Multiple Sclerosis In-Deep

Our website, Making Sense of MS Research, provides summaries of independent, high-quality research (from the Cochrane Collaboration) about MS treatment options for people with MS and their family members.

To create the site, we partnered with MS Australia and researchers in Australia and Italy to undertake a qualitative exploration of online health information-seeking and extensive user testing of web materials. Consumers were involved in every step of the project, both as participants and members of a consumer advisory committee.

Below we describe the research stages that underpinned the website development, and the results of the evaluation.

IN-DEEP stands for Integrating and Deriving Evidence, Experience and Preferences.

Research stages

Stage Aim Method Key findings / outcomes
1

To explore with people with MS and their families how they find, assess and use health information.

We conducted 5 focus groups with people with MS, family members of people with MS and MS nurses in three Australian States followed by an online forum with people with MS and family members.  We spoke with 65 people in total. People with MS are and their family members are looking for unbiased, practical, clear and current information about MS treatments.  The Internet is a valuable information resource, but many people are sceptical about the quality of health information online.
2 To develop a template for writing summaries of the latest research from The Cochrane Library in a format that enables people using the information to make it meaningful for their own circumstances. We developed draft evidence templates drawing on Stage 1 findings and international best practice for explaining medical research in plain language.  We tested these templates with 16 people (including people with MS, family members, health professionals and MS Australia staff). Overall the feedback was positive, with many helpful suggestions made for improvements.   The importance of presenting numerical information in a range of formats, and layering the information from key messages to the detailed answer was reinforced.  The inclusion of web links to other high quality information sources was well liked.
3 To develop a model for presenting research summary infofmation online aimed at people with MS and their families Develop and user test a website incorporating the evidence summaries of MS reviews from The Cochrane Library. Website launched October 2012.
4 To evaluate the model to ensure that it meets people's needs. Website was launched with an evaluation questionnaire, developed specifically for the project. Participants responded positively to the website, finding the website easy to navigate with information easy to understand. More than two thirds of respondents felt they could now make an educated decision about the treatments

Project team

Role Person
Chief investigator Dr Sophie Hill, La Trobe University, Victoria, Australia
Co-investigator Dr Michael Summers, MS Australia, Victoria, Australia
Co-investigator Dr Graziella Filippini, Fondazione IRCCs Instituto Neurologico "Carlo Besta", Italy
Co-investigator Ms Sue Shapland, MS Australia National Services Leadership Group, WA, Australia
Co-investigator Professor Richard Osborne, Deakin University, Victoria, Australia
Research officer Ms Annie Synnot, La Trobe University, Victoria, Australia

Publications

Posters

Contact

Annie Synnot
Research Officer
IN-DEEP Project

T: +61 (0)3 9479 6014
F: +61 (0)3 9479 5977
Email: a.synnot@latrobe.edu.au

External resources