Open Access Study protocol

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

Sophie Hill1*, Graziella Filippini2, Anneliese Synnot1, Michael Summers13, Deirdre Beecher2, Cinzia Colombo4, Paola Mosconi4, Mario A Battaglia5, Sue Shapland6, Richard H Osborne7 and Melanie Hawkins7

Author Affiliations

1 Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Melbourne, Australia

2 Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Review Group, Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico, C. Besta, Via Celoria, Milan, Italy

3 MS Australia, The Nerve Centre, Melbourne, Australia

4 Laboratory for medical research and consumer involvement, Istituto di Ricerche Farmacologiche Mario Negri, Via La Masa, Milan, Italy

5 Associazione Italiana Sclerosi Multipla, Via Operai, Genoa, Italy

6 MS Australia, Perth, Australia

7 Public Health Innovation, Population Health Strategic Research Centre, School of Health and Social Development, Deakin University, Melbourne, Australia

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BMC Medical Informatics and Decision Making 2012, 12:20  doi:10.1186/1472-6947-12-20

Published: 16 March 2012

Abstract

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.

Keywords:
Evidence-based patient information; Consumer involvement; Knowledge translation; Multiple sclerosis; Internet; Self-management; Preferences