Periodic Reporting for period 3 - PanCareSurPass (PanCare studies of the scale-up and implementation of the digital Survivorship Passport to improve people-centred care for childhood cancer survivors)
Période du rapport: 2024-03-01 au 2025-08-31
As a result of improved childhood cancer treatments, more children and adolescents successfully survive cancer into adulthood. Almost 500,000 childhood cancer survivors (CCS) are now living in Europe, with about 8,000 new CCS each year. Compared to the general population, CCS represent a vulnerable population being at increased risk of developing health problems known as late effects, often resulting in lower quality of life. Many CCS are unaware of their personal risk for specific late effects, which reduces their ability to self-manage their own follow-up care and wellbeing. There is also a general lack of information among healthcare professionals (HCPs) about late effects, resulting in incorrect or delayed diagnoses and treatments. Information about cancer treatments given many years before may no longer be easily available, or available at all, to HCPs or CCS. Transition from paediatric to adult healthcare services is also a significant challenge for CCS, as is movement to a different region or country.
The Survivorship Passport (SurPass) is an innovative, digital tool that provides CCS and HCPs with the information needed for life-long survivorship care, better health promotion, improved late effects care and secondary cancer prevention. Importantly, the tool also reduces inequity by increasing access to information. For each CCS, the SurPass provides digital access to all relevant personal health data related to their cancer treatment (e.g. cancer diagnosis, treatment, etc.) in a Treatment Summary (TS) together with a personalised Survivorship Care Plan (SCP) based on international evidence-based clinical guidelines, as well as plain language information.
While the potential to improve people-centred survivorship care has been demonstrated for earlier versions of the SurPass, little is known about the costs and processes of scaling-up the digital tool and successfully implementing the tool in routine clinical care across Europe. PanCareSurPass worked to fill these knowledge gaps by looking broadly at implementation, while delivering and testing the next version of the SurPass (SurPass v2.0) in six European countries (Austria, Belgium, Germany, Italy, Lithuania, Spain).
The Survivorship Passport (SurPass) is an innovative, digital tool that provides CCS and HCPs with the information needed for life-long survivorship care, better health promotion, improved late effects care and secondary cancer prevention. Importantly, the tool also reduces inequity by increasing access to information. For each CCS, the SurPass provides digital access to all relevant personal health data related to their cancer treatment (e.g. cancer diagnosis, treatment, etc.) in a Treatment Summary (TS) together with a personalised Survivorship Care Plan (SCP) based on international evidence-based clinical guidelines, as well as plain language information.
While the potential to improve people-centred survivorship care has been demonstrated for earlier versions of the SurPass, little is known about the costs and processes of scaling-up the digital tool and successfully implementing the tool in routine clinical care across Europe. PanCareSurPass worked to fill these knowledge gaps by looking broadly at implementation, while delivering and testing the next version of the SurPass (SurPass v2.0) in six European countries (Austria, Belgium, Germany, Italy, Lithuania, Spain).
Over the project duration, the project team first completed a pre-implementation study looking at barriers and facilitators to implementing the SurPass through an online survey and Open Space workshops with key stakeholders (CCS, HCPs and more). The team also conducted a literature review to identify ethical, legal, social and economic factors that would affect SurPass uptake and use. To standardise approaches across countries as much as possible, IT and clinical experts worked together to develop work flows for how a SurPass would be created and used for individual CCS as part of routine follow-up care.
A new version of SurPass (v2.0) was delivered, available in the local languages of the six target countries, for use in a multi-country implementation study. IT experts worked on how to semi-automatically extract data from electronic health records and transfer it to the SurPass platform to make the process more efficient, applying HL7 FHIR standards. SurPass (v2.0) was certified as a Level I Medical Device and extensive testing was carried out to validate the SurPass platform before delivery of SurPass to CCS participating in the implementation study.
