New technology must support, not restrict humaneness: a qualitative interview study on the potential influences of a new digital system on specialist palliative home care

Electronic health applications are playing an increasingly significant role in modern healthcare systems. Therefore, the European Union proposed GAIA-X - a digital ecosystem that facilitates data exchange and sovereign data usage. TEAM-X aims to implement GAIA-X in healthcare, this study focuses on palliative care. Especially in this vulnerable context, identifying opinions of prospective users during development ensures that their needs as well as objectives and principles of palliative care are met. This study aims to gather perceptions and expectations regarding digital technologies in specialist palliative home care, exemplified by a proposed system. We conducted a qualitative study using semi-structured, problem-centered interviews with employees and informal caregivers in specialist palliative home care. Participants were introduced to the conceptual TEAM-X system as well as different care scenarios as impulses for possible changes and were asked about their expectations for benefits and challenges, and requirements for such a system. Transcripts were analyzed using content structuring qualitative analysis complemented by a linguistic analysis that examined personal attitudes towards technology through language patterns. Nine employees and three informal caregivers agreed to participate. Interviewees highlighted several potential benefits of the planned system, some of them addressing challenges of the current care situation, like facilitated data exchange between healthcare professionals, reduced burden on informal caregivers, and optimized care processes. Challenges included concerns about system feasibility, data handling procedures and fears that technology might compromise humaneness. Linguistic analysis revealed varying levels of technology affinity, while the relevance for care and the alignment with palliative care principles were rated mainly high. As requirements, participants emphasized the importance of maintaining humaneness in care and ensuring that technology serves as a supportive tool rather than a restrictive element. Despite its conceptual nature, the TEAM-X system elicited valuable user insights, identifying both benefits and critical requirements for successful implementation. Meeting the concrete and realizable derived requirements thoroughly, such as enhancing data security, maintaining human interaction, and ensuring user-friendliness, could enable the system to support specialist palliative home care effectively. Future research should validate these findings and explore implementation in diverse healthcare contexts.