TY - JOUR
T1 - Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis
AU - Synnot, Anneliese J.
AU - Hawkins, Melanie
AU - Merner, Bronwen A.
AU - Summers, Michael P.
AU - Filippini, Graziella
AU - Osborne, Richard H.
AU - Shapland, Sue D.P.
AU - Cherry, Catherine L.
AU - Stuckey, Rwth
AU - Milne, Catherine A.
AU - Mosconi, Paola
AU - Colombo, Cinzia
AU - Hill, Sophie J.
N1 - Funding Information:
Financial support for this study was provided in part by a grant from Multiple Sclerosis Research Australia (Grant number 00025) and MS Australia ACT/NSW/VIC. Richard Osborne was funded, in part, by a National Health and Medical Research Council Senior Research Fellowship (APP1059122). Graziella Filippini, Paola Mosconi, and Cinzia Colombo were funded in part by the Italian Multiple Sclerosis Foundation (Grant number 2010/R/19). The funding agreement ensured the authors' independence in designing the study, interpreting the data, writing, and publishing the report.
Publisher Copyright:
© 2018 The Authors. Health Science Reports published by Wiley Periodicals, Inc.
PY - 2018/3
Y1 - 2018/3
N2 - 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.
AB - 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.
KW - Cochrane
KW - consumer participation
KW - evidence-based treatment information
KW - health education
KW - multiple sclerosis
KW - patient and public involvement
KW - systematic review
UR - http://www.scopus.com/inward/record.url?scp=85061691013&partnerID=8YFLogxK
U2 - 10.1002/hsr2.24
DO - 10.1002/hsr2.24
M3 - Article
C2 - 30623063
AN - SCOPUS:85061691013
SN - 2398-8835
VL - 1
JO - Health Science Reports
JF - Health Science Reports
IS - 3
M1 - e24
ER -