (PanCareSurFup)
• 2014 – 2017 v1.0.1 variables translations in European
languages (Ex-PO-r-Net)
• 2019 January: test wise implementation v 1.1.1 in 7
AIEOP centers (AIEOP recommendations)
• 2020 - 2021: v1.2 development (PanCareFollowUp)
• IGHG/PanCare recommendations
• Algorithms for personalized care plan
• Draft follow-up form
• 2021 - 2024: PanCareSurPass (v 2.0)

21. SurPass v2.0 (simplified) Implementation
Treatment Survivorship
Care Plan
SurPass
(Survivorship
Care Plan)
Individualized
SurPass 1
(Survivorship
Care Plan 1)
Prospective
individualized
SurPass 2
Survivorship
Care Plan 2
Continue ….
Survivorship
Care Plan #
Lifelong data preservation
Treatment
Summary
from EHIS
Additional
diagnostic tests
Additional
diagnostic tests
The long-term Cancer History
End of treatment
Diagnosis
IGHG/PCFU
recommendations
5 y CCS
Long-term follow-
up visit #2
PCSP/PCFU
<5 years CCS
recommendations

22. SurPass test wise implementations with
the PanCareSurPass project (2021-25)
V2.0 Link with EHIS
V2.0 Link with EHIS and
implementation in several clinics
V1.2 Manual data entry in several clinics

23. Conclusions
• The PanCareSurPass project represents a further step forward for the
implementation of the Survivorship Passport across Europe.
• PCSP will develop interoperability tools (HL7 compliant) for the two-
way data flow from the EMR and the SurPass platform and from EMR
to electronic health platforms (where available)
• With PanCarSurPass, we will test the SurPass implementation into
NHSs (6 Countries), and the access to the platform by survivors
• A prediction model for its future implementation will also be
developed