Update: the videos are up — thanks, @EinsteinMed!
On Friday, I spoke at the Albert Einstein College of Medicine, along with Kevin Pho, MD. During a planning call, the symposium organizers had shared results from a faculty survey: Fully two-thirds do not use social tools on a regular basis. Asking them, therefore, to spend a half-day learning about social media was a pretty bold request.
Inspired by Kathy Sierra to focus on the users’ (that is, the audience’s) needs, I began with a question that many busy clinicians might be asking:
How do we know that social media is important to health care?
Why should they take anyone’s word for it? Where is the evidence?
Here’s the data I gathered, with a special focus on low-income, low-literacy, and immigrant populations since we were at a hospital serving the Bronx:
[slideshare id=27376884&doc=foxateinsteincollegeofmedicineoct2013-131020065935-phpapp02]
If you download the file, you can see the resources and studies I link to in the notes section for each slide. A few highlights:
1) The Pew Research Center, where I work, collects survey data to hold a mirror up to society and to provide a window into people’s lives. I collect “vanguard data” in the form of stories, like this one, about two moms who connected on Facebook and prevented the overtreatment of a child.
2) Text messaging counts as a social tool. And there is evidence that it works as a health tool.
3) Video is a viable option for health education, particularly among low-literacy populations.
4) Clinicians are still central to most people’s health care decision-making. And most of the conversation and care happens offline. There is still plenty of time for clinicians to join in the social media revolution.
I put together a Storify of the tweets related to the two keynotes:
Social media’s use in medicine
And finally:
I began the talk with a question and ended with an answer, of sorts, in the same form as Michael Pollan‘s 7-word wisdom about nutrition:
Eat food. Not too much. Mostly plants.
My version, for these clinicians facing down choices about social media engagement, was as follows:
Listen in. Share your wisdom. Encourage others.
My first draft ended with “Welcome change” but I decided it was better advice to encourage others to join them, which could be interpreted as other colleagues, their students, or even their patients. So I was delighted when Kevin included this Charles Darwin quote in his remarks:
“It is not the strongest of a species that survives, nor the most intelligent, but the one most responsive to change.”
What do you think? Are you convinced? What other evidence do we need to collect? What would be your advice to clinicians — or others — who are just starting out in health care social media?
That is a really interesting presentation. Thank you. I am baffled that relatively few use the internet to help diagnose illnesses – maybe they don’t trust the source of the information? I am fascinated that only 30% look to health professionals for emotional support/ advice following diagnosis. That is food for thought – maybe people don’t know that emotional support is available or perhaps they don’t feel it is a genuine offer of help (“here’s a leaflet…”). I am UK based so would be interested to see if it is the same pattern over here.
I’d love to see parallel studies of health care social media in other countries! I know some researchers in the UK, Spain, France, Germany… I’ll see what I can find.
As for the “relatively few” who self-dx online, be sure to check out the full results of our Health Online report. For example, 47% of US adults ages 18-29 have gone online specifically to figure out their own or someone else’s medical condition. It is equally high among those with a college degree. Does that seem more in line with what you’d expect?
Hi Susannah. I still think the figures are quite low. I would have guessed that most people would have a peek on Google (or their preferred search engine) in the first instance and I would have been wrong. It’s why research should be carried out by professional people like you instead of people like me thinking “Well I do it, so do my friends so everyone else probably does it too.”
Ha! You made my day. I very much appreciate the honesty that reality doesn’t fit with your perception — and you are willing to accept reality!
If you haven’t yet read it, here’s an article that people kept emailing me all yesterday and today, so I finally read it:
Why We Make Bad Decisions
Count yourself in the “mindful minority.”
Sharing our knowledge via social media is crucial! I love Twitter for connecting with new colleagues across the country….and world! My advice is to take baby steps…and reach out to others. I have found people to be welcoming and encouraging!
Yes, I think clinicians came away from Friday’s symposium with that advice in mind. I like how Kevin makes it seem do-able, ie, advising clinicians to start with LinkedIn and spend time listening, observing, before diving in too deeply.
A hurried but enthusiastic “Clap clap clap clap clap!!”
And I’m thrilled to learn of Kathy Sierra’s post, which echos one that I did as part of my Speaker Academy series. Great to meet you, Kathy!
More later, I hope. I love how you elevate audience engagement to, for all practical purposes, poetry.
Kevin’s Darwin quote reminds me of another, from Stewart Brand, editor of the Whole Earth Catalog way back when (and many things since), and colleague of e-Patient founder “Doc Tom” Ferguson:
“Once a new technology rolls over you, if you’re not part of the steamroller, you’re part of the road.”
Thanks!!
What’s amazing is that Kathy is one of the most powerful public speakers I’ve witnessed. I never would have known that she suffers from stage fright. Her tips, therefore, have special resonance.
The Darwin and Brand quotes, while true, have to be wielded carefully. As Pew Research and other data shows, we have a long way to go before clinicians have to fear the steamroller.
