Article type
Year
Abstract
Background: Patients increasingly want to know the evidence behind treatments and how the research relates to them. People with multiple sclerosis (PwMS) increasingly search for information on the Internet. This creates a challenge for providing high quality health information online. The IN-DEEP project is a collaboration between teams in Australia and Italy, developing parallel projects involving researchers, neurologists, PwMS, MS societies, communication experts. Here we present the Italian project findings.
Objectives: To make high quality evidence accessible and meaningful to PwMS and their families, starting from their information needs to develop an online resource of evidence-based health information. Evidence from Cochrane Reviews of MS treatments was the initial focus.
Methods: Six focus groups and an online forum were conducted to analyse the experience of PwMS and their families in finding, assessing, integrating health information with personal values. Drawing from people’s experience, a template for an evidence-based online resource was developed by the research team and PwMS. After pilot testing, the online resource was launched with an online evaluation questionnaire.
Results: 40 PwMS and 20 family members participated in the focus groups and online forum. Information needs covered MS causes, drugs’ adverse events, new drugs and quality of life. Attitudes towards the Internet were variable: for some it was useful, others were cautious or stopped searching over time. For many, the neurologist remained the preferred information source. A modular multi-page template was developed and interferon was the first topic covered. Benefits and adverse events were included, with practical information, information on research methodology, tools to evaluate health information and personal stories. 433 respondents completed the evaluation questionnaire. Overall the website was well received.
Conclusions: The online resource is considered readable, understandable and useful by PwMS and their families. Other findings and the challenges to disseminate Cochrane Reviews will be discussed.
Objectives: To make high quality evidence accessible and meaningful to PwMS and their families, starting from their information needs to develop an online resource of evidence-based health information. Evidence from Cochrane Reviews of MS treatments was the initial focus.
Methods: Six focus groups and an online forum were conducted to analyse the experience of PwMS and their families in finding, assessing, integrating health information with personal values. Drawing from people’s experience, a template for an evidence-based online resource was developed by the research team and PwMS. After pilot testing, the online resource was launched with an online evaluation questionnaire.
Results: 40 PwMS and 20 family members participated in the focus groups and online forum. Information needs covered MS causes, drugs’ adverse events, new drugs and quality of life. Attitudes towards the Internet were variable: for some it was useful, others were cautious or stopped searching over time. For many, the neurologist remained the preferred information source. A modular multi-page template was developed and interferon was the first topic covered. Benefits and adverse events were included, with practical information, information on research methodology, tools to evaluate health information and personal stories. 433 respondents completed the evaluation questionnaire. Overall the website was well received.
Conclusions: The online resource is considered readable, understandable and useful by PwMS and their families. Other findings and the challenges to disseminate Cochrane Reviews will be discussed.