Hjernetegn.dk - The Danish Central Nervous System Tumor Awareness Initiative Digital Decision Support Tool: Design and Implementation Report

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  • Kathrine Synne Weile
  • Mathiasen, René
  • Jeanette Falck Winther
  • Henrik Hasle
  • Louise Tram Henriksen

Background: Childhood tumors in the central nervous system (CNS) have longer diagnostic delays than other pediatric tumors. Vague presenting symptoms pose a challenge in the diagnostic process; it has been indicated that patients and parents may be hesitant to seek help, and health care professionals (HCPs) may lack awareness and knowledge about clinical presentation. To raise awareness among HCPs, the Danish CNS tumor awareness initiative hjernetegn.dk was launched. Objective: This study aims to present the learnings from designing and implementing a decision support tool for HCPs to reduce diagnostic delay in childhood CNS tumors. The aims also include decisions regarding strategies for dissemination and use of social media, and an evaluation of the digital impact 6 months after launch. Methods: The phases of developing and implementing the tool include participatory co-creation workshops, designing the website and digital platforms, and implementing a press and media strategy. The digital impact of hjernetegn.dk was evaluated through website analytics and social media engagement. Implementation (Results): hjernetegn.dk was launched in August 2023. The results after 6 months exceeded key performance indicators. The analysis showed a high number of website visitors and engagement, with a plateau reached 3 months after the initial launch. The LinkedIn campaign and Google Search strategy also generated a high number of impressions and clicks. Conclusions: The findings suggest that the initiative has been successfully integrated, raising awareness and providing a valuable tool for HCPs in diagnosing childhood CNS tumors. The study highlights the importance of interdisciplinary collaboration, co-creation, and ongoing community management, as well as broad dissemination strategies when introducing a digital support tool.

Original languageEnglish
Article numbere58886
JournalJMIR Medical Informatics
Volume12
Number of pages11
ISSN2291-9694
DOIs
Publication statusPublished - 2024

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© 2024 JMIR Publications Inc.. All rights reserved.

    Research areas

  • awareness initiative, central nervous system, clinical decision support, CNS tumor, CNS tumour, CNS tumours, co-creation, communication, decision support, decision support system, decision support systems, decision support tool, decision support tools, diagnostic delay, digital health initiative, digital health initiatives, health systems and services, pediatric CNS tumors, pediatric neurology

ID: 401128083