Research, writing, and the public conversation

I’m crunching survey data nonstop these days, writing two reports to be published in January, so I’m not leaving my writing cave office very often.

But before I went into quiet mode, I recorded a podcast with Fran Melmed and Carol Harnett, hosts of the CoHealth Checkup. They elicited some stories I haven’t told elsewhere and I talked about some of the new data coming out of Pew Internet’s 2012 health survey.

Listen to internet radio with CoHealth Checkup on Blog Talk Radio

I also talked about a trend that I hope is going to catch on: researchers taking  responsibility for the translation and spread of their insights to the public, as H. Gilbert Welch does in this video:

 

12 thoughts on “Research, writing, and the public conversation

  1. Or is it that others–like you–have to do the translation for researchers? Otherwise, they end up solely promoting their own work, and there is just more confusing info thrown at the public?

    • Great question!

      I posted that particular video because I thought it was a good example of a researcher explaining rather technical findings in plain English. I’d love to know who he was thinking of as his primary audience — colleagues (ie, clinicians), women contemplating their choices, or (maybe) journalists.

      My own role is a hybrid. I am primarily a researcher, but I work for an organization that takes communications very seriously: the Pew Research Center. For many years, our audience was defined as “the public” and “policymakers” — and our primary mouthpiece was “the press.” The scare quotes are there for a reason — all 3 groups have fundamentally changed in the last decade. We can no longer (and I don’t want to) rely solely on reporters as the translators of our research. We can have direct contact with our audience.

      The other part of my work is indeed highlighting other people’s research. That’s such a core part of what I do on Twitter, in fact, that there are many people who, when they meet me, don’t know that my day job is producing original research.

      I bet that’s also true for someone like Mike Evans, MD, who produces engaging, explanatory health videos. One example is in this post:

      YouTube = health education channel
      http://susannahfox.com/2012/10/08/youtube-health-education-channel/

      We all “know” him as this cartoon figure with a soothing voice. But he’s also a practicing physician:
      http://www.myfavouritemedicine.com/about-dr-mike/

      Anyway, this is a very interesting question. Who is the best translator for research? The researcher herself or himself? A journalist? An expert colleague, like a science or medicine blogger? In the case of some health findings, is the best translator a knowledgeable patient or caregiver?

      • Oh, and for those who want to think through the role of the press, here’s an article that Elin Silveous sent to me today:

        Survival of the wrongest
        How personal-health journalism ignores the fundamental pitfalls baked into all scientific research and serves up a daily diet of unreliable information
        By David H. Freedman in the Columbia Journalism Review

        (ouch)

      • Susannah,
        Great question. As a fellow researcher, I strongly believe that it is our responsibility to disseminate research findings to the general public, but I don’t think this is the status quo for majority of researchers out there.
        Why is this?
        1) We aren’t trained to do it. We are focused on publishing in academic journals; there is a passive scientific style to publishing in journals that serves the function of communicating with our own research tribe, but not the average layperson.
        2) Our journal publications are typically not available to the public, although that is slowly changing with open access to publicly funded research.
        3) We are funded to do the research but not to disseminate it, although that may be changing with the new PCORI initiatives.
        4) If we choose to disseminate press releases for our studies, we don’t use enough visual communication (infographics, interactive visualization, videos) to effectively transmit our message.
        5) We choose not to disseminate the research findings for fear that the message or meaning will be interpreted incorrectly by journalists looking to oversimplify the research findings in hopes of making a big media splash.
        6) Finally, we aren’t rewarded for public communication in the promotions and tenure process.

        Social media and the internet is slowly changing the status quo. You have provided great examples of individuals who are innovating in the research communication space. Related to child health in particular, one of my mentors, Matthew Davis, MD, MAPP, Professor of Pediatrics, Internal Medicine, and Public Policy, created the C.S. Mott Children’s Hospital National Poll on Children’s Health, (http://mottnpch.org/) to capture the pulse of the public on current child health issues and provide information and education to parents and families. And colleagues of mine from the University of Michigan School of Public Health have done a nice job of pairing the traditional research press release on BPA with an explanatory 2 minute video (http://bit.ly/TAr6eG) to enhance the opportunity for dissemination.
        I love the fact that through social media, science bloggers and journalists are creating a community conversation about research, disseminating and parsing knowledge for the lay public, but researchers also must participate in the conversation to make sure that their in depth knowledge and perspective is shared. I think there are potential health consequences of researchers not engaging in the public dialogue: in the field of child health, the vaccine autism myth is a prime example of the health consequences.

        • Thanks, Joyce! Great points, many of which I do not have to deal with personally, because I’m outside academia.

          In regards to child health, I just became aware of the Vaccine Confidence Index – I wonder if the same principles could be applied elsewhere, to other fields?

