Factors Influencing Implementation of the Survivorship Passport: The IT Perspective

Abstract

Compared to the general population, childhood cancer survivors represent a vulnerable population as they are at increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. The Survivorship Passport aims to capture key health data about the survivors and their treatment, as well as personalized recommendations and a care plan with the aim to support long-term survivorship care. The PanCareSurPass (PCSP) project building on the experience gained in an earlier implementation in Giannina Gaslini Institute, Italy, will implement and rigorously assess an integrated, HL7 FHIR based, implementation of the Survivorship Passport. The six implementation countries, namely Austria, Belgium, Germany, Italy, Lithuania, and Spain, are supported by different national or regional digital health infrastructures and Electronic Medical Record (EMR) systems. Semi structured interviews were carried out to explore potential factors affecting implementation, identify use cases, and coded data that can be semi-automatically transferred from the EMR to SurPass. This paper reflects on findings of these interviews and confirms the need for a multidisciplinary and multi-professional approach towards a sustainable and integrated large-scale implementation of the Survivorship Passport across Europe.

IT-Related Barriers and Facilitators to the Implementation of a New European eHealth Solution, the Digital Survivorship Passport (SurPass Version 2.0): Semistructured Digital Survey

“…The survey was designed using the input from 6 earlier semistructured interviews with IT specialists from each of the participating centers, conducted by researchers from HL7 Europe [33]. The interviews were conducted to build up a picture of the relevant issues to be explored in the survey.…”

“…The availability of data systems and resources in each center is discussed accordingly (see also Tables 1-4). The center-specific HDE standards, interoperability frameworks, and coding systems for each center are described separately by Chronaki et al [33].…”

Updated International Guidelines for Survivorship Care after Pediatric Cancer: Practice Implications in a German and Austrian Comprehensive Care Network

“…eu) and national (Deutsche Kinderkrebsstiftung) funding. The joint compilation of recommendations (as reported in this manuscript), additionally including recommendations for survivors aged under 18 years, will be incorporated in an electronic tool, thereby facilitating management of LTFU for survivors [21,22].…”