Sunday, 8 November 2015

Do you understand what is on the Blog?

Can people with multiple sclerosis actually understand what they read in the Internet age? Moccia M, Carotenuto A, Massarelli M, Lanzillo R, Brescia Morra V. J Clin Neurosci. 2015. pii: S0967-5868(15)00514-7. doi: 10.1016/j.jocn.2015.10.003. [Epub ahead of print]

People with multiple sclerosis (MS) frequently report difficulties in finding personally relevant information on the Internet. With this in mind, the Google top-ten patient-oriented results were analysed for their overall level of readability. The most commonly visited websites required an average grade level of 11.74±1.54, and an average number of years of formal education of 12.78±1.82, to be easily understood. The average Flesch Reading Ease readability index is 45.26±7.35, a difficult-to-read score. The high educational level required to easily understand most websites worsens health inequalities, not allowing a full participation in health information and decision making.

This says that you can’t read most MS websites because they are too difficult. I guess that includes us because you often comment that there is stuff flying over your head. Sorry, we try but if we had a staff of people who translated them after we had written them, then they may be more accessible. Easy way to may the posts easier to read is to read more. There are many gold nuggets on the blog.

Where were we i've paid google to to get us noticed...I'm joking but the search was multiple sclerosis and not multiple sclerosis research otherwise they would have found us.

However, it is quite funny that a paper taking about readability is almost unreadable. 


I have been around for a while and I have no clue what a grade level is. Is this an American grade level?

Quick look on Wiki and that says grade 12 = Twelfth grade, Senior year, or Grade 12 are the North American names for the final year of secondary school. In most countries students then graduate at age 17 or 18. So that's a Senior

When do you go to school? I think I was 5 so that makes you need to be 18 years old to understand, but Sweden I think start later so 19 and as for a Flesch Reading Index I have no clue either.
 

Apparently 45 is difficult and set at University level Pro high school level. MS Society in UK was nearly 50.

So do we fail....can do better?

If so in what way



26 comments:

  1. The core problem is that researchers don't have a full understanding of what MS is i.e. cause, mechanisms... The problem I have with many research papers is that they don't fill me with confidence. My professors at University knew everything about their subject (a specific part of history). MS professors are still in the domain of theories - t cells or b cells, virus as cause, neurodegeneration - primary or secondary... Many of the research try to bamboozle us with names of different cells cd 8, or t helper cells..l), but this is to disguise their own ignorance / immaturity in understanding this complicated / multi-faceted disease. EAE is use to bamboozle us more. So the issue isn't about MSers being too thick to understand the research posted on MS blogs, its that the research posted is often confusing because the writers don't understand the disease. I like graphics produced by Prof G e.g. Tube Map. We really need a graphic showing how MS starts and the processes. However, after 50 years of research, I don't believe we are that near to producing such a definitive graphic which would get the approval of 90% of MS researchers.

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    1. My professors at University knew everything ......I doubt it

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  2. In the USA 12th grade is the last year of High School, generally 17 - 18 years of age. In the USA many trends have happened in large part due to the materialistic nature of full blown capitalism and sheer numbers / magnitude thereof is all respects. For example, many are completely caught up in the more transient impacts of technology. Mobile, gaming, internet, television... all transient. Starting late in the 10th grade or in 11th grade it is not unusual for children here to do a 180 degree spin away from independence. The pressure of what's coming, bills, housing, food all of it becomes overwhelming and moving them towards independence is like trying construct a pyramid in Egypt with no foundations. The rock's do everything to not move. Intentionally loosing jobs, creating scenarios etc. Yet often acting before thinking of any ramifications.

    Doing better per se, at least with youth here in the USA is a formidable task. The separation in base mental foundation value sets across segments of the youth and indeed parents, peer groups and the incestuous pursuit of money, beauty, entertainment (and then some) is formidable to overcome.

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  3. I am learning. It takes time. Rome was not built in a day (I believe a large portion did burn in one however via Mr. Nero).

    Its like anything. Do not understand it? Want to? Then learn.

    With some people... for example folks who have MS brain atrophy is a part of the course of the disease. With people who are healthy it is a choice :)

