Sunday, 27 August 2017

#NewsSpeak & #ThinkSpeak: blog rejuvenation

We need your help to rejuvenate the blog #NewsSpeak #ThinkSpeak #MSBlog

Just back from my family holiday and for the first time in a long time I feel well, have a manageable workload and have a list of things to do in the new academic year that will refocus our research and educational agenda on the things we do best. Whilst away I had a complete break from academic activities including the blog, which is why I probably feel so well. 
I read some very stimulating books, unrelated to MS and neurology, that have provided me with food for thought. 



High on the ToDo list to do is to review our blogging activity and to improve our offering. From discussions with numerous pwMS, comments on the blog and emails (thank you) we are aware that we have lost our core readership and that most of you now have problems understanding our posts. We are aware, from our web analytics, that the number of people who read the blog regularly has fallen and the number of times you come back for information is decreasing. 

Alison Thomson (designer) and Beki Aldam (writer), our public engagement gurus, have reviewed our content and blogging activity and have compared it to well-described attributes of successful blogs and have identified several issues. Alison and Beki are confident that we can reverse our decline and are planning to take us back to basics. As part of our rejuvenation, they will be re-training us in the art of writing for a lay audience. Their aim is to improve the quality and reduce the quantity, of our offering so that the majority of our readers will understand what we are writing about - 'less is more'. 

If you have any suggestions to help us please feel free to comment on the blog or send Alison and Beki an email (bartsmsblog@gmail.com). For example, one potential option is to change very little, but provide you with tools to curate our content. What do you think? 

39 comments:

  1. If I may say, a big reason why I don't come to the blog as I used to, is that you have answered so much of my current questions, and really helped my understanding of this disease and my options. I think you're very on the nose when it comes to quality over qauntity. Team G has achieved so much, I personally prefer knowing that you have sufficient rest and clarity, so you can use your A game when you need it. I don't think anyone needs to go through every pubmed paper on ms, it's alright to highlight what you feel is important, even if that means breaks between posts.
    Thank you for all that you do!

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    1. Thank you for this comment - it's good to know that the blog has answered people's questions!

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  2. I would suggest no more than one post per day and adding a summary at the top of the post. A curation tool may be helpful, i.e. on the landing page you can separate out relevant posts for people with MS from the more technical and scientific posts for researchers and neurologists. When I come back to the blog I find that I have to sort through 10 or more posts to find one that interests me and that I can understand. May be it is time to move platforms away from Blogger to something more friendly.

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    1. These are REALLY useful suggestions. Thank you so much for these.

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  3. I am pleased you have had a good holiday with time to relax and reflect, though posting at 04.44 is not such a good sign!.
    There are far too many posts on the blog. One a day is quite sufficient. Sometimes I even feel cross with you for posting more and spending too much time on it. I do read most of them but feel a 'duty' to sometimes as someone as put in so much effort!
    I have a scientific and medical background but am very taxed by some of the blogs and do wonder how many people read them in depth and understand them. Obviously I don't want too much dumbing down either, there are plenty of other blogs & forums that do that. I want intelligent and informed blogs.
    I have most appreciated the clinical commentaries, dilemmas re new treatments and management, service delivery etc rather than the research aspects as it helps me measure up against where I am and what I have been offered and it has really educated me and helped me have a broader view of MS, thank you. Happy with political rants as well as someone has to be shouting out about resources, equality etc.
    Having said that I am interested in the basic (!) biology and research so wouldn't want that dumped completely, but just the highlights please.
    I am used to navigating the website now so someone new to it may have more insightful comments on the changes needed.
    The poisonous trolls ranting about the fact that MS is not cured yet and who slag off all medics and researchers are a big turn off by the way. I end up feeling angry and often come away with a bad feeling rather than a good one.
    Good luck

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    1. Good points all round. I have to say I agree with you. Thank you for posting.

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  4. I agree 'less is more'. The quality of some of the posts is one reason why I visit less frequently. I would prefer one good post per week to 10+ mediocre posts per week that is currently being served up. I note Prof G is posting less frequently as a patient I like the clinical posts, particularly those on self-management. May be these can be copied to a separate site, which will make it easier to find old posts.

    On balance the blog is useful, but not as useful as it was a few years ago.

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  5. It's good to reflect and change. I agree with many of the comments made. To keep the blog fresh you need to continuously try new things. A better search function would be a good starting point.

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    1. A better search function is really important!

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  6. More guest bloggers will help.

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    1. Hi there, do you prefer any particular type of guest blog post?

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    2. How about profiles of other MS clinicians/researchers? A Q&A format -- perhaps a phone call that was transcribed and lightly edited for clarity would keep it conversational.

      I think a lot of us are interesting in things in the pipeline -- well before articles are published or presented at a conference.

      Many of us are also interested in hearing discussions about the MANY puzzles that remain concerning MS and why certain questions are easier to study (due to financing, study design issues, whatever).

      For clinicians, it would be interesting to hear their perspective on a huge range of issues that aren't even big research topics. Especially for PPMS patients, it would be great to hear from international experts who have many of this type of MS patient.

