Save us, Facebook

Facebook logoThe Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way.

Facebook should support those communities, listen to their users, and create a safe space for health on their site.

Two examples of Facebook’s direct effect on people’s well-being:

Erin and DrewErin Moore is the mother of four children, one of whom is living with cystic fibrosis (CF). She is a member of a Facebook group called CF Mamas, a thousand parents who talk online about everything from recipes to research updates.

One morning, Erin noticed that a mom who lives in her area had shared that they were anxious about the effects of sedation required for her daughter’s CT scan, scheduled for later that day. Erin quickly posted a reply to let her know that her son had undergone a CT scan without sedation at the same hospital, suggesting that she at least ask about that possibility. The mom saw Erin’s note and, when she asked the clinical team, they readily agreed to try it. Thirty minutes later, the mom posted on Facebook that the scan was complete and she was on her way home with her daughter. Not sitting in recovery, not waiting for a doctor’s evaluation before discharge, but in the car, on their way home.

“This mom, like many moms, didn’t even think to ask about the possibility of trying to do the scan without sedation,” Erin recalls. “Or perhaps she did, but the doctor who ordered the test was prompted to schedule time for sedation and everyone just assumed that that’s what had to happen. No one expected or even fully appreciated the value derived from that innocent post on Facebook.

Another story:

“Lana,” who lives with mitochondrial disease, is an active member of a private Facebook group of people who share her diagnosis. Some of the members have become experts in drug interactions particular to “mito” and offer guidance to others based on their hard-won personal experience.

When Lana was facing surgery, she received the following technical advice from a Facebook friend:

Insist on talking with the anesthesiologist before they take you back. Response depends on the specific biochemical defect. Any risk of FOD or complex1 deficiency and propofol should be avoided. Avoid muscle relaxants if possible. If given, take MH precautions unless you have done OK with succinylcholine in the past. Narcotics are usually OK and can help decrease use of sedatives.

Lana took the information to her primary care clinician who had been searching the scientific literature, in vain, for practical anesthesia requirements for a mito patient. As Lana tells it, “All the journal articles were 20 pages of ‘theoretical concerns’ that gave no indication of what they should actually be doing in the operating room.” They worked together to independently confirm all that Lana’s friend had shared in her note.

When Lana met with the anesthesiologist assigned to her case, he admitted that the only thing he knew about mitochondrial disease is what he had read on PubMed in the few minutes before their appointment. He was grateful for this expert consult. Lana smiled, knowing that the “consult” was from a college student who, though a biology major, has no medical training beyond the years she has spent in treatment.

These two stories illustrate an important truth:

People rely on trained professionals to diagnose and treat their conditions, but they crowd-source the questions that spur clinicians to operate at the top of their training.

Access to each other supercharges access to information. That’s the real promise of the internet.

These are not isolated cases. In a national survey conducted by the Pew Research Center in 2012, U.S. adults were asked to think about the last time they needed health advice and to whom they turned for information, care, or support. Clinicians were the most popular resource (70% of U.S. adults), followed by friends and family (60%), and then others who share the same health condition (24%).

Most of those conversations happen offline, but quite a few happen online, especially among family caregivers and people living with rare and chronic diseases – the alpha geeks of health care. They are looking for the “just-in-time someone-like-me” who can help them make better health decisions. Or simply help them get through the night. And, for better or for worse, Facebook is their gateway.

The silly and the serious are thrown together on Facebook. Vacation photos share space with hospital bedside updates. And the platform is specifically designed to attract people and keep them on the site. As one patient activist told me, “People are already there. You don’t have to pull them in.” Newcomers to a community are more likely to connect with someone who shares their condition or symptoms if they have a big pool to dip into at the start of their quest.

I’m not a fan of Facebook as a health platform. The company’s shifting policies on anonymity and privacy controls sow confusion and distrust. Facebook is also not set up to track health data or even to effectively archive discussions. One Facebook health community member told me, “All of the information that people share is practically getting dropped into a black hole.”

There are many other health community platforms that are designed more thoughtfully than Facebook, with features like PatientsLikeMe’s personal data-tracking tools, Inspire’s co-branding with advocacy organizations, or Smart Patients’ cross-community conversations. Even a creaky old Yahoo! Group has better archives than Facebook does. But none of them have Facebook’s reach.

