This project will create a new model for developing high quality health information for people with MS and their families. The use of the Internet for health information has increased rapidly. Whilst the principal source of information for most people is their specialist or general practitioner, increasingly people are using the Internet to stay abreast of research, check claims to treatment benefits made in the media, and supplement medical advice between consultations.
For people to be able to manage their health, information needs to be of high quality, from independent sources, and based on reliable and up-to-date evidence. However, people not only need research information but they need to know how to assess its relevance and examine how it relates to them personally. The research will seek to find solutions to these problems.
In a four-stage project, the team will first explore with people with MS and their families how they find, assess and use health information. In the following stages, the team will develop a template for writing summaries of the latest research in a format that is applicable to, and meaningful for, people with MS and develop a model for presenting this information on the internet.
In the first stage, people with MS and their families reported that they are looking for unbiased, up-to-date, practical and personally-applicable treatment information about MS. Medical-expert sources of information (health professionals, MS societies) were frequently described as the most trusted but many people described using a range of sources, including other people with MS. While Internet use was high, many were sceptical about the quality of online information and uncertain how to assess this.
Using information from the first stage of the project, the team then developed website formatting and templates for research descriptions. Formal and informal feedback on these templates was sought with the IN-DEEP consumer advisory group, people with MS, family members, health professionals and MS Australia staff. This feedback was then used to refine and finalise the research descriptions and website. The Making Sense of MS Research website was officially launched in October 2012 and can be viewed at makingsenseofmsresearch.org.au.
From October to December 2012 the website received nearly 5,000 visits, of which 73% were new visits. The website was also evaluated using an online survey. Completed by 58 people, the survey showed that overall the web site was positively received. Most people found it easy to navigate and the information easy to understand, balanced and helpful for making decisions. While the MS treatment information presented was appreciated, many people wanted more MS treatments covered, particularly the newer ones. Over time, it is hoped this web site will grow. The research undertaken in relation to the website resulted in four publications (please see below).
*Synnot, A, Hill, S, Summers, M and Taylor, M. Comparing Face-to-Face and Online Qualitative Research With People With Multiple Sclerosis. Qualitative Health Research (epub ahead of print).
Hill S, Filippini G, Synnot A, Summers M, Beecher D, Colombo C, Mosconi P, MA Battaglia, Shapland S, Osborne RH, Hawkins M. 2012. Presenting evidence-based health information for people with multiple sclerosis: The IN-DEEP project protocol. BMC Medical Informatics and Decision Making, 12:20.
Synnot A, Hill S, Summers M, Filippini G, Garner K, Osborne RH, Shapland S, Beecher D, Mosconi P, Colombo C. 2012. Providing evidence-based health information for people with MS: The IN-DEEP project update. Multiple Sclerosis Journal, 18: 691.
Synnot AJ, Hill S, Beecher D, Colombo C, Filippini G, Mosconi P, Osborne R, Shapland S, Summers M. 2011. The Internet and treatment information-seeking by people with multiple sclerosis. The International Journal of MS Care 13(Suppl 3):58.
Synnot AJ, Hill SJ, Garner KA, Summers MP, Filippini G, Osborne RH, Shapland SD, Colombo C, Mosconi P. Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health. Health Expectations. 2014 Aug 28. doi: 10.1111/hex.12253. [Epub ahead of print] PubMed PMID: 25165024.
Updated: 1 September 2014
Updated: 06 January, 2010