Care to share: Four lessons we can learn from data sharing in older person care research

Abstract

Sharing data offers opportunities to make research into older person care more efficient. However, this is not yet common practice in the Netherlands. To optimally utilize the potential of data sharing, insight into factors that promote the implementation of data sharing in older person care research is important. In the TOPICS-MDS project, research data from the National Program for Older Person Care (NPO) was collected, managed and reused on a large scale. The experiences of stakeholders involved in this project can teach us more about the needs researchers have when sharing their data. For this study, we interviewed 23 people involved in different ways in data sharing in TOPICS-MDS about their experiences in the data sharing process. Thematic analysis yielded four overarching themes, which we converted into the following lessons: those who want to promote data sharing must ensure 1) visibility of the added value of data sharing, 2) trust in the database, 3) transparency of the process and 4) communication. These lessons complement the results of previous research with concrete advice. Optimizing data sharing in older person research is both promising and challenging. It requires dedication and involvement from both the researcher and the research participant, and appreciation for both.