Open AccessProducing an evidence‐based treatment information website in partnership with people affected by multiple sclerosis
Author(s) -
Synnot Anneliese J.,
Hawkins Melanie,
Merner Bronwen A.,
Summers Michael P.,
Filippini Graziella,
Osborne Richard H.,
Shapland Sue D.P.,
Cherry Catherine L.,
Stuckey Rwth,
Milne Catherine A.,
Mosconi Paola,
Colombo Cinzia,
Hill Sophie J.
Publication year - 2018
Publication title -
health science reports
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.462
H-Index - 7
ISSN - 2398-8835
DOI - 10.1002/hsr2.24
Subject(s) - general partnership , trustworthiness , health professionals , psychology , information seeking , information needs , population , internet privacy , personally identifiable information , confusion , computer assisted web interviewing , medicine , medical education , health care , social psychology , computer science , world wide web , business , marketing , political science , environmental health , computer security , finance , library science , psychoanalysis , law
Background and Aims In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. Methods A 2‐phase mixed‐methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper‐based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. Results Eighty‐three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source. Conclusion We describe a partnership approach to developing online evidence‐based treatment information, underpinned by an in‐depth understanding of consumers' information needs.