Hi – My name is Arie Gafson and I am a clinical research fellow working with Team G.
I’ve just started a PhD looking for potential biomarkers in MSers that can help predict response to DMTs. The idea is to find a quick and reliable way to predict if an MSer is likely to respond to their medication. If we could do this, we would avoid keeping people on treatments that may not necessarily work for them and which may expose them to risks that they could otherwise avoid.
I’ve worked with the team for the last few years whilst I was a medical student and a junior doctor. I’m hoping to become a regular blogger and I would welcome any ideas about topics that people are interested in hearing about.
On the subject of blogging I came across the following paper a couple of days ago and I thought it was appropriate as an introductory post (see bottom of post). This study was undertaken by groups in Italy and Australia who were trying to make MS research accessible and meaningful to MSers.
The group highlighted a number of issues that MSers face when trying to use the Internet as a source of information. MSers in their focus groups felt overloaded with the information on the web and yet found little on the topics they really wanted to know about. They also found that MSers can feel sceptical about the quality of the information available and that it can sometimes be depressing and overwhelming. Interestingly, the most popular reason people accessed MS information was to learn about currently available medicines and therapies. Many were also interested in searching for practical and lifestyle information from both healthcare professionals and other MSers.
The researchers found that the most trusted sources of information for MSers comes from health professionals and other MSers themselves who are seen as unbiased. The focus group expressed a desire to engage in a ‘research partnership’ with their health professional. Clearly, this blog is a good example of a healthy ‘research partnership’, but is there more we can do to improve this?
Do you struggle finding the information you need on the web?
What are your main sources of information and do you generally trust what you read?
Do you blog or would you be interested in becoming a blogger in order to educate other MSers about what helps and what doesn’t?
Online health information seeking: how people with multiple sclerosis find, assess and integrate treatmentinformation to manage their health.
BACKGROUND AND OBJECTIVE: The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.
Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame.
Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-relatedinformation, was important to many. Many participants were keen to engage in a ‘research partnership’ with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term ‘self-regulation’ to capture the variations in informationseeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS.
People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence-based consumer web site based on summaries of MS Cochrane reviews.