International Journal of Healthcare Information Systems and Informatics, 7(3), 27-43, July-September 2012 27
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Keywords: ContentAnalysis, Discovery Sources, Expectations, Healthcare Informatics, Internet-Registers,
Multiple Sclerosis, Qualitative Analysis, Registration Motivations, Word Cloud
Sources of Discovery,
Reasons for Registration,
and Expectations of an
Internet-Based Register
for Multiple Sclerosis:
Visualisations and Explorations
of Word Uses and Contexts
Lisa A. Osborne, Swansea University, UK
J. Gareth Noble, Swansea University, UK
Hazel M. Lockhart-Jones, Swansea University, UK
Rodden M. Middleton, Swansea University, UK
Simon Thompson, Swansea University, UK
Inocencio D.C. Maramba, Swansea University, UK
Kerina H. Jones, Swansea University, UK
David V. Ford, Swansea University, UK
ABSTRACT
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 regard-
ing 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 frst 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 signifcant 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.
DOI: 10.4018/jhisi.2012070103