Here’s my hope: that Facebook expands their circle of business advisors to include a few of those millions of people who are innovating their hearts out, building health communities on a platform that isn’t designed for them to do so, and volunteering their time to help and be helped.

I also hope that we can assume abundance as we go forward: an abundance of communities and tools for helping people to connect with each other. Facebook is one of those tools, but not the only one. (Lord help us, I hope it will never be the only one.)

We have an opportunity to create real and lasting change by helping health care’s greatest untapped resource – patients and caregivers – contribute what they know and connect with each other. Let’s help people supercharge their health.

24 thoughts on “Save us, Facebook

  1. Susannah,

    great article, as always.

    One tiny comment about a single adjective found in a short sentence:-)

    —————— Quote ————————
    These two stories illustrate a new truth:

    People rely on trained professionals to diagnose and treat their conditions, but they crowd-source the questions that spur clinicians to operate at the top of their training.
    ——————— End Quote ———————-

    I think that “new” doesn’t belong in that first sentence. What you describe is what people who belong to listserves, AOL groups, compuserve forums, etc. have done now for close to 20 years. The FB groups are just one more iteration over the format of online medical support communities.

    • Love the edit! Crossing it out now. You are absolutely right. This is not new. It’s as old as the internet — and even older if we start at the beginning of patient empowerment.

      It’s funny how the moment after publication, you get a new idea. Just added this new paragraph at the end:

      “I also hope that we can assume abundance as we go forward: an abundance of communities and tools for helping people to connect with each other. Facebook is one of those tools, but not the only one. (Lord help us, I hope it will never be the only one.)”

      Thank you!

      • If the greatest expert in our field makes this mistake, then maybe it’s not a mistake!

        I mean maybe it’s the perception that is new. Or more precisely the strength of that perception. Yes, 20 years ago, the people in these groups already understood their value. But no one was paying attention. And most of the experts who paid attention had negative comments about these communities.

        Now that patient engagement is all the rage, every one is paying attention and is trying to figure what this new thing is. It’s a perfect situation where suddenly the old is really as good as new :-)

        • I don’t know about being the greatest expert, but it is an interesting line of questioning to pursue about why I wrote it.

          I think something does feel “new” about it, even after 20 years. One reason is that so many people are recognizing it for the first time and I try to see the world through their eyes and respect their perspective.

          “Wow!” they say, “this is incredible stuff!”

          “Yes, welcome to the party!” I imagine myself and others replying, “We’re so glad you’re here, we’re just getting started. Please come in.”

          “Wait, there are a lot of people already here and they look like they’ve been here a while,” the newcomers say, looking around with wide eyes, feeling a little awkward all of a sudden.

          “No, don’t worry, you’re not late. Nobody is ever late to this party and it will never, ever stop,” I reply, shoving the full recycling bin of empty wine bottles out of sight, and giving them an encouraging smile. “Plus, this is your song! Get out there and dance.”

          And hopefully everyone, everywhere some day will join us, just like that. And we’ll learn from every one of them.

          • That last sentence!
            “And hopefully everyone, everywhere some day will join us, just like that. And we’ll learn from every one of them.”

            That’s so true. These communities do not rely or foster hierarchical structures based on how long people have been members. They are the perfect meritocracy, where microexperts rise to the top for specific conversations while being listeners and learners of other microexperts, specialized in different topics. The beauty of peer-to-peer healthcare is its dynamic nature, embracing newcomers and helping old timers to remain fresh in their knowledge of a specific condition. Part of the magic is the remarkably low bias demonstrated by these communities

          • One last comment! When you say “I think something does feel “new” about it, even after 20 years” I believe that what’s new is the scaling up of the whole world of medical support online communities thanks to FB.

            Until FB helped people created the groups no one knew if what we had done on a small scale using listserves would scale up at a global level and really enter the realm of public health doing so. We now know that, indeed, the communities can scale up both individually and at a global level. It’s exciting. People with serious and complex conditions have a growing number of avenues to get the support and information they need. The various platforms have different strengths and people are smart enough to use all those that fit their particular needs.

  2. Hello Susannah,
    I really like your articles and passion for health care and health communication. I recently completed my Masters in Communication (Major: health communication) from Rutgers University, and I have cited you in many of my papers and research projects on online health communities (OHC).
    My focus, while conducting an integrative review on OHCs, has been on the communication behavior of patients with chronic illnesses, the sustainability of these forums through stages of a person’s disease, and the role of community and individuals participating in online communication.
    You make a great point in how Facebook has been used and how OHCs and support groups have been prolific because of “just need someone like me to give me an opinion/advice on my condition” and knowing that Facebook caters to so many of these health groups, it should step up and be more responsible.
    Great post!!

