IN-DEEP - High quality health information and decision tools to help people with MS manage their health: Integrating and deriving evidence, experiences and preferences

Investigators

• Dr Sophie Hill, La Trobe University
• Dr Graziela Fiplipino, La Trobe University
• Prof Richard Osborne, Deakin University
• Dr Michael Summers, MS Australia
• The MS Australia National Services Leadership Group (NSLG), represented for the proposal by Ms Sue Shapland.

Funding

• $195,000 over 2010 - 2012

Summary

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 addition to its relevance for individuals, the project has relevance for MS non-government organisations, the professionals working with them, as well as the research community generally. This is because the state-based MS societies are moving to a service delivery model based on disease self-management.
With an increased emphasis on disease self-management for chronic illnesses generally, and for MS specifically, access to health research information and how it is utilised by people with MS and their families is a critical issue. There is currently very little research to provide principles and guidelines on how this should be done. This project seeks to develop relevant resources to meet these needs.

Progress to Date

The overall aim of the IN-DEEP project is to develop a new model for Australia and internationally for developing

high quality health information for people with multiple sclerosis (MS) and their families. In a four-stage project, we will first explore with people with MS and their families how they find, assess and use health information (stage 1). In the following stages, we 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.

Stage 1 of the IN-DEEP project is nearing completion. Between October 2010 and March 2011, we conducted five focus groups (in three different States) and hosted an online forum. We included people with MS, their family members and MS Nurses from across Australia. This information has helped us to build a picture of how people with MS and their family members find and use health information in the internet-age.

Preliminary work has commenced on a selection of research summary templates (Stage 2). These templates will be finalised in consultation with people with MS, family members of people with MS, staff and health professionals in a series of workshops to be conducted in 2011.

 

Publications

Hill et all, BMC Med Inform Decis Mak. 2012 Mar 16;12(1):20. [Epub ahead of print]
Presenting evidence-based health information for people with multiple sclerosis: The IN-DEEP project protocol. (click here to read the abstract)

 

Updated: 21/3/2012