One of the most important customer-service lessons I ever learned was from E-patient Dave: when it comes to disseminating research, give people what they need, not what you want to create.
About a decade ago, Dave was on deadline to turn in slides for a presentation. He needed one key survey finding to illustrate a point and for the life of him he couldn’t find it on the Pew Internet website. Because we’re friends, he was able to email me and I could send it to him within minutes. But it sparked an idea for him: How many other people are in his position but don’t have the phone-a-friend option? How many people give up looking for the needle in a haystack and just delete that slide from their presentation? He suggested we create a “greatest hits” round-up of our research findings, starting with the most basic: What percentage of U.S. adults go online? What percentage have looked online for health information? Etc.
Here’s the truth: Few people read full-length research reports. What most people want are the key data they need to make their point, to sell their idea. As a researcher, it’s my dearest wish to see the data flow where it needs to go, so I took Dave’s suggestion and helped create what would become a runaway hit: fact sheets.
Now I’m an independent researcher focused on the intersection of health and technology. Continuing the tradition of getting out of people’s way, I have created new fact sheets:
- Fact sheet: U.S. teens’ and adults’ use of the internet to gather, share, and create health information
- Key findings related to 14- to 22-year-olds’ digital health practices, social media use, and mental well-being
- Fact sheet: 14- to 17-year-olds vs. 18- to 22-year-olds in their use of social media and online health resources
- Fact sheet: differences between young women and young men in their use of social media and online health resources
- Pew Research: Americans’ Data Worries
Of course I’d be thrilled if you decided to click through and read the full reports since there is so much more to explore about each topic. But for now, please do let me know if you have questions or would like to see the data broken out in other ways.
Photo by Madhavi Kuram on Flickr
Lynda Mitchell says
I have relied on your fact sheets!
With respect to patient engagement and clinical evidence, it is so important to connect patients to research (not just other medical professionals) so patients learn evidence-based information to make informed decisions and to have better conversations with their doctors. This requires research findings to be disseminated in a way that keeps health literacy and digital literacy in mind, and in places where people will look for that information.
I’m really impressed by the growing number of medical professionals and other researchers who are becoming part of the conversation on social media to share evidence-based information and to counter-balance the misinformation and myths that are out there.
Susannah Fox says
Great points, Lynda! An informed patient educates herself about options AND seeks second opinions from clinicians — “Dr. Google” (meaning searching online) AND the nurse/doctor/therapist/etc. who can look at a specific case. I agree it’s huge progress to see clinicians joining the public conversation, using their voices to flood the zone with science and evidence.
I was reminded of how much the public conversation has changed while listening to Bryan Vartabedian’s podcast this weekend. In one episode he talked about how, when he joined Twitter a decade ago, lots of clinicians cloaked their remarks in anonymity. Now they own their real names and identities — and it’s the right thing to do, to counter-balance misinformation and myths, as you eloquently put it. Here’s a post I found on his blog that pertains to this issue.
Lynda Mitchell says
That is very true. I also saw very knowledgeable clinicians get off social media because there was so much misinformation out there and they felt their contributions where not making enough difference. (I suppose it was a critical mass issue at the time…)
Interesting blog post from Dr. V. I see (and I’m grateful for) a growing group of clinicians in the middle. Maybe they are a separate group to call out? Dr. V references “homemade KOLs” here that seems to fit what I’m referring to: https://33charts.com/physician-thought-leaders-digital/.
These physicians are using these platforms for patient education and sharing evidence-based information with patients and their clinician peers, either from their own accounts, or by representing their professional associations on social media. They do it in an engaging way. They are growing in influence and authority because of how they are strategically using social media.
Because these professionals are interacting with patients as well as their peers on a regular basis, they are building trust with both patients and clinicians and filling an important void that wasn’t out there in the earlier years.
From a patient perspective, people want to know who to trust. If patients see peer-to-peer conversations among clinicians on social media, and if they can interact and get trustworthy information, they can a sense of who to trust and who to listen to.
Conversely, if that kind of dialog is absent on social media, then folks may only listen to the influential poseurs that Dr. V references.
Perry Gee says
Thank you so much Susannah! As a researcher, your work has inspired and informed me so many times. Your fact sheets are very helpful as I prepare talks, build a case, and get ideas for studies. Please keep them coming and let us know how we can help.
Susannah Fox says
Thanks, Perry! One request: Let me know what’s missing, what would be useful. While at Pew Research I sometimes joked that I was like a data DJ that takes requests. By listening and learning from people in the field, our surveys on fast-moving industries were sharper and more salient to the public conversation.
I plan to blog about each new fact sheet and will leave the comments open on each one to be able to keep the conversation going.
Dave deBronkart says
This is too busy a morning for me to dig into this as much as I wish, so I’ll just say thank you thank you thank you!
I’m tickled that since your departure Pew has “stolen” the idea for what I originally called a “reporter’s tip sheet” on healthcare, and escalated it. I know they did because I created a shortlink for it bit.ly/pewhealthtips and though they no longer cover healthcare, that link now redirects to their /fact-sheets page!
Part of my motivation for requesting that page was personal, as you say – that particular number, for that particular speech – but there’s a sociological level, too: so often citizens are held back from understanding something simply because they can’t get at facts the insiders have, or can’t cite one because they can’t recall where they saw it. The sociological problem is that insiders then conclude that ordinary citizens aren’t capable of more knowledgeable thinking.
Democratization of knowledge. Thank you (all) for the extra effort it requires on your part … because dissemination is so important in the advancement of civilization.
Dave deBronkart says
Re dissemination per se: in my travels and speaking engagements one blind spot I’ve seen everywhere is the assumption among scientists and researchers that once they’ve figured something out, their work is finished – the world has improved. Wrong: until the news reaches the front lines (the point of care), care is guaranteed to fall short of potential.
Six years ago I blogged about the famous “17 years for half of docs to adopt new knowledge” article (Balas & Boren, 2001) and a commenter stunned me by posting that this is not new – when the British Navy figured out that citrus could cure the fatal disease scurvy, it took 264 years for the news to spread throughout the British empire!
This is one of the key ways that e-patients sometimes blindside a clinician by knowing something the clinician doesn’t: the motivated patient finds an article years after its release, while the busy clinician was busy doing other important things.
For a modern clinician that’s never a “shock to the doc,” but more than once I’ve heard of doctors who respond indignantly, suggesting that it’s THEIR job to know things, not the patient’s.
Well, fine, doc, if you want that burden, then you better know it all instantly, and be available to be pinged. Otherwise, please welcome the help from motivated and activated patients!
Or you could post some fact sheets so people CAN consult your wisdom 24/7. 🙂
Roni Zeiger says
User-centered research dissemination at its finest. Thank you, Susannah.