Perceived Barriers and Facilitators for Sharing Data with an International MS Rehabilitation Repository

Background: The Progressive Multiple Sclerosis Alliance (PMSA) funded an infrastructure award entitled “Towards a Shared Data Repository to Enhance the Standards of Rehabilitation in MS: Feasibility and Capacity Building”. This project prepares the development of an international MS rehabilitation repository infrastructure to retrospectively assemble databases describing and investigating effects of different rehabilitation interventions and measures, and prospectively to stimulate MS centers, researchers, and clinicians to collect and share data with uniform outcome measures for specific research questions.

Objectives: To identify barriers and facilitators for sharing data by consulting key stakeholders.

Methods: Two focus groups (FG) applying the nominal group technique were conducted in 2014, one in Europe (RIMS SIG Mobility meeting) and one in the United States (International Symposium on Gait & Balance in MS). The purpose of each FG was to identify and prioritize potential barriers and facilitators to sharing data with the proposed registry.  FG data were analyzed individually and then combined through qualitative content analysis and quantitative combined ranking to produce a group summary. A project specific on-line questionnaire was written, based on the initial results of the combined FG analysis, to further explore barriers and facilitators from a broader professional audience invested in MS rehabilitation. 

Results: 21 individuals participated in the FGs, 12 in Europe and 9 in the US.  66.7% were primarily engaged in research practice and 76.2% worked primarily in MS.  The combined FGs identified the following top 10 challenges and motivators to sharing data: 1) database control and management, 2) ethical and legal concerns, 3) data quality standards, 4) time, effort and cost for contributors and users, 5) clinical decision making and best practice, 6) data uniformity within the database, 7) sustainability, 8) comprehensive and deeper analysis, 9) collaboration and 10) identifying research needs. The on-line questionnaire will be sent out in early 2015, gathering additionally information on barriers, facilitators, potential needs and solutions.

Conclusions: These results will contribute to the decision-making process as to whether an international MS rehabilitation repository is feasible and the conditions under which key stakeholders would contribute.  Additional information: www.MsRehabRep.org