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1000
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Verantwortlich
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Melissa Schoeps, Katina Tiesler, Dimitrij Ribel, Juliane Tatusch, Kristina Hintz, Christian Tiebel, Philipp Kachel, Katja Schwarzer ; Krebsregister Rheinland-Pfalz im Institut für digitale Gesundheitsdaten gGmbH
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1000
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Abstract/Summary
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BACKGROUND: InKaPP enables cancer patients to directly access their oncological patient record (oPA) from the Rhineland-Palatinate cancer registry (KR RLP) (1). The oPA offers a validated, cross-sector timeline of the disease, previously available only to physicians. The project aims to create a FHIRbased digital patient portal to ensure interoperability and includes patients in its design. METHODS: To incorporate the patient perspective, a workshop and discussion panels with cancer survivors were conducted. A pilot study (starting at the time of the conference) involves 36 patients accessing their oPA under medical guidance. Structured feedback will evaluate data accuracy and completeness. Additional questionnaires assess patients’ socioeconomic profiles and awareness of KR RLP. Semi-structured interviews examine perceived benefits, usability, and expectations. Analyses include qualitative content analysis (Mayring) and descriptive statistics. RESULT: Participants valued reviewing their own data and highlighted the importance of providing feedback on its accuracy during the first discussion panel. Further results (e.g., workshop findings, pilot study response rate) will be available at the conference. DISCUSSION: Initial findings indicate that patient involvement enhances transparency and acceptance of cancer registry data. Usability and perceived benefit are key factors in acceptance. CONCLUSION: InKaPP lays the groundwork for long-term patient access integration into German cancer registries. It fosters participation, raises awareness, and strengthens understanding of patient rights.
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