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  4. I abhor the suggestion that understanding things is difficult for MS patients. In Australia at least, 12 years of schooling is compulsory and on top of that, in 2006 59% of Australians had a post high school educational qualification. The MS population is just as diverse as the general population. Some will take an interest and work hard to understand things that they are not familiar with, some will leave it all to the doctors, some will seek translations of scientific journals and some will read the journals themselves. Who is this blogging wanting to appeal to? Every person with MS? At least 50% of the MS population? When I started researching MS 10 months ago, almost everything went over my head - and I'm a professional with 5 years post high school university education. 10 months into reading journal articles about MS, about 20% of direct academic content goes over my head and I understand about 95% of the content on this website. Of course I don't have MS, my partner does, but we have read the articles and the journals and other content together. My partner has 3 years post high school university education and has worked as a sessional university tutor, which is how we (or she) have access to academic journals regarding MS. I believe she understands the same amount of content that I do. I know MSers who are more cleverer than I am and I know some people with MS who can't figure out how to tie their own shoe laces - just like I know people without MS who much smarter than I am and some who I am not sure how they get by in life. With all due respect in the world, academics are not always the best at practical world things or at communicating information. Having said that, this blog does an amazing job and it would be sad to see it be "dumbed" down the way that the (at least Australian) MS societies have dumbed down their content. It is utterly unhelpful. What can help is to have a dedicated place on the blog aimed at answering people's questions in an easy to understand way where they are free to pose them - of course, that would require a lot of work and patience (sometimes the same questions will get asked 10 times a day). I use MStranslate forum for this type of Q and A but would be so good to have something here as well - rather than worrying about what some unreadable peace of research says or doesn't say about the capacity of MSers to read complex information.

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  5. I find it really helps to explain things when the Prof writes a couple couple of paras of comment.

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  6. I am extremely surprised that the MS Society's website is around 50 as I find it pretty simplistic and lacking the detail I'm often looking for.

    I studied science to A level standard (US grade 12) and in terms of this blog, the posts I most often struggle to understand are those concerned with cellular level interactions (types and sub-types of immune and CNS cells, antibodies, etc). I like to understand something at the macro level then how the various elements at micro level fit together to produce the whole. I feel at the moment I can't connect the dots but have a simplistic understanding of the big picture. I have looked around for books /websites to help me bridge the gap but haven't yet come across anything suitable.

    I'd love MS information (produced by the charities or background info on this site) to allow people to drill down from a top-level / simple (but not patronising) explanation into deeper / more complex descriptions and theories. I agree with Anonymous 9.00am that graphics such as the MS "Tube Map" are very powerful and would like to see more use made of appropriate diagrams alongside the sometimes oblique and dense texts.

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    1. The MS Society website is really quite basic. A useful starter site but no more. I come on here when seeking more detailed information. Some of the terminology does go over my head, but the more I read the more I understand. I really wouldn't want the charities dumbing it down any more than they do, It's often patronising as it is. It feeds paternalism. I often look at both the professional and patient news feeds or info and although they may be talking about the same topic, the differences are stark. It does MSers no favours.

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    2. For instance when I want to know how MS will effect me the MS Trust "how will MS affect my life" page says: "Some people experience disability due to MS but this is not the case for everyone".
      Compared this to the MS Trust Professional section which says: "After 15 years with MS, about half of the population will still be independent in terms of walking and the remaining half will need help with mobility".
      So yes I would agree it can be difficult to find relevant information as patient websites are often woolly in what they write.

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    3. Re: ""After 15 years with MS, about half of the population will still be independent in terms of walking and the remaining half will need help with mobility".

      This statement needs further context; it refers to natural history data without DMTs. In the DMT era we think MSers do much better than this.

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    4. I agree with other anons; I find the other websites to be patronizing and often misleadingly biased about drugs based on who's paid who that month, but I do struggle with the basic science of cell-based and inner-cell reactions. The easier posts tend to be about either drugs in trial, which just requires a bit of math or about exercise or lifestyle changes - those I find very patronizing as surely everyone with two working neurons to rub together knows that yoga or stationary biking would be good for MSers but there's little information about what kinds of exercise programs I should be doing. Surely those programmes are included in the trials? Perhaps Barts has a physiotherapist or the like who could help us with some charts and graphics for an at-home yoga programme, or explain what sort of things are being trialed.

      Likewise, some posts about what bio-2 or bio-3 med students know about cell interaction, just basics like how mitochondria are supposed to be working in the healthy versus MSers would go a long way to understanding the more lab oriented studies. I have an advanced degree in a relatively complex scientific field in computing, and I'm sure if I could have a slightly-more-than-layman's-charts or discussion on background material I would get more of it.

      Yet another suggestion: there's a wonderful website out there that recaps in detail the process of developing campath/alemtuzumab that manages to not sugar coat the process. As an MSer diagnosed in the era of highly effective drugs, it would be great to get a layman's version of that for Tysabri and Gilenya, etc. The drug companies I do not find trustworthy, especially Biogen.

      Overall, I appreciate Barts staff work on posting frequently, with links back to the primary source papers, and the commentary in purple on whether or not it is worth my time. Your commitment to presenting the raw science is why this site is my first resource. Thanks!

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  7. Slightly ironic that the commentary on the above post is riddled with spelling mistakes, sentences that don't actually make sense and a poor grasp of grammar. No offence... it is just if I had a website that was running with 5+ million views, I am pretty sure I could find sponsorship to hire a part-time editor.

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    1. editing takes time. commenters and i assume bloggers get interrupted half way through an entry at least 3 times, and post sometimes without reading it. does that make the commenters' or bloggers' views unworthy of being read? would it look prettier if they paid someone (noting that I don't believe anyone is getting directly paid to actually contribute to this blog)? ps. i intentionally didn't capitalise the first letter of each sentence. i'm lazy like that.

