I’m taking advantage of the “snow day” to share what I have been reading, watching, listening to, thinking about — and I invite you to join me, even if you don’t have a snow day. (Truth be told, DC only got a couple of inches and a 2-hour delay, but humor me.)
Legitimacy through public service: The New York Times lifted their pay wall so non-subscribers could follow their storm coverage. I love when legacy media companies are aware of the responsibility — and opportunity — embedded in moments of public need. How might we infect medical and scientific journals with the same sense of responsibility and opportunity?
Note: I grabbed the image above from the NYT Instagram slideshow (and felt OK about it since they grabbed it from Anna Dorfman’s feed in the first place).
Legitimacy through honesty: Hank Green was one of the three YouTube stars who interviewed President Obama after the State of the Union. He wrote about legacy media companies’ vicious reaction. Key quotes:
I may be biased here, but I feel like there’s an actual and honorable goal in all of this. America needs to convince young people that there are good reasons to be civically involved. Millenials are soon to be the biggest hunk of the electorate and, if the mid-terms are any indication, they simply don’t care. And that shouldn’t be surprising since no one is connecting to them in the ways they connect with each other or talking about issues that matter to them from perspectives they can identify with.
Legacy media accuses young people of being apathetic while actively attempting to remove them from the discussion…
Legacy media isn’t mocking us because we aren’t a legitimate source of information; they’re mocking us because they’re terrified.
Swap out “legacy media” and swap in “legacy health information sources” or “legacy health systems” and we’ve got ourselves a great discussion topic. For example: “Legacy health systems accuse patients of being apathetic while actively attempting to remove them from the discussion.”
Speaking of honesty: Hank has talked openly and eloquently about living with ulcerative colitis. Watch:
Soft power: I’m intrigued by the use of unconventional means to shift the public conversation about health and health care. Poetry, music, painting, dance, theater — these are all ways to reach people, and really, to reach into people. Into their hearts, into their secret wishes and dreams.
Joseph Nye, a Harvard professor, invented the term “soft power” and has written about how it “rests on the ability to shape the preferences of others” through attraction rather than coercion. Decades ago, Antoine De Saint Exupéry captured the idea in this lovely line:
If you want to build a ship, don’t drum up people to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea.
Where do you see examples of people wielding soft power to change the culture of health?
My pick this week: The Writer’s Almanac, which is edited by Garrison Keillor. I had noticed that the Almanac often features health or medical history so I asked about it on Twitter — and they answered:
@writersalmanac I love your updates, which so often contain health/medical history. May I ask if that’s of special interest to you?
— Susannah Fox (@SusannahFox) January 23, 2015
@SusannahFox GK likes to include scientific breakthroughs in the daily notes and that often equals medical milestones!
— The Writer’s Almanac (@writersalmanac) January 23, 2015
And now for an excerpt of the poem they shared that has stuck with me since the moment I read it:
Music, by Anne Porter
Why is it that music
At its most beautiful
Opens a wound in us
An ache a desolation
Deep as a homesickness
For some far-off
And half-forgotten country
I’ve never understood
Why this is so
But there’s an ancient legend
From the other side of the world
That gives away the secret
Of this mysterious sorrow
For centuries on centuries
We have been wandering
But we were made for Paradise
As deer for the forest
And when music comes to us
With its heavenly beauty
It brings us desolation
For when we hear it
We half remember
That lost native country
We dimly remember the fields
Their fragrant windswept clover
The birdsongs in the orchards
The wild white violets in the moss
By the transparent streams
Read — or listen to — the whole poem here, along with wonderful history lessons about Elizabeth Blackwell, the first woman to complete medical school in the U.S., and Gertrude B. Elion, who helped develop drugs to to treat leukemia, herpes, gout, and malaria.
Oh, and to close a loop: I think Hank Green and other YouTubers wield soft power, attracting people to their brand of truth, making their audience long for news and information sources that meet them where they are. Again, I see parallels with alternative health information sources. Do you?
