Periodic Reporting for period 2 - PanCareSurPass (PanCare studies of the scale-up and implementation of the digital Survivorship Passport to improve people-centred care for childhood cancer survivors)
Periodo di rendicontazione: 2022-09-01 al 2024-02-29
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 is working 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 is working 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 past 3 years, 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.
From the first months of the project, work started to develop and then test a new version of SurPass (v2.0) 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. Six production environments have now been launched for delivery of SurPass to 360 CCS participating in the implementation study.
Following extensive preparations, the implementation study was launched in November 2023. As of the end of year 3, 33 SurPass were delivered across Belgium, Italy, Lithania and Spain. CCS and HCPs will complete research questionnaires about a range of outcomes, including patient activation, satisfaction with the SurPass and quality of life. Health economics outcomes will also be collected for analysis.
Extensive initial work has been carried out for the health economics analysis and to set the foundation for the Prediction Model development. For example, costs related to setting up for implementation of the SurPass in the six clinics participating in the implementation study were collected and consultations were conducted to weight criteria that will be used in the Multi Criteria Decision Analysis (MCDA), which will serve as a tool to provide guidance on assessing the future impact of the SurPass on healthcare and system performance.
In addition, the project and its aims have been widely communicated to target stakeholders at major conferences, and the results of the pre-implementation have been published in a number of peer-reviewed journals (https://zenodo.org/communities/pancaresurpass).
From the first months of the project, work started to develop and then test a new version of SurPass (v2.0) 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. Six production environments have now been launched for delivery of SurPass to 360 CCS participating in the implementation study.
Following extensive preparations, the implementation study was launched in November 2023. As of the end of year 3, 33 SurPass were delivered across Belgium, Italy, Lithania and Spain. CCS and HCPs will complete research questionnaires about a range of outcomes, including patient activation, satisfaction with the SurPass and quality of life. Health economics outcomes will also be collected for analysis.
Extensive initial work has been carried out for the health economics analysis and to set the foundation for the Prediction Model development. For example, costs related to setting up for implementation of the SurPass in the six clinics participating in the implementation study were collected and consultations were conducted to weight criteria that will be used in the Multi Criteria Decision Analysis (MCDA), which will serve as a tool to provide guidance on assessing the future impact of the SurPass on healthcare and system performance.
In addition, the project and its aims have been widely communicated to target stakeholders at major conferences, and the results of the pre-implementation have been published in a number of peer-reviewed journals (https://zenodo.org/communities/pancaresurpass).
By the end of the project, the aim is to have an interoperable SurPass v2.0 implemented in six pilot clinics that leverages the digital transformation of healthcare to improve people-centred survivorship care. In addition, the team will develop 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. To this end, the project’s results will be used to develop an Implementation Toolkit for further European implementation of the SurPass for people-centred care in various healthcare settings across Europe, as well as a Prediction Model to help healthcare decision makers assess the potential benefits of the SurPass to their 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 will also improve 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 will also improve 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.