The implementation study was successfully completed with 410 SurPass delivered across Austria, Belgium, Germany, Italy, Lithuania and Spain. CCS and HCPs completed research questionnaires about a range of outcomes, including patient activation, satisfaction with the SurPass and quality of life. Health economics outcomes were also be collected for analysis. Results of the study will be published in open access, peer-reviewed journals.
The PanCareSurPass Implementation Toolkit was launched at the end of the project to support upscaling of the SurPass in new clinics and countries across Europe (pancare.eu/pancaresurpass-implementation-toolkit/). The toolkit includes useful project outputs, such as an example SurPass, the PanCareSurPass HL7 FHIR Implementation Guide and supporting materials, the Prediction Model and advocacy and policy recommendations for better Survivorship Care.
The project and its aims have been widely communicated to target stakeholders at major conferences and via the extensive networks of key partners. Published results are available in the project’s Zenodo community, which will be kept updated with future publications (zenodo.org/communities/pancaresurpass).
A new version of SurPass (v2.0) was delivered, available in the local languages of the six target countries, for use in a multi-country implementation study. IT experts worked on how to semi-automatically extract data from electronic health records and transfer it to the SurPass platform to make the process more efficient, applying HL7 FHIR standards. SurPass (v2.0) was certified as a Level I Medical Device and extensive testing was carried out to validate the SurPass platform before delivery of SurPass to CCS participating in the implementation study.
The implementation study was successfully completed with 410 SurPass delivered across Austria, Belgium, Germany, Italy, Lithuania and Spain. CCS and HCPs completed research questionnaires about a range of outcomes, including patient activation, satisfaction with the SurPass and quality of life. Health economics outcomes were also be collected for analysis. Results of the study will be published in open access, peer-reviewed journals.
The PanCareSurPass Implementation Toolkit was launched at the end of the project to support upscaling of the SurPass in new clinics and countries across Europe (pancare.eu/pancaresurpass-implementation-toolkit/). The toolkit includes useful project outputs, such as an example SurPass, the PanCareSurPass HL7 FHIR Implementation Guide and supporting materials, the Prediction Model and advocacy and policy recommendations for better Survivorship Care.
The project and its aims have been widely communicated to target stakeholders at major conferences and via the extensive networks of key partners. Published results are available in the project’s Zenodo community, which will be kept updated with future publications (zenodo.org/communities/pancaresurpass).
PanCareSurPass delivered an interoperable SurPass v2.0 to leverage the digital transformation of healthcare to improve people-centred survivorship care, with delivery of 410 SurPass in six pilot clinics. An evidence base and supportive materials that promote the scale up and wider implementation of the SurPass across Europe, both in new clinics in the project’s target countries and new countries, are key project results, showcased in the publicly available PanCareSurPass Implementation Toolkit.
Wide uptake of the SurPass across Europe will have a range of socio-economic and societal benefits, linked to delivering better survivorship care for all European CCS. CCS and HCPs will benefit from a tool that supports information sharing and people-centred care across health systems and over lifelong follow-up care. By delivering personalised information about previous cancer treatments and evidence-based, individual recommendations for future follow-up care, CCS and HCPs can work together to minimise the risk and impact of late effects, as well as improve quality of life and wellbeing. The project has improved our understanding of the organisational, systematic, social and behavioural changes needed to successfully embed evidence-based, innovative digital solutions like the SurPass into daily practice in order to develop more responsive, effective, efficient and equitable health systems.
Wide uptake of the SurPass across Europe will have a range of socio-economic and societal benefits, linked to delivering better survivorship care for all European CCS. CCS and HCPs will benefit from a tool that supports information sharing and people-centred care across health systems and over lifelong follow-up care. By delivering personalised information about previous cancer treatments and evidence-based, individual recommendations for future follow-up care, CCS and HCPs can work together to minimise the risk and impact of late effects, as well as improve quality of life and wellbeing. The project has improved our understanding of the organisational, systematic, social and behavioural changes needed to successfully embed evidence-based, innovative digital solutions like the SurPass into daily practice in order to develop more responsive, effective, efficient and equitable health systems.