Snow days are such a great treat in the workalcoholic culture we live in.
Susannah Fox says
True. An excuse to play. We need it!
Mary Aviles says
I was thinking about your twitter request for a comment, so here you go: your post fits in alongside several streams that am interested in lately. I’m (finally) reading Jonah Berger’s Contagious (Why Things Catch On). I also recently heard Jonah Peretti of BuzzFeed speak live. He was charming and had lots to say about content as a means of connection (and his anecdotes about his college years made me feel like mine were woefully unproductive!). His point was that people share content because it strikes a genuine cord–often using humor to do so. As a market researcher, I spend a LOT of time listening to consumers/patients. A common theme is the consumer/patient’s desire for ease, for communication/interaction that communicates empathy: save me time, make what is hard easier, help me, work WITH me. Too often communication is used commercially or politically or in the media to coerce rather than to inform. We hear often how much consumers/patients yearn for a resource, but if the entity that purports to be a resource is attempting to coerce, it cannot ever truly be a real resource. I had been seeing Hank Green’s interview all over my various social feeds from widely disparate sources. This in and of itself suggests he’s on to something in the content he delivers–he’s made a unique connection with more than just Milenniels and I think you hit it on the head when you attributed it to his honesty lending legitimacy.
Susannah Fox says
Mary, thanks so much for making the jump from Twitter!
Here’s the line that calls out to me:
“We hear often how much consumers/patients yearn for a resource, but if the entity that purports to be a resource is attempting to coerce, it cannot ever truly be a real resource.”
To speak with honesty and authenticity, to tell the truth — that’s what people do naturally in conversation with each other. And that’s not what we see health entities doing naturally, at least most of them. They are hemmed in by their training, by regulations, by a host of issues. How might we help institutions speak in that authentic voice and reach consumers where they are? Or inject facts (backed by institutional heft) into the public conversation? This is the primary challenge as we move from the first phase of the internet (connecting documents) to the second phase (connecting people).
Let’s look for examples, even in other industries, and keep the discussion going!
Ernesto Ramirez says
Prompted by your call to action and Dana Lewis’ great response I wrote up my idea about continuing and extending the work of the OpenNotes project to include something called OpenResearch. It’s still a work in progress, but maybe that idea will influence or inspire others to work on “infecting medical and scientific journals with the same sense of responsibility and opportunity.”
Full post is here: https://medium.com/ernesto-ramirez/opening-up-expertise-bb47d298ac6e
Susannah Fox says
Thank you! This is exactly what I hoped for — to spread the inspiration.
I love your closing question:
How can we help create a culture of health where we all have the ability to be experts about our health?
What are the elements that need to be in place?
Here’s a list of roadblocks and opportunities I wrote about in 2012:
– pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability
– people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment
– technology that is simply a pain to use
– communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other
– a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes
– caregivers who can help someone access online resources they may need to get better care – that’s second-degree internet access
– a life-changing diagnosis or other event can prompt engagement – and trigger the diagnosis difference
– mobile adoption is on the rise and seems to have an independent effect on people’s engagement online – triggering the mobile difference
– technology that is easy to use, that makes engagement fun and even irresistible
– technological means to connect silos and let data flow
– mainstream press coverage, word of mouth, and clinical programs that help to spread awareness
Three years later I’m seeing the erosion of some of the roadblocks and the drumbeat of opportunity growing louder. It’s on my list to write an update post about this list, but in the meantime, I’d love to hear what other people think about where we stand, what you’re seeing where you live, work & play.
Update: health literacy is a significant roadblock. Thanks @jashenson!
Susannah Fox says
My life is happily very full these days, so my primary source of professional social interaction is on Twitter. I am able to spend the day writing, traveling, consulting (or, in yesterday’s case, playing Monopoly with my son who was home sick) and then pop up to the surface for the oxygen I get from the health geek tribe.
