Social Media and information dissemination

Narayanaswami P, Gronseth G, Dubinsky R, Penfold-Murray R, Cox J, Bever C Jr, Martins Y, Rheaume C, Shouse D, Getchius TS. The Impact of Social Media on Dissemination and Implementation of Clinical Practice Guidelines: A Longitudinal Observational Study.J Med Internet Res. 2015;17(8):e193. doi: 10.2196/jmir.4414.

BACKGROUND:Evidence-based clinical practice guidelines (CPGs) are statements that provide recommendations to optimize patient care for a specific clinical problem or question. Merely reading a guideline rarely leads to implementation of recommendations. The American Academy of Neurology (AAN) has a formal process of guideline development and dissemination. The last few years have seen a burgeoning of social media such as Facebook, Twitter, and LinkedIn, and newer methods of dissemination such as podcasts and webinars. The role of these media in guideline dissemination has not been studied. Systematic evaluation of dissemination methods and comparison of the effectiveness of newer methods with traditional methods is not available. It is also not known whether specific dissemination methods may be more effectively targeted to specific audiences.
OBJECTIVE: Our aim was to (1) develop an innovative dissemination strategy by adding social media-based dissemination methods to traditional methods for the AAN clinical practice guidelines “Complementary and alternative medicine in multiple sclerosis” (“CAM in MS”) and (2) evaluate whether the addition of social media outreach improves awareness of the CPG and knowledge of CPG recommendations, and affects implementation of those recommendations.
METHODS: Outcomes were measured by four surveys in each of the two target populations: patients and physicians/clinicians (“physicians”). The primary outcome was the difference in participants’ intent to discuss use of complementary and alternative medicine (CAM) with their physicians or patients, respectively, after novel dissemination, as compared with that after traditional dissemination. Secondary outcomes were changes in awareness of the CPG, knowledge of CPG content, and behavior regarding CAM use in multiple sclerosis (MS).
RESULTS: Response rates were 25.08% (622/2480) for physicians and 43.5% (348/800) for patients. Awareness of the CPG increased after traditional dissemination (absolute difference, 95% confidence interval: physicians 36%, 95% CI 25-46, and patients 10%, 95% CI 1-11) but did not increase further after novel dissemination (physicians 0%, 95% CI -11 to 11, and patients -4%, 95% CI -6 to 14). Intent to discuss CAM also increased after traditional dissemination but did not change after novel dissemination (traditional: physicians 12%, 95% CI 2-22, and patients 19%, 95% CI 3-33; novel: physicians 11%, 95% CI -1 to -21, and patients -8%, 95% CI -22 to 8). Knowledge of CPG recommendations and behavior regarding CAM use in MS did not change after either traditional dissemination or novel dissemination.
CONCLUSIONS: Social media-based dissemination methods did not confer additional benefit over print-, email-, and Internet-based methods in increasing CPG awareness and changing intent in physicians or patients. 
So this comes as no surprise that neuros do not utilise social media. We have been doing social media aspects at ECTRIMS and it is clear that few will use Twitter…at least professionally. The typical media, e.g. papers, pubmed, email and the web is something people are trained to use from our educators. 

However, social media is something we learn from our students, who regularly use facebook to perform joint projects and no doubt with time the results of the current survey will change as some of the target audience grow older. There are some of the current target audience who will have just moved away from using semaphor:-).
However, I do remember searching the library and books like “current contents” and Index Medicus (The paper version of pubmed that arrived once a month) to get new information. Now it is obtained without having to move from your computer.

That the response rate of neuros was low and serves to highlight the lack of engagement and use of facebook etc only adds to the work load for professionals and it is of no surprise that Facebook etc took little value in gaining knowledge of guidelines.

However, as you are clued into the professional media, is the social media needed for dissemination as long as it is “open access”?

Nevertheless, it takes little more than a few seconds to post links on social media

What do you use?

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  • As far as medical information goes, I never, ever trust anything I hear on social media such as Facebook. I will always seek verification from a trustworthy source. Social media is so full of badly spelled, barely considered guff written by people who don't know what they're talking about. And I'd not be too enthusiastic about soundbites fired off by my neurologist in his coffee break via Twitter either.

    • I follow this blog, certainly – I trust and respect it. In general, however, I cultivate a disdain for Facebook and Twitter as platforms. All this "like" voting and hashtag this and that: Normally I'm a very patient person, but…

      I think that my own neurologist ought to do proper consultations or write a letter with attention to good grammar, and not tweet at me. :o)

  • I am not a medico – just a person with MS who refuses to follow the latest crazes – Tweet = Twit in my view, and Facebook is more like Get out of my Face(book). However, these are the media in which so much is communicated these days, that they must be considered as useful tools for some purposes. I only recently admitted defeat and set up a Facebook page simply to access some of the MS pages which I had been told by others were worth following. Where are they – I haven't found them (but it could just be my inept and crap searching!). Most of what I have found is badly set up, misleading, hard to read, poorly organised, full of quick internet equivalents of "sound bites", lacking in any real substance, and for some of the alternative approaches to MS strongly leaning towards cultish.