    • Thank you! I love hearing that my research has been useful to you.

      May we all see the future unfold how we would like it to be — and work really freaking hard to make it so :)

      Congrats on getting your degree!

  3. Great post Susannah! I just joined a “new” group of pediatric brain tumor families – one of those creaky old yahoo groups that continues to serve its valuable purpose. Roni at Smart Patients actually hooked me up with it since there wasn’t a blessed thing for this condition in the other communities. BTW, as you know is still a lovely community of about 4,000 families facing Congenital Heart Defects (the most common and deadly birth defect), sharing wisdom on everything from which pediatric heart surgeons actually do Norwood procedures to how to handle constipation in our little ones. I love these people, most of whom I have never met, but consider friends, allies, and experts. Annamarie, 1in100 and Newborn Foundation

  4. > Facebook is also not set up to … archive discussions. One Facebook
    > health community member told me, “All of the information
    > that people share is practically getting dropped into a black hole.”

    Welllll, let’s do the time warp again. From “Doc Tom” Ferguson’s e-patient while paper, page 47:

    During his wife’s treatment, Frydman became an active participant in the BREAST-CANCER e-community. He was impressed by the quality and complexity of the information it provided and by the dedication of the list’s organizers and core group of active members, but he was horrified to discover that once messages were sent out to subscribers, they weren’t saved and archived.
    “All this material, which had been so valuable for us, was simply disappearing,” Frydman says. “Once it went out to the group, it was gone forever.”

    And while we’re pointing out to Facebook what would be useful for peer-to-peer miracles (and I agree), let’s add what makes an archive useful: search. C’mon, guys, we need search.

    If you want to be the only ones who have the data and can search it, then you are the enemy, and you will be forcibly keeping yourselves apart from being trusted. All you need to do is “gimme my damn [posts]” in a searchable form – ideally taggable.

    (Personally, I wouldn’t trust the Zuck any farther than I could throw him, and I’m sure he’s not surprised or concerned to hear that. But as I said in early 2009, personally I’m more interested in seeding new solutions, which is why I tried Google Health back then.)

    • Yes! So true. I love that you know the e-patient book so well that you can bring up those cites.

      My hope: once people recognize the potential of a huge market, they will invest in it, nurture it, serve it. And profit from it. Look at Zappos, Warby Parker, Uber… In fact, Uber might be an apt example — a company that solves a problem so well that some people are willing to check their values at the door to access it.

      And, to clarify, all three of those companies take advantage of the “assumption of abundance” — that there are many people who need X (shoes, eyeglasses, rides…) and are not being served by the current suppliers because of Y (size issues, convenience/time constraints, locked-up local market…) They made the market larger — or recognized that the market is much larger than the one that established suppliers were serving. That is health care all over, wouldn’t you say?

      • Re Uber: “some people are willing to check their values at the door to access it.”

        Not so much, suddenly, it seems: did you see that The Scoblizer himself said Wednesday that Uber CEO Kalanick has to go because of his disgusting behaviors (and his company’s threats) against women?

        I personally was turned off by Uber when I read some months ago about how they’re not just disrupting taxis, they’ve been moving to control capacity to drive up prices (e.g. keep drivers off at peak times), and not being honest about it.

      • > They made the market larger — or recognized that
        > the market is much larger than the one that
        > established suppliers were serving.
        > That is health care all over, wouldn’t you say?

        As you probably know, that’s one of the key characteristics of true disruptive innovation. (Most people who blather “we’re disrupting…” have never studied the subject. Having something new isn’t disruptive. “Dis-integration” gives more power to the person who has a problem, thus taking power away from the people who had been bunding things into old-style solutions.)

        Last year in Iowa I spoke at the same event with Jason Hwang MD, co-author of The Innovator’s Prescription (the healthcare disruption book). In reviewing the history of computer miniaturization and disruption, his talk noted that in every wave of disruption, even though it brought price cuts, the total spending on computing increased, because although the establishment always thinks it knows more than dumber people do, it turns out the “dumber” people are quite happy to grab fractions of the establishment and make it do what they want – in huge numbers, which in turn creates an unprecedented audience (with different characteristics than the previous generation).

