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.
|Stage||Aim||Method||Key findings / outcomes|
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|
|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|
- Synnot A, Hill S, Garner KA, Summers MP, Filippini G, Osborne RH, Shapland SDP, Colombo C, Mosconi P (2014) Online health information-seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health. Health Expectations; early online
- Synnot A, Hill S, Summers M, Taylor M. 2014. Comparing Face-to-Face and Online Qualitative Research With People With Multiple Sclerosis. Qualitative Health Research, 24: 431-8
- Colombo C, Mosconi P, Confalonieri P, Baroni I, Traversa S, Hill SJ, Synnot AJ, Oprandi N, Filippini G. 2014. Web search behavior and information needs of people with multiple sclerosis: the qualitative stage of the Italian IN-DEEP project. Journal of Medical Internet Research 3:e12
- Hill S, Filippini G, Synnot A, Summers M, Beecher D, Colombo C, Mosconi P, et al. Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol. BMC Medical Informatics and Decision Making 2012 12:20.
- Synnot A, Hill S, Summers M, Filippini G, Garner K, Osborne RH, et al. 2012. Providing evidence-based health information for people with MS: The IN-DEEP project update. Multiple Sclerosis Journal, 18: 691-696.
- Synnot AJ, Hill S, Beecher D, Colombo C, Filippini G, Mosconi P, et al, 2011. The Internet and treatment information-seeking by people with multiple sclerosis. The International Journal of MS Care 13(Suppl 3):58
- IN-DEEP Project Plan (2010 Cochrane Colloquium) [PDF 160KB]
- Step 1 Findings, CMSC Montreal June 2011 [PDF 196KB]
- Treatment Information Seeking, (2011 Cochrane Colloquium) [PDF 367KB]
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