Communicating Ethically Relevant Practices of Patient Registries: An Interview Study on the Information Needs of People with Multiple Sclerosis

Patient registries play a key role in research on chronic conditions like multiple sclerosis (MS), but their success typically depends on patients’ willingness to share data. Information provided about ethically relevant registry practices may strongly influence their willingness. This study explores what information about ethics practices people with MS consider important when deciding whether to contribute data to a patient registry, and how they prefer this information to be communicated. We conducted semi-structured online interviews with 21 people with MS and patient representatives from nine European countries. The interview guide first addressed general information needs and then seven predefined ethically relevant topics. The topics registry governance, registry funding, data handling, and use-and-access procedures were adapted from the literature, while communication, access, and rewards for contributing data provided contextual and practical insight. They also served as the initial coding categories for directed qualitative content analysis, after which categories were refined and reorganized during analysis, and subcategories were inductively developed. We found that trust emerged as a cross-cutting factor. Participants required less information about registry practices when they trusted the registry or associated parties and preferred registry communication through trusted intermediaries. When deciding whether to contribute data to a patient registry, participants emphasized the importance of clarity about how the data will be used, who would have access to it, and what privacy protections are in place, while information preferences for technical details regarding data use and access varied widely. Feedback on personal or aggregate results was highly valued and seen as types of personal and communal benefits for participating. In conclusion, patient registries should adopt flexible communication strategies that balance transparency and accessibility. Building and maintaining trust, potentially through trusted affiliates like universities or patient organizations, appears central to properly inform (potential) registry participants about ethically relevant registry practices.