        That part of disrupting healthcare is already evident in your anecdotes about patient communities discussing things that don’t even exist in academia or its literature.

  5. Facebook has always frustrated me because it is too easy to dump valuable information in these groups for it to never be seen again. Its tragic to think of all the data that has been lost even though people have the best intentions in sharing when they post their information. But it seems impossible these days to establish an online presence without at least promoting through Facebook. It seems to me people like the speed of Facebook and the brevity – you can drop one or two sentences and get a response rather than take the time to construct a well thought out conversation.
    I’m fortunate to be part of a new initiative with Acclerated Cure Project and the iConquerMS™ patient portal that was funded by PCORI. It’s all about patient-centered research and even though we have a web presence, we recognize we will need to recruit using Facebook among other tools. (I’ll write to you about this separately- it aligns perfectly with your work).

    Interestingly, there are many people who object to sites that openly say they gather health information for research and commercial purposes but willingly and without a whole lot of thought, throw their personal information to the winds of FB without giving it much thought. But that is probably another topic, too.

    And I love the ‘new’ discussion – experience and perspective colors everything.

    • Thanks, Laura! I’m intrigued — please do email me: susannahRfox at gmail (note the middle initial). A warning: I’m traveling and giving thanks and on deadline (in that order) for the next couple of weeks, so hopefully we can trade “homework” and connect for real in December.

  6. Susannah,

    Great balanced, motivating post.

    There’s also something important in there that I picked up as an incumbent in the health system which is that when given the same information we have, patients often choose the less intensive approach, as demonstrated in the CT scan example. There’s all this myth/lore about “patients want champagne care, all the time, their demand is insatiable / it’s responsible for the high cost of health care,” and then we learn, by listening, that patients are human beings just like us who want to minimize their use of health care to achieve maximum use of their bodies/lives.

    Thanks again!

    • “Motivating” is right up there with “useful” as one of my favorite compliments. Thank you!

      And yes, the truth is out there. The more we listen to patients and caregivers, the better health care can serve them. Shine on!

  7. Susannah Fox

    We agree and we are trying to do “the right thing” with our new services at Here is how we position and what we do… I hope for your support – we need users, advocates, evangelists, organizers, and a CEO with a funded launch team. Try our services and let us know how to make them better and friendlier. They are for everything serious in our lives.
    Best, Mo

    Facebook and Yahoo are for fun sharing and entertainment

    Twitter is for being heard

    LinkedIn is for career growth

    Salesforce is for driving activity

    uCaring is for everything serious in every day life, for everyone,

    – uCaring addresses the needs and concerns we have in each of the roles in life

    – Roles in life are associated with groups: Family, Neighborhood Watch, residential community, civic organizations, work place, co-workers, school, causes, clubs, teams, – automate one or more roles in each group to know more, do more, be more productive, worry less,

    – uCaring Community, Form, Blog, and Informing with alerts, notifications, and messages

    – Personal Safety including risk awareness and management

    – Help and Rescue options for Medical Crisis or Threatened Harm

    – Monitoring well being – Automated home alone Remote Care Giving, Children, Seniors, Patients, Post-Op. Engages, acknowledges, escalates as needed to address needs, concerns,

    – Protecting – Self, home, people, property, Campuses, Transit Systems

    – Informing – Messaging, IM, IM Conferencing, Geo-Publishing/Tagging

    – Scheduling – is also an input for automated rule-based monitoring for exceptions, with predefined responses and notification

    – Predefined event outcomes respond to achieve best outcome, or escalation be to human decision maker

    – Peace-of-Mind – Knowing people are safe, well, on the job, the right person at the right location, doing the right things

    and more – we want safety and productivity in all parts of our lives: home, school, work, play. Safety is critical to fairness and a level playing field in life for learning, earning and prospering.

    • Thanks so much for sharing your vision for uCaring. While I can’t lend my support, I’m very happy to share my community — welcome! Hopefully someone reading this will be inspired and get in touch or comment with their feedback.

  8. In the FB Groups, how long are the comments archived? I remember having a minor problem searching back through one a few months ago. I think I went back 2 months to find what I was looking for.

    Also, are there any 3rd parties archiving the FB Group info?

    Does use FB data? (It doesn’t appear as if they do from the website.)

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