Sources of Discovery, Reasons for Registration, and Expectations of an Internet-Based Register for Multiple Sclerosis: Visualisations and Explorations of Word Uses and Contexts

摘要

Internet-registers are having an increasing role in healthcare informatics. Understanding the motivations and expectations of people choosing to use such registers is important, and these aspects were investigated regarding people with MS who registered on the UK MS Register. An objective was to explore relationships between these factors and the source from which participants first learned about this Register, as this is relevant to how registers are publicised. The responses from a large number of participants (N = 2,675) to questions about the source by which they discovered the Register, why they registered, and how they thought it should be used, were qualitatively analysed using a 'word cloud 'technique and traditional content analysis strategy to provide a more detailed analysis. The significant trends that emerged from these analyses were the importance to the participants of: studying MS; raising awareness about MS; improving and developing services and policies regarding MS; assisting others with MS; the Register as a resource for people with, and affected by, MS; the Register as an aid to themselves; and it being an open resource for all professionals and government bodies.