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Presenting evidence-based health information for people with multiple sclerosis : the IN-DEEP project protocol

Hill, Sophie, Filippini, Graziella, Synnot, Anneliese, Summers, Michael, Beecher, Deirdre, Colombo, Cinzia, Mosconi, Paola, Battaglia, Mario A., Shapland, Sue, Osborne, Richard H. and Hawkins, Melanie 2012, Presenting evidence-based health information for people with multiple sclerosis : the IN-DEEP project protocol, BMC medical informatics and decision making, vol. 12, no. 20, pp. 1-8.

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Title Presenting evidence-based health information for people with multiple sclerosis : the IN-DEEP project protocol
Author(s) Hill, Sophie
Filippini, Graziella
Synnot, Anneliese
Summers, Michael
Beecher, Deirdre
Colombo, Cinzia
Mosconi, Paola
Battaglia, Mario A.
Shapland, Sue
Osborne, Richard H.
Hawkins, Melanie
Journal name BMC medical informatics and decision making
Volume number 12
Issue number 20
Start page 1
End page 8
Total pages 8
Publisher BioMed Central
Place of publication London, England
Publication date 2012
ISSN 1472-6947
Keyword(s) evidence-based patient information
consumer involvement
knowledge translation
multiple sclerosis
internet
self-management
preferences
Summary Background - Increasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.

Methods - This project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).

Discussion -
This project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.
Notes This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Field of Research 111403 Paediatrics
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2012, The Authors
Persistent URL http://hdl.handle.net/10536/DRO/DU:30045485

Document type: Journal Article
Collections: Population Health
Open Access Collection
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Created: Wed, 23 May 2012, 10:44:51 EST by Jane Moschetti

Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.