Susannah, you make a very persuasive case by providing those slam-dunk statistics about cell phone and internet use nationwide (who knew that 50% of people watching videos online are viewing something educational/instructional?), demonstrating how avidly caregivers and patients seek out knowledge via these sources, and encouraging physicians to make a beginning (Google yourself and the meds you prescribe—your patients are already there). My favorite: your 7-word-limit advice nuggets. Working on one of my own.
I’m very lucky to sit side by side with colleagues here at the Pew Research Center who are collecting data and insights about a wide range of activities and topics. I then filter what they find through a health lens and share it here (and on Twitter). The online video report *just* came out so it was perfect timing. And now, today, we released new data on online dating (yes, there are health implications). Stay tuned for a short report on Snapchat and other “pictorial activities” in a week or so.
Please share the 7-word wisdom you come up with!
That statement: “The Darwin and Brand quotes, while true, have to be wielded carefully. As Pew Research and other data shows, we have a long way to go before clinicians have to fear the steamroller”!
No doubt this is true. But I think it hides another truth. It would be great to study systematically how involvement in a peer-to-peer community changes how individual patients interact with their physicians and the HC. My guess is that these become much better patients and generate a much better common experience with their physicians. In that case, if my hunch is correct, the physicians have nothing to fear, on the contrary.
I agree. That would be a very useful study.
And if I’m understanding your last point correctly, I also agree – it is not the physicians who have much to fear, it is those patients who do not connect with peer-to-peer health care resources who are going to be left out (or steamrolled).
Susannah,
Thank you for your blog post and presentation! As a clinician and health services researcher, I definitely see a role for social media in healthcare, particularly in engaging our patients in their own care and for providing support. The data about the widespread use of mobile phones hammers home this point. But even as the digital divide seems to be narrowing with access to mobile phones, there’s still a huge digital participation gap by socioeconomic status. I wonder what can be done about this participation gap and what if any role it would be play in getting patients from low SES households actively engaged in social media as it relates to health care.
Thanks, Oni! I loved sitting in on your seminar about using social tools to connect and serve women in the Bronx living with HIV.
Here is more data on low-income adults’ use of technology.
This is what the Pew Research Center can contribute to the conversation — data to show the possibilities for engagement via tech. What others must contribute is local intelligence, like the kind you and your colleagues collect by talking directly with people in the communities you serve, and strategies for increasing participation.
In case these are useful for gathering ideas, contacts, and more data: all the posts I’ve written related to HIV.
Further afield, but I think of interest, is a new report on online dating and relationships. Why? Because it tells us a few new things about how different age groups are using technology. For example: The median age for online dating site users is 38. The median age for dating app users is 29.
Susannah,
Thanks for your inspirational talk at Einstein. There was much buzz about increasing our use of social media with patients after you and Kevin spoke. The data about the use of mobile phones is exciting. We are looking at whether and how residents of the Bronx use social media so that we can meet their health care needs most effectively.
Thank you! It was amazing to finally get to your campus after months of correspondence and conversations. I’m looking forward to hearing what happens next — that’s what really matters — the choices that you and your colleagues make. Please keep in touch.
This was an amazing talk. I was riveted from the outset. I care for a low-income patient population at a federally qualified Montefiore health center in the Bronx. What I found really surprising were your statistics on home broadband and internet use by income level. I would not have guessed that such financially-challenged individuals would be so connected. Then again, I am constantly struck by how many of my patients use cell phones (and constantly frustrated by how often that use occurs during a visit … a discussion for another day). Regarding the statement that “80% adults with 1 chronic condition have internet access compared with 61% having 2+ chronic conditions”, are those statistics adjusted for age? (Chronic conditions increase with age just as I suspect internet unfamiliarity/discomfort does). Super talk again. Thanks.
Thanks, Sean!
It is pretty incredible to see how individuals and families stretch their resources to stay connected. I’m so glad I had the chance to share the national data and would love to be able to drill down to a local level — maybe someone reading this will know of a source of information we can tap into.
As for the chronics data: No, those figures are not adjusted for age. We have done the regression analysis necessary to isolate each factor and have found that age & education play strong & independent roles when it comes to predicting if someone has internet access and/or a cell phone. Living with a chronic condition has a significant, independent, negative effect on someone’s likelihood to have internet access, but we don’t see the same effect when it comes to cell phone ownership. The lower rates are more likely due to age (ie, the older someone is the less likely they are to own a cell phone).
Here’s our 2010 report on people living with chronic conditions:
http://pewinternet.org/Reports/2010/Chronic-Disease.aspx
The upcoming report will update that analysis and cover the same topics we covered in Health Online 2013 and Tracking for Health.
Susan, people like you and Kevin (and too many others around the world) are talking about this for years. In your opinion, how long it will be necessary to prove to healthcare professionals the effectiveness of social media? Thanks!
I read this comment on my way to (yes, yet another) symposium and thought about it all day.
We walk in the footsteps of the Moses generation, the pioneers — people like Tom Ferguson — who led us in the early days of patient engagement, even before the internet became our Promised Land.