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  8. Nobody here wants you to dumb it down. The great thing about the Internet is that if I think it's important to know the difference between efferent and afferent nerves, I can go look it up.

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  9. I agree with 2:16:00- don't dumb down the content. I have a BS in Biology, and I understand the cell biology presented here, and I also like the summaries presented by Prof G and MD. Keep up the good work!

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  10. I understand that this site has a wide audience from patients to neurologists, so it is difficult to pitch. I love this site. Has anyone thought about putting an immunology course on Coursera? I would enjoy that.

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    1. This is a good idea. A Barts Coursera on immunology in MS would be awesome.

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  11. Please keep this blog at its present level - oversimplification is annoying, often misleading, or downright wrong.

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  12. You lost me when you wrote: "do you understand.....?" :-) Immunology is complicated. Millions of years in the evolution of the vertebrate immune system leads to complexity. If it were simple there would be no questions only answers......deal with it.

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  13. I like the blog exactly the way it is. Before going to Law School here in Brazil, I studied about 02 years Biology. I always liked Biological Science, guess fantastic. So when I found by chance the Blog on the internet I was surprised at the level of content and clarity of the publications made daily. For me it is wonderful being here because we found credible information about what is being done in basic research about MS and about the treatments of the disease. Because if they are behind the term "multiple sclerosis" on the internet will find a lot of "panacea" ... I take the space of Blog to review concepts learned there in the Biology School, also see it as a form of stimulus the cognition, memory, etc. .. Please continue with the way he's Blog ...

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  14. If you want an honest and disconnected appraisal then there is a problem.

    While I for example am willing to do the Click-work and reading to try and learn clinical speak you have to ask yourselves at Barts what do you wish your target audience to be?

    If you want "speak" towards researchers or those who wish to dive deep into clinical speak then you are targeting mainly a research or well-informed MS community.

    If however you wish touch the people who actually endure living day to day with the disease, educate them, activate them, change the course via the informed patient is the activated patient then changes are in order.

    I would not suggest simplification as when they read from other resources that have clinical speak they are then still in the dark. Instead, the site need explain clinical speak as it unfolds. Now the value to the people who have MS is greatly enhanced and quite frankly it is needed.

    At the sametime realize some things happening. The systems, care, providers, pharma and the real activated NPO's are realizing that a ton of the NPO's are causing more people with MS problems .vs. solutions. A simple look at finance sheets shows many of the NPO's are feeding on MS (as well as others) causing the entities who actually do fight, make a difference not only problems in attaining better funds but actually holding back progress.

    As an example, take the Med's issue that Barts has hammered at. How many webs slapped that out "front page". We did, even caught some flack for it albeit an ocean between us. We've never asked any entity for a red cent.

    Barts realizes its responsibility in this site is towards MS research and MS patients. Our responsibility we consider broader, all ends top to bottom hence while many a site reports a lady taking an HIV med walks gets completely irresponsibly promoted all over the globe we do not pursue.

    If Barts wants do (IMHO) the right thing(s) and in fact smart things then help inform the patients about clinical speak as well in everyday terms. At the sametime do not throw Barts credibility behind any entity short of the mainstream fighter over there because that is the entity that can and will make things happen .vs. those that go, "See... we are with them". You are leaders. Work with the leaders. Not those who are too frightened to get in the face of the powers that be because of their own self-interests.

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  15. I have an MSc, but not in immunology or genetics, so when the real hard stuff kicks in on such topics, I glaze over and move onto the next post. The English is sometimes pretty raw and very rough around the edges - but that's what one might expect from a busy researcher who has a lot of other stuff to do. I don't see that as a problem in as much as it gives a flavour of "straight from the horses mouth". It adds to a feeling of straight talking, frankness, of informaton being unadulterated. That's a good thing. But for me personally, I often find I simply don't have the time to wade through it all. I am tending more and more to skim to the bits about progressive MS, and otherwise look to the MS Trust for a fairly reliable, compact summary of what's going on. If I'm honest, it comes to a point where I feel helpless/hopeless in reading about the ups and downs of progressive MS research/drugs, and I feel less and less inclined to spend my life hours on it. That's just me - there's nothing I would suggest you must change.

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  16. For me this blog is not an easy read. But I check it daily because it offers something different than other MS sites. Most I would say don't provide much in-depth information, so I come here for that. Here I read sentences where I didn't know half the terms. But I read them again, I searched online, so I understand and it does become easier with time. Understanding requires knowledge I would say (most of times? don't quote me on this) and people who are interested, will try to know more so they comprehend more.

    If there's one little suggestion I would have, a bit of editing, so there are more clear paragraphs, but other than that... well, more. I wouldn't want 'dumbed down' posts, I do want detailed information and I like the way it's presented here. If someone doesn't understand I think they can ask, and I'm pretty sure they will get an answer, that's another great thing about the blog. But we weren't talking about what's good right? So, a bit more editing and more posts per page?

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