03966nam a2200493 c 4500 99376631793906441 DE-605 20260226140500.0 cr#||||||||||| 260225|2026 gw o 1|| | ger c 10.4126/FRL01-006527119 doi (DE-605)HT031413568 (DE-599)HBZHT031413568 DE-38M ger DE-38M DE-38M rda ger XA-DE DE-98 DE-38M 610 Schoeps, Melissa (DE-588)1380707242 aut Verfasser InKaPP schafft Transparenz & stärkt Teilhabe patient empowerment durch digitale Einsicht in Krebsregisterdaten 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 Patient empowerment through access to cancer registry data: development of a digital patient portal in the InKaPP pilot project Mainz Krebsregister Rheinland-Pfalz im Institut für digitale Gesundheitsdaten gGmbH [2026] 1 Online-Ressource (2 ungezählte Seiten) Illustrationen Text txt rdacontent Computer c rdamedia Online-Ressource cr rdacarrier Open Access Unrestricted online access star 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. Konferenzschrift 2026 Berlin (DE-588)1071861417 gnd-content Tiesler, Katina aut Verfasser Ribel, Dimitrij aut Verfasser Tatusch, Juliane aut Verfasser Hintz, Kristina aut Verfasser Tiebel, Christian (DE-588)1380703913 aut Verfasser Kachel, Philipp aut Verfasser Schwarzer, Katja aut Verfasser Institut für digitale Gesundheitsdaten RLP Geschäftsbereich Krebsregister (DE-588)1342555678 isb Herausgebendes Organ Deutscher Krebskongress 37. 2026 Berlin (DE-588)1391281020 orm Veranstalter https://repository.publisso.de/resource/frl:6527119 Volltext kostenfrei 99376631793906441 DE-98 NRW d 99376631793906441 DE-38M NRW d iall OA 38 M: ellinet; GND: (DE-588)1342555678