          Also, Josh Greenberg posted this article on Twitter last night as a response to my initial question:

          Extending the reach of research as a public good: Moving beyond the paradox of “zero-sum language games” by Johanne Provençal

          From the abstract:

          Extending the reach of research as a public good has become widely recognized as a policy priority for research funding organizations in many nations. Yet, there is little academic merit given to such work, presenting scholars with the paradox of a “zero-sum language game” in which they succeed in mobilizing knowledge across discourse communities—such as governments, industry, media, community organizations and the public—at the cost of their success within academic discourse communities.

        • Joyce has named the main reason with all its facettes why researchers refrain from disseminating their findings to a general audience: they feel uncomfortable beyond the academic discourse because adressing a wider audience means loosing control over the topic at the very same moment. But researches are not the only ones who act that way. Company executives who feel the urge “to do something on Facebook” but who don’t know (and secretly fear) the principles of social media show a similar reaction. And so they hire social media experts and community managers to do the communication for them. Academic researchers should give it a try too. There are so many thrilling insights that can be gained from academic research and in Google Scholar it is just one click away! I just mentioned community management. A lot of current best practices are based on personal experience of practitioners. But if you dig a little bit you discover a whole universe of studies that deal in every possible way with virtual communities for instance. As far as I can tell, this knowledge has not yet found its way to the practitioners. That’s why I began writing my blog last year: http://the-virtual-community-blog.blogspot.de. And so far the initiative has been benevolently accepted.

          • Wow, your blog is a smorgasbord of insight! I’ll explore it and add some comments if I have related resources to share. Thanks so much!

    • Hi Leana. Hi susannah.
      Interesting posts and questions. I suppose the “who” does translation depends on the “what”. For example – regarding psychosocial issues in cancer i think the people who have been there are the translators (see a series we did called the Truth of It- http://www.cancerview.ca/thetruthofit). Sometimes we mix patients and experts. I like this one we did on Atrial fibrillation as it mixes the reality of patients symptoms with the expert explanation.. (http://www.youtube.com/watch?v=1zswfmWPsC8). Most of my work now is focussed on a YouTube Medical School for the Public (www.youtube.com/docmikeevans). This work is highly influenced by seeing a wide variety of patients in a general practice, training in evidence-based medicine and research, and experience in multi-media and communicating with the public– So a bit unique.. but what i would say is that the biggest advantage has come from redefining “interdisciplinary” in health- My team includes patients, film makers, illustrators, designers, marketers, experts, users, and so on.. and this “co-laboratory” has made it incredibly fun and much more effective. Without this team i would not get very far. Stories trump data in my world- which has led to a lot of misinformation- so we try and tell evidence-based stories and imbed them in the relationships of care.. clinician to patient …but much more person to person. What susannah would call peer-to-peer healthcare. In order to do this we have to make health care messaging more engaging. More infectious.
      This takes a lot of work. To look at all the data and boil it down and then to create an engaging story is tricky. As Mark Twain said, “I didnt have enough time to write you a short letter..” One good question is whether organizations can effectively do this– health organizations tend to be focussed on not making mistakes, erring on the side of caution, creating one size fits all solutions, etc.. Which is good, i suppose, but perhaps also limiting.
      think ill stop there..

      • Thanks for answering my page on Twitter, Mike! I checked out those links and will be sharing them with friends as well as professionally. We do indeed have to make health care messaging more infectious! Your phrasing reminded me to post a link to Seduce Health (tag line: “Talk health to me, baby”)

        http://seducehealth.org/

        They don’t update often, but I love every post.

  2. This is a great topic, I think about this a lot. PR around scientific research is a really mixed bag with a lot of it being awful and/or strictly self promoting.

    When the gene discovery was published this past summer for M-CM, the press release cited cancer, epilepsy and autism as the impacted health concerns. None of these are on the top three list of concerns for most M-CM families, I’d say they are all sort of ancillary for us. I’ve been scratching my head over this ever since.

    That said, I do agree with this idea. I think that a public conversation about what is presented would help keep utter BS in check. Boston Children’s Hospital’s PR goes on a blog with comments.

    I just saw someone from the FDA on a panel saying how misunderstood the FDA is and my thought was: it’s an institution’s own responsibility to be understood and trusted.

    • Thanks, Christy, for these powerful ideas.

      Rare disease researchers have a special communications challenge — to capture a wider audience, they often try to universalize or at least broaden the implications of their work. The M-CM story is a great example. It’s not necessarily a bad strategy, but we should be aware of it. What is lost when that is the focus?

      As for “it’s an institution’s own responsibility to be understood and trusted” — that’s a Cluetrain Manifesto insight that still hasn’t fully soaked in. Love it.

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