Thursday, 4 September 2014

A brief Introduction

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 findassess and integrate treatmentinformation to manage their health.


Abstract

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.

DESIGN:

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.
RESULTS:
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.
CONCLUSIONS:
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.

5 comments:

  1. Hi arie, allow me to post a list I assembled 2 years ago when I just got diagnosed. (I have no medical background, I'm a librarian, and it is thus more formally then medical-scientifically assembled).
    Nowadays, my only daily visit is the Barts-blog. (too many daily 'breakthroughs' elsewhere :)
    Perhaps it's useful to others
    regards

    18/09/2013 edited mistakes out and added Google News-MS in.

    I searched the Internet ferociously since being diagnosed a year ago, here are some news links I found, please comment about things I missed, thanks!

    visits to http://www.ncbi.nlm.nih.gov/pubmed (for medical-scientific publications) and http://www.ema.europa.eu/ema/ and http://www.fda.gov/ (for governamental approvals) and
    http://multiple-sclerosis-research.blogspot.co.uk/ andhttp://www.msnewschannel.com/ (for daily news regarding MS) are obvious

    not sorted list.

    http://news.google.com/news/section?pz=1&cf=all&ned=nl_be&hl=en&q=multiple+sclerosis
    http://www.msbuzz.org/
    http://pipes.yahoo.com/pipes/person.info?display=pipes&guid=6MGZ5O4SB5HW6TIK4Y3FPMTBKE
    http://www.msdiscovery.org/news/new_findings
    http://www.mstrust.org.uk/research/updates/
    http://www.msfocus.org/news.aspx
    http://pharmaceuticals.einnews.com/search/multiple%20sclerosis/?search[]=news&search[]=press&search[]=events&age_h=&headlines_only=yes&show_abstract=yes&order=date&search_site= (paying service, but you can c/p the headlines into Google, etc..)
    http://multiplesclerosis.net/research/
    http://www.mssociety.org.uk/ms-news
    http://www.ms-uk.org/index.cfm/MSnews
    http://www.medicalnewstoday.com/sections/multiple_sclerosis/
    http://www.sciencedaily.com/news/mind_brain/multiple_sclerosis/
    http://multiple-sclerosis.alltop.com/
    http://nationalmssociety.org/news/index.aspx
    http://www.msif.org/global-ms-research/latest-ms-research-news/
    http://www.news-medical.net/health/Multiple-Sclerosis-(MS).aspx
    http://ms.about.com/
    http://www.examiner.com/multiple-sclerosis-in-national/mike-szymanski
    http://www.msra.org.au/news

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  2. It's the interpretative quality of this blog that gives it real value. Making sense of MS information is not easy for those of us who never got beyond O Level science. I also really appreciate Prof G's occasional insights into his clinical practice, because they help inform me about what I should be expecting/demanding from my neuro. I regard the blog now as a one-stop shop: it's not too much information for me and I don't need to scour other sites (as I used to). My only concern is that the contributors may be burning themselves out with the effort it must take to produce this blog on a daily basis. Hope I'm wrong!

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  3. Welcome Arie, and thank you so much for dedicating your education to helping those of us with multiple sclerosis!

    On the question, I completely agree with Anonymous @ 11:00 PM.

    I do find it difficult to find practical and accurate MS information on the internet. My main source of information is this blog because you provide a great resource on recent research along with expert interpretation. There are unfortunately a lot of psuedo-science MS sites on the internet, and so I need to read everything with a very skeptical eye. Luckily, this blog not only has expert interpreters but almost always cites published research, which gives me more comfort in the information presented.

    I believe there are two primary information needs for those of us with MS:

    (1) The biggest need is up to date *synthesis* of research. This blog does an outstanding job at summarizing the individual studies and some synthesis, but I feel many people with MS need a concise resource on subjects like choosing a DMT. This is complex even just analyzing the Phase II & III studies, but it's even harder when taking account of extension studies, sub-group analysis, theories on therapeutic windows, effectiveness ramp-up time, etc.

    (2) The second information need (and maybe more complex) is guidance on topics that are not yet clinically proven. A recent example is the possible correlation with salt consumption and MS activity. Researchers can easily state a study is not definitive because it's not a true dual-blind placebo study, but those of us with MS do not have the luxury of waiting for perfect studies. How seriously should we take an observational study? Is the risk/reward high enough that it makes sense for us to take action even if it's not "proven"? This dilemma comes up in many places.

    As for blogging, I am very much interested in blogging on MS, but this blog has been so useful that I'm not confident I could add significant enough value to start my own site. However, I do lurk on the major MS sites and try to provide some summary of my knowledge on DMT's, MS risk factors, etc. I've read dozens (hundreds?) of research papers at this point, so I definitely enjoy sharing the knowledge I've learned with my fellow MSers.

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  4. Thanks for your comments which are all really insightful.

    Re: How seriously should we take an observational study?

    I agree; this can sometimes be tricky to work out.

    As with all studies there are advantages and disadvantages to observational studies.

    The main advantage is that they are more likely to be representative of the real population than case-control studies.

    The disadvantages include the fact that they tend to be expensive and require long study durations and large study samples which can make them unpopular with researchers. There is also the problem of loss to follow up.

    I find it easier to critique a paper if there is a commentary or editorial on the study which has been written by an expert in the field. The other way is to look at the discussion and see what the authors have felt are the limitations of the paper. I will put a post out tomorrow on the various advantages and disadvantages of different types of studies as this may be helpful.

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