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Exploring Benefits of and Barriers to Patient Involvement Through Digital Tools in Psycho-Oncology: Qualitative Study
Caterina Schug1,2, Alexander Bäuerle3,4,5, Johanna Graf3,6,7,8,9
1Department of Psychosomatic Medicine and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-Nürnberg, Schwabachanlage 6, Erlangen, 91054, Germany, 49 91318544899.
Background:
Patient and public involvement is essential for developing patient-centered and acceptable eHealth interventions, yet little is known about how digital collaboration with patient representatives can best be implemented in psycho-oncological research.
Objective:
This study aimed to identify the benefits and barriers of digital collaboration in the development of an e-mental health application and provide recommendations to optimize digital collaboration with patient representatives in psycho-oncology research.
Methods:
Conducted from July to September 2023, this study involved digital semistructured interviews with 5 patient representatives from the Reduct trial, a multicenter randomized controlled trial to evaluate the efficacy of the web-based psycho-oncological training Make It. The interviews were analyzed using qualitative content analysis.
Results:
The findings highlighted multiple advantages of digital collaboration. These included significant reductions in travel costs and effort, personal acceptance and preference for digital methods, enhanced flexibility and accessibility, a reduced health burden, increased efficiency, and scalability. Conversely, several challenges were identified: social impacts or impediments due to less face-to-face interaction, technical difficulties, compromised effectiveness and quality of communication, diverse personal preferences and acceptance levels, organizational issues, cognitive demands, socioeconomic barriers, and safety concerns. The following recommendations to optimize digital collaboration were identified: maintaining regular communication and information exchange, valuing and committing to the collaboration, using diverse communication channels, ensuring comprehensible communication, integrating feedback, fostering openness and understanding, diligent documentation and recordkeeping, and providing targeted training and support for patient representatives.
Conclusions:
These findings confirm and specify previously known opportunities and challenges of digital collaboration, adding crucial insights for its implementation in psycho-oncological research. This research contributes to enhancing patient-centered approaches in psycho-oncology.
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