I engaged in a bit of a tweet storm late last night, trying to drum up a conversation about the issues I raise in this post. Thanks to all those who replied! I invite you to consider writing more here in the comments.
Meantime, if you want to see a bit of what happened, click on each of the following and look at the replies:
I’d love to get a conversation going on my blog about a few things, and I have a minute (hi, second shift!) so here goes…
The @nytimes lifted their pay wall during the storm. How might we infect medical journals with the same sense of public service?
I’m intrigued by the use of unconventional means to shift the public conversation about health and health care. Poetry, music, painting…
Wonderful, beautiful, inspiring stuff. Thank you!
Mary Aviles says
Really, really great suggestions above! We blogged a year ago about health systems positioning themselves for care givers, including a list of possible opportunities for operationalization: http://baumanresearch.com/linking-wellness-caregiving/ I added your suggestion about access to online resources above. That’s a great one!
Susannah Fox says
I love how you write in that post about how “wellness” is centered on the individual, but how caregiving is outwardly focused — and how big that group is if we broaden our view of it.
That’s the insight that Ai-jen Poo brought to my attention recently, talking about the “caring majority” she sees: the paid AND the unpaid work that surrounds someone living with disability or illness. She is the director of the National Domestic Workers Alliance and co-director of the Caring Across Generations campaign, which supports training and advocacy for these workers. I’m looking forward to reading her book, The Age of Dignity.
Fred Trotter says
I am very interested in this notion that media sources would temporarily become more open in response to great public need.
On twitter you mentioned that perhaps medical journals could take a hint from the Times. That actually makes sense. In the midst of a Measles outbreak, for instance, it might make sense to make all vaccination related articles temporarily open access.
I cannot imagine how that could directly impact the public, but the indirect benefit could be significant.
Remind me to discuss the SEO of your blog the next time we chat…
Susannah Fox says
Thanks for making the jump from Twitter!
Greg Dworkin tweeted a couple of links to show that some medical journals are doing this already, such as when The Lancet lifted the paywall on a “meta-analysis for all clinical trials comparing oseltamivir with placebo for treatment of seasonal influenza in adults regarding symptom alleviation, complications, and safety.” Oseltamivir is Tamiflu, btw.
Another clinician, David Hambrick wrote: “Interesting take, but most non-medical population (and some medical) lack skills to properly critique med papers and research.”
This is a classic argument against giving people access to industrial-strength information.
The good news is that there are ways to help people navigate the high-level stuff: suggest that they ask someone to help them. Leveraging someone’s social network (the online OR the offline kind) can be a shortcut to understanding.
Another tool: Iodine’s medical translator Chrome plugin. (Disclosure: I’m an advisor to Iodine.)
Other people talking about this issue on Twitter exposed what I think is the Trojan horse issue: Who defines a “crisis”? What is a worthy situation for a paywalled site to let people in?
Alan Brewington suggested, for example: “Start small. Remove paywalls for voting, Supreme Court HC cases, outbreaks, natural disasters.”
But where does it end? How bad does the natural disaster have to be? How close or far away from the city or state where the news outlet originates? Etc.
And @AfternoonNapper asked, simply: “Crisis-based or consumer-based?”
I think she is also pointing out the slippery slope of who gets to decide what a crisis is and which one is worthy — a public health crisis or a private health crisis? Is there an argument for a compassionate use program for medical journals, as there is for drugs? (For those not familiar with it: “Expanded access, also called ‘compassionate use’ is a regulation that makes promising drugs and devices available to patients with serious or immediately life-threatening diseases.”)
Greg Dworkin, MD says
Thanks for this idea! I did post a couple of examples, as you mention. Some of the larger journals are very good about opening the paywall for flu articles. There’s been pressure to do this because of the recent flu pandemic in 2009 (and even before that HHS Secretary Mike Leavitt worked with flu bloggers to disseminate information; flublogia is well established).
Other topics don’t have that kind of history or govt. push, but maybe they should (measles comes to mind, even Lyme disease might be a good idea) as a matter of public health.