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Empowering Health Care Actors to Contribute to the Implementation of Health Data Integration Platforms: Retrospective
Marcel Parciak1,2, Noëlla Pierlet1,2,3, Liesbet M Peeters1,2,4
1Biomedical Research Institute, UHasselt - Hasselt University, Diepenbeek, Belgium.
Abstract:
Health data integration platforms are vital to drive collaborative, interdisciplinary medical research projects. Developing such a platform requires input from different stakeholders. Managing these stakeholders and steering platform development is challenging, and misaligning the platform to the partners' strategies might lead to a low acceptance of the final platform. We present the medEmotion project, a collaborative effort among 7 partners from health care, academia, and industry to develop a health data integration platform for the region of Limburg in Belgium. We focus on the development process and stakeholder engagement, aiming to give practical advice for similar future efforts based on our reflections on medEmotion. We introduce Personas to paraphrase different roles that stakeholders take and Demonstrators that summarize personas' requirements with respect to the platform. Both the personas and the demonstrators serve 2 purposes. First, they are used to define technical requirements for the medEmotion platform. Second, they represent a communication vehicle that simplifies discussions among all stakeholders. Based on the personas and demonstrators, we present the medEmotion platform based on components from the Microsoft Azure cloud. The demonstrators are based on real-world use cases and showcase the utility of the platform. We reflect on the development process of medEmotion and distill takeaway messages that will be helpful for future projects. Investing in community building, stakeholder engagement, and education is vital to building an ecosystem for a health data integration platform. Instead of academic-led projects, the health care providers themselves ideally drive collaboration among health care providers. The providers are best positioned to address hospital-specific requirements, while academics take a neutral mediator role. This also includes the ideation phase, where it is vital to ensure the involvement of all stakeholders. Finally, balancing innovation with implementation is key to developing an innovative yet sustainable health data integration platform.
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