      Thank you! I love the blog. Your search function has always worked very well for me, but tags or categories might help.

      I like seeing many posts - including the stream of consciousness ones. But I also appreciate that there are benefits to stepping back and focusing on fewer more polished pieces.

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  7. I think you lose a lot by having a split web/phone platform. There are a lot of things on the web platform (EDSS calc, education pages, LP video, search function etc) which are all fabulous, but you don't know that they're there unless you log in via a PC. I think most people read on their phone, so probably don't know that the content is there.

    I really like the guest posts. I think the basic science posts are great to have, but I have to confess they can sometimes be hard to digest (speaking as someone who works in science).... Not sure how too get around this - have you thought about doing videos? I think that's kind of the way forward for more complex stuff (think about Facebook, you tend to watch videos now rather than read the content) - one of the fitness industry people was talking about video blogging the other day and said this was how he had improved his "readership".

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    1. Really interesting thought. What do you think about podcasts?

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  8. Sometimes things run their course and you need to refect on that as well.

    When I was diagnosed some 12 years ago I came across the ThisisMS and the Accelerated Cure sites - both have declined to a point where I no longer visit them.

    I visit the MS UK website as they post 5-6 research articles a week.

    The strength of this site is when it draws on your strength as clinicians drawing on your real experiences. I also appreciate your summaries of research events.

    I get turned off by the political posts. Readers will have a range of political views.

    The real issue you have is that relapsing MS is now manageable - 11 years after my Lemtrada infusions I am still in remission. I follow your brain health advice religiously. So the blog doesn't offer too much for me now.

    Another issue you have is that research is SLOW. Neuro-protection, re-myelination and neuro-restoration have not delivered yet and seem decades away. So patients with progressive disease don't get much info / hope from visiting the site regularly.

    Could you not just keep the site running as a information point - Brain Health Matters material, EDSS calculator... Perhaps just post 2-3 research articles a week with the usual para of Team G's thoughts. I would stick to important reasearch articles i.e.trial results, important information about treatments and summaries of research conferences. Ditch the articles on the t-cell responses too a brain infection in tape worms etc.

    Trolls are good. Sometimes blogs like these can be very sanctimonious and sometimes patronising. At the end of the day MS is a disease affecting an organ the size of a large grapefruit. 60 years on after lots of funding and tens of thousands of researchers the cause is still not known and some young people are ending up in wheelchairs and having their dreams taken away. Good work has been done but the really big breakthroughs have yet to come.

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  9. There's no point flogging a dead horse. I don't think effort should be wasted trying to boost viewers / readers. There's great info on this site which should remain accessible. The research / articles posted have lost their way. Have a section of the blog called key stories (or something). I'd suggest one post a week max. I'd also like a summary of the key research from the big research events (ECTRIMS etc.). MD has done good work, but if I see a picture of an eagle, knight or lego santa claus I'll jump over a cliff. A low maintenance blog will be better for everyone.

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    1. Mostly agree with anon above. The blog is becoming a victim of the advances in treating relapsing MS. With Lemtrada, Cladribine and Ocrelizumab those treated early in their disease should be able to look forward to having lives without the fear of further disease activity. For those with progressive / advanced disease (like me), the blog keeps me off the BBC website reading endless news stories. But as there are no treatments in the UK for progressive MS (despite what Team G suggests) I find little on the blog that helps me / gives me hope for the near future. Thank you for your efforts.

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  10. This blog is amazing and with out it I would still be in the dark about some aspects of MS. I am happy with how the blog is and i'm very grateful for all the hard work that is put into it. I often mention this blog when I see a doctor or HCP.
    Barts MS Blog in my opinion is the best MS blog.

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    1. I agree. There's nothing else like it. I like that you have defensible opinions based on evidence (T- vs. B-cells, EBV). It's very understandable to me, but I suspect it's intimidating to many readers and would take a fair amount of time and effort to get up to speed. It's kind of like learning a new language. The trolls are easily ignored by me, there's a lot of, perhaps understandable, resentment.

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    2. The blog is still losing its readership. It's very outdated and doesn't update itself enough. It rambles too much. It is not succinct.

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  11. Welcome news Prof G, but... please keep your rejuvenation ambition realistic and above all simple!

    The "art of writing for a lay audience" is never easy to learn, in any field let alone one as complex as MS. Aim for some basic improvements. That will suffice.

    Just being conscious of the need to make the posts a bit more readable by lay readers will itself probably lead to greater selectivity in what the team post.

    I would simply start with that, and avoid artificial restrictions such as “one post per day”. My worry is that any form of straightjacket (whether about content, political views, or rants) will cause the team to lose interest in posting. And none of us want that.

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  12. How rude. I totally disagree - this blog is really helpful. I read the blog every day and am so incredibly grateful for all those who give their time and expertise to write on here. I was diagnosed with MS three years ago and can say without a doubt that I have learnt so much important and relevant information. Invaluable when trying to decide about treatments etc when the twice yearly appointment with my consultant seems so time pressured with little opportunity to ask vital questions. Thank you, thank you, thankyou to all who contribute to help everyone who has to put up with this disease - for all your hard work and dedication. So good to hear that Prof G has been able to enjoy a relaxing break. Please do take care of yourselves.

