Multiple Sclerosis 'IN-DEEP' project
Integrating and deriving evidence, experiences and preferences (IN-DEEP): Developing research-based health ifnormation applicable to decision making and self-management by people with multiple sclerosis (MS)
The IN-DEEP project is an international collaboration between researchers, MS Societies and consumers with MS. It will develop a new model for Australia and internationally for developing high quality health information for people with MS and their families. IN-DEEP is being conducted concurrently in Australia and Italy. Funding for the 2.5 year project in Australia has been provided by MS Research Australia (MSRA) and MS Limited (ACT/NSW/VIC).
Description
Rationale
Use of the internet for health information has increased rapidly. Whilst the principal source of information for most people is their specialist or GP, increasingly people are using the internet to stay abreast of research, check media claims of treatment benefits, 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. People also need to know how to assess the information's relevance. The research will seek to find solutions to these problems.
| Stage | Aim | Method |
|---|---|---|
| Step 1 | To explore with people with MS and their families how they find, assess and use health information | Conduct focus groups in Victoria and Tasmania, followed by an online forum |
| Step 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 | Run workshops/panels in Victoria and Tasmania (subject to numbers) for people with MS, their carers, MS staff and health professionals |
| Step 3 | To develop a model for presenting research summary infofmation online aimed at people with MS and their families | Develop a research protocol and guidelines. The information output could take the form of an evidence bulletin |
| Step 4 | To evaluate the model to ensure that it meets people's needs | Conduct an online survey |
| 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, Western Australia, Australia |
| Co-investigator | Prof. Richard Osborne, Deakin University, Victoria Australia |
| Research officer | Ms. Annie Synnot, La Trobe University, Victoria, Australia |
Progress
IN-DEEP commenced in October 2010.
- Between October 2010 and February 2011 we conducted four focus groups with people with MS and family members of people with MS (three in Victoria and one in Tasmania). In March 2011 we conducted an online forum that included people with MS and their family members in Victoria and Tasmania but was also open to people in other states if they wanted to participate. Step 1 involved 60 participants. Some of our Step 1 findings were presented in a poster presentation at the Consortium of MS Centres (CMSC) annual meeting in Montreal, Canada in June 2011. This poster was awarded the Patient and Family Education Award for Best Poster. The full Step 1 findings will be made available once completed.
- Step 2 will commence once Step 1 is finalised. We will hold panels will be held in the second half of 2011.
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