Count the e-patient takeaways: “What I learned going down an emergency slide”

Screen capture of emergency slide postSusannah Fox, long one of our most popular and prolific bloggers, is roaming to wider audiences these days. She’s entrepreneur-in-residence at Robert Wood Johnson, she has her own site, and she’s just started writing on the hip-hip site Medium.com.

We’ve long said that there’s nothing unique about being an engaged, empowered patient (e-patient): it’s a logical extension of just being alert and responsible for yourself. (That goes all the way back to our progenitor “Doc Tom” Ferguson being medical editor of the Whole Earth Catalog in the 1980s.

Well, Susannah’s finally found time to illustrate this big-time by posting about the time in 2011 at Dulles International Airport when, just after leaving the gate, the captain came on the intercom and calmly said they needed to evacuate. Down the slides. Because an engine was emitting smoke.

What happened will be a credible warning to any air traveler – and also to people who’ve had a rude awakening in a healthcare setting, where they discovered the need to keep their eyes open, keep their mind sharp, and think for themselves. Please go read it, and see if you can list (there or here) the lessons for e-patients.

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19 Responses to “Count the e-patient takeaways: “What I learned going down an emergency slide””

  1. Susannah Fox says:

    Thanks, Dave! Medium makes it easy to write & edit collaboratively — and the layout is gorgeous — but there isn’t a culture of comment threads. I would LOVE to get a conversation going about the questions I raise:

    Wouldn’t it be great if there were something like a matching service for people going through a tough health care situation? Such things do exist for certain conditions, but uptake is still low. How might we change that? How might we spread the lessons learned by people with rare conditions to those who are dealing with common, but just as life-changing, diagnoses?

    What if people had more ways to tell—and archive—stories like these? How might we create the equivalent of a pre-flight safety demonstration for patients and family caregivers, to acknowledge the importance of being part of a community of peers?

    While we’re at it, why don’t we create a petting zoo for tools and technology that we might someday need, even if we hope we don’t?

    I would like to try out different monitors and lifts before I need to install any in my home. How about a gallery of home care “hacks” — the inexpensive, elegant work-arounds that people create, often for not much money?

  2. Susannah Fox says:

    Jeremy Shane asked on Twitter: “Why do you think matching services don’t exist?”

    It’s the central motivating question of my current work, so while I wish I had a short answer suitable for a