    Unfortunately, it is the chosen medium for so many people these days, especially those that have never known life without it, so it is imperative that it be included among the communication methods are used for disseminating real information. If you can't beat 'em, you have no choice but to join them… (and as younger clinicians come up through the ranks this will be even more the situation)

  • lol i am a lawyer and think every problem can be solved by fighting it out with someone else. researchers believe every problem can be solved with a bit of research 😉

    i find social media extremely important in disseminating information and i dare say most of my ms information comes from the social media. i don't believe everything social media says – i always check the source, but social media does play a huge part in the dissemination of published information (not just popular information). i personally believe my partner's and mine ventures into the medical community (breast cancer and MS) would have been infinitely more difficult without social media. like the students you refer to, i am of the generation who grew up with googling the world information at my fingertips and cannot imagine life without it. the study published with this entry did not make it clear the age of the population studied, but i dare say that may in part have something to do with the results. either that or the study was commissioned by an old patriarchal individual or group feeling threatened by the big bad world of social media…. oops did i just say that? there goes my cynical side again…


    • Anon at 3.07pm back again
      It is not the internet per se that I have problems with – it was absolutely invaluable to me as a source of information in finding out about my MS and my own researches had definite positive benefits for my personal health status – although it is essential to be extremely discriminating in what you take on board, and equally essential that you use multiple sources to confirm or "deny" what you find online.

      The problem I have with social media sites such as Facebook is that the information is so truncated, not necessarily reliable, and is very badly presented. It's like trying to sort through fifteen baskets of mismatched socks to try and find a couple of matching pairs! (Oops – sounds a bit like trying to find the cause/s of MS…….)

    • There can't be too many people named Bojana who have MS and are cruising the cyber world for info on MS…………
      It is indeed a world made much smaller and circular by the internet – I sent a link to the Barts posting on understanding MRIs ( to the moderator of, which he subsequently uploaded to the MStranslate Facebook page, and lo and behold a person called Bojana came back to good ol' Barts Blog to read it and then posted a positive comment calling a "brilliant article". The world is indeed becoming much more connected and full of people proactively doing their own research.

    • Surely I'm the only Bojana in the world? 😉 I like to think so lol… My partner is the one with MS but other than that right on every count. Thanks for your comment 🙂 Bojana

  • There are so many mistakes on social media, sometimes it's dangerous to take seriously. However,
    what I do find frustrating are the consultant's clinic letters sent to my GP full of mistakes not just spellings. I'm pleased to say my neurologist is always accurate which seems to be unusual in my experience.

    • I agree about the frustrations of sloppily composed correspondence – in one of the letters my neurologist sent to my GP I was twice referred to using my GP's given name, and three times my own name was used. Most confusing for everyone, especially as the letter made it sound like he had discussed my diagnosis with my GP when he hadn't. It's made even worse by the transcription typists just typing up what's dictated, even if it clearly does not make sense.

      Time frames is another big problem where I live – some of the neuro's letters take up to five weeks to get sent to my GP after I've had a review appointment.

    • I would say at least 50% of correspondence from neurology, GP's and other hospital departments there has been errors, typos and major spelling mistakes. Wrong dates, my first name is wrong.

      One letter to my neuro from a GP was addressed to the urology not neurology depertment at the wrong hospital.
      Another letter written from a different GP to my neuro it was agreed it would be a one week referral to see my neuro, I was having a severe relapse. The referral letter was sent to the wrong hosital and it was a six week referral.

      Now I have learned the hard way to request a copy of referral letters the day after they have been requested/written. To check for these mistakes and all important symptoms are added and described correctly.

    • My son ended up in the local neurology centre where he was diagnosed with transverse myelitis. On discharge they said they wanted to see him again in 4 weeks. We asked to make an appointment there and then, but they said no, a letter would be sent. Nothing was so I phoned up 3 weeks later- his file had been filed, no letter, no appointment. The letter finally was written 8 weeks after his discharge and his appointment was 12 weeks after his discharge. He was also sent a copy of the letter which stated that he was warned it could turn out to be MS- he wasn't, and got a big shock on reading it. And that was a big neurological centre, not an ordinary hospital. It did turn out to be MS

  • What did we do before social media, I don't think we were any less productive? We may be more aware of our surroundings if we didn't engage without every min of the day. Certainly, the boundaries of reality and fiction are blurred as a result…

    • What did we do before social media? Perhaps we could spell better and remember more and perhaps we embarrassed ourselves less.

      We didn’t have the world information at our fingertips, depending on which groups on social media we decide to join.

      We didn’t ready information dissemination outside of libraries nor could I lie in bed reading complex published journals from my laptop (social media and online publishing of journal articles are of about the same age). Because information dissemination was restricted to those in power or in the media we didn’t have the capability to question everything and everyone. Now we do.

      Like everything else, reading social media is a skill – how to discard what is crap and what is not. Most baby boomers know consume to television media – they know how to tell which current affairs programs are crap which have some merit etc. But they don’t have the same level of skills that the young generations have in wading the social media maze. It’s been very well established by now that people fear and criticise that which they don’t understand.
      So what if the younger generation is engaging in social media for most of the day, every day? All those studies complaining (rather than learning) that toddlers’ brains are being changed by ipads make absolutely no sense to me – of course our environment continues to change our brains – it’s been happening for 3000 years now, why stop today with ipads?


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