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  13. I personally really like MD posts where he takes a published paper and puts the results in context (e.g. this was done 20 years ago in mice, this conclusion is not supported by the data because..., but this approach appears to be novel and may led to...). Yes, it takes effort to understand such posts, and I am sure I am not even close to real understanding, but these posts are tough-provoking and encourage further reading. I am sure it also takes time and effort to write such posts, which is why they do not appear very often. And quite likely, they will not make MD too many friends in the research community. But this feature of the blog is unique and valuable

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    1. Would you appreciate these posts in Plain English do you think?

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  14. More guest blogs and better search please. I trust your blog and find a lot of information on the plus side. I sometimes find it depressing though.

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  15. Less is more, I think a lot of us are all in agreement, that is a good way to go. Also build up guest blogs

    I think you need to pick your battles and fight them. A good example is the ThinkHand cos that engages people from many different arenas.

    I do think that getting the well-off to dip their hands into their pockets and help fund clinical trials is a fight that needs fighting . Also I assume the SPMS population is growing so making people aware of the lack of resource and attention for this segment. We are not the great unwashed but sometimes I feel we are treated that way.

    Pleased you are feeling refreshed and ready for another year

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  16. I look forward to reading this blog every day, and look forward the daily postings. There is something to be learned from each one , and if he gets too scientific on me I always understand the conclusion. Please continue to provide whatever info on MS is relevant! If someone is not interested in a post, they can just skip it! Thank you.

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  17. Md is the work horse of the blog

    Its nice when he reply to readers questions

    Thats what i like the most

    When you have questinos it means you have spend time thinking on your
    own about a subject ,paper... etc

    You could have more Mouse doctors

    Obrigado
    Luis

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  18. I think that the first purpose of this blog is the fight against misinformation and unfortunately that fight is never won. Thinking about the problem strategically, if the focus of the blog were to change and another CCSVI treatment were to appear, what would we do? The current blog counters that threat – that is very important.

    I think that Mouse Doctor gets bad press sometimes, I love his energy and I like the frequent post, for me the current cadence tell me that people are working on this and that give me hope. Also the blog is called the MS research blog so I think that it is fair that it is written in a language that is targeted to researchers.

    Times have changed though, thankfully with the current suite of drugs RRMS, for the most part, is a manageable long term condition. One day we will be able to switch off progression, but not yet. I think that all people with RRMS should get themselves on the most potent drug that they can access and free up resources to target PPMS and finding the route cause and a cure.
    I think that the blog needs a new challenge or focus; I would like to set some targets. The first target I would set is to reduce diagnosis time, how could we get people more quickly diagnosed? How could we catch people before they have any symptoms? Could we focus ourselves on analyzing breath, skin odor, ability testing, ultrasound whatever to get that very early signal that could lead into a full workup and an MRI. Could we rent an MRI and scan everyone in Aberdeen or some northern Scottish town. These are just suggestions, but this is something that I would like to discuss. It might sound like a moon shot but what could we do in the current or near term to help get people diagnosed sooner.

    How could we focus the research on PPMS? The RRMS folks have options, how could we direct research towards PPMS, restoration etc?

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  19. I adore your blogs, their humour, the detailed info. -although I often don't understand it all - and love the fact that your blogs inspire me and give me hope. If you want less of all this, then go to the MS Society website, which hardly ever changes and which I find depressing (sorry, MS society). I so admire and am in awe of all the wonderful, generous researchers at Barts who spend their lives working tirelessly for, what must sometimes feel like, an unachievable goal. I so look forward to reading your blogs - and the replies - every day and would be heart-broken if they ceased.

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  20. I'm a new reader to the blog (from Wheelchair Kamikaze) and I would say that it's not that the posts are written too scientifically, it's that they need basic editing for clarity and grammar.

    For example, a recent article had this section:

    "Do a trial and that's the start of impact. In fact for us basic scientist it seems that our clinical colleges are dead good at ensuring we have no impact.
    The positive..em failed THC trial in progression
    The positive.....can't be bothered to repeat and implement change...optic neuritis trial."

    The sentences are fragmentary, use UK-specific slang ("dead good" - what does this mean?), and contain a jumble of run-on thoughts joined with ellipses. I think this article would have benefited from going past an editor, because I can't make sense of what the author is saying, and it's not that I'm having trouble with the science.

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    1. Thanks for your feedback. Posts can be written in haste sometimes. I agree they should be proofread before being published.

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  21. I would just mention that I read this blog almost every day, but I have subscribed and get a daily email with the latest posts. As a result, I almost never click the links unless it's a post that can only be viewed on the website (things like surveys, slides, etc.). Also, I would come to the site more to post comments, but they do not work on my iPhone or Safari browser! If you could fix that, I would comment way more often!

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