Now I’m watching the Joshua generation, the builders, who are paving the paths that many feet have walked, building sophisticated systems based on the skunkworks created by their intellectual ancestors.
Why is it taking so long? Why does health care change so very slowly, especially compared with other industries which have been completely disrupted in the last decade? Why does it seem to many of us that clinicians are the last to know about the power of peer-to-peer health care, social tools, mobile connections?
Much to say about this, but I’ll start with: You can’t see it if you’re not looking. You can’t hear it if you’re not listening.
As a wise person once said to me: Keep shining the light on the path. Everyone comes to it eventually.
That’s what I hope the data I collect can do: shine a light on the path.
PS I hope my deep respect for clinicians comes through in this comment. They are looking, but maybe not seeing what we see, which means we have to do a better job of showing. They are listening, but may not hear what people are saying, so we have to do a better job of telling.
Bryan Vartabedian, MD, posted a thought-provoking essay today that pertains to this thread:
When Doctors Don’t Want to Participate
Please read the post, but here’s my comment:
I see two issues:
1) Answering the “why” — why should I spend time on this? Where is the evidence that it will be useful to me?
2) Answering the “how” — OK, I’m convinced, but how am I ever going to find time? I think I’ll give up before I start.
Here’s my attempt at the “why”:
https://susannahfox.com/2013/10/21/how-do-we-know-that-social-media-is-important-to-health-care/
Others can speak to the particular “how” for clinicians but I’ll share the reaction that I once got when telling colleagues in my field (research) about the benefits of social media, of listening as much or more than asking, of connecting directly with people you hope to understand better through a formal study:
“Oh, Susannah, we can’t do what you do. You were born this way.”
No, I wasn’t born this way. I worked hard this way. I spent a decade building my community, slowly, when nobody was looking, because I got a taste of how important it could be and never looked back.
So the question isn’t necessarily how to teach all of the above in 90 minutes, but how to give that taste.
Your preceding comment brings mindsets to mind: specifically “growth mindset” vs. “fixed mindset”.
It’s interesting to think about this post in conjunction with your just-released report on The Diagnosis Difference, showing the correlations between chronic illness and health information seeking behavior.
I think that is the most interesting aspect of the report, and I’m puzzling over why what I would assume to be a strongly motivating factor (having chronic disease) has a negative impact on using the Internet … I have some theories I will try to articulate in a blog post over the weekend.
For now, I’ll share links to 2 stories on NPR’s All Things Considered yesterday (which now have transcripts posted) that may be of interest in this combined context:
Why Are Seniors The Fastest-Growing Demographic On Social Media?
Helping Low-Income Seniors Build A Social Web Online
Thanks, Joe! I’m so glad you honed in on that point — it’s an important one. The new data is like a new temperature reading. We don’t yet know the source of the fever (why does chronic disease have this independent effect?) but we at least know the current state of affairs.
I just posted a “field guide” to The Diagnosis Difference if people want a quick overview. And I’m asking for help in collecting evidence for all those people who might glance at our findings and not grasp why anyone should care that most people living with chronic conditions do not yet use any of the social tools available to them.
Dear Ms Fox,
I really enjoyed your report as I am doing my master thesis on social media and healthcare. I am wondering if you are available in the next few months for an email interview to give me a few explanations and opinions as an expert for my master thesis? I would make it condensed and could give you a few weeks to do it if time is an issue. I am sure you are a very busy woman, but I would love your insight if you are willing to give it. Please email me for more details. Thanks!
Hi Andrea,
Thanks so much for the kind words. It may not look like it from my pace of posting here and on Twitter, but I’m on vacation through the end of May, working on a personal project, so unavailable for interviews, even short ones.
However, as a “public service researcher” I post almost everything I think about or have analyzed online, for free, such as all the research reports I’ve written for the Pew Research Center, as well as all the data sets, and this blog is a trove of material. And I love Twitter as a daily dip into the pool of inspiration, done on my own time, whenever the fancy strikes. You can feel free to quote from anything I’ve published as long as you credit me and, ideally, link back to the source.
Good luck with your work!
Dear Ms. Fox,
I hope all is well. I am highly interested in social media and health. I am a doctorate student and aim to do my dissertation on this interesting topic. Your work is amazing I am a big fan! I was wondering if you can direct me to national data sets that address this topic. I am planning to use secondary data for my research. Any recommendations or suggestions? Please let me know
Hello! Thanks so much for the kind words.
Check out the public data sets posted by my former colleagues at the Pew Research Center’s Internet Project:
http://www.pewinternet.org/datasets/
Unfortunately they have not continued the health survey work since I left. The most recent survey, I believe, is from 2012:
http://www.pewinternet.org/dataset/september-2012-health-tracking-prelim/
If other sources come to mind I will post them here. Are you on Twitter? I could share this question and ask people to connect with you there.
Thank you that will be really helpful. I really appreciate your cooperation and hope to find good datasets. Twitter account: @bncharge Looking forward to hearing from you.
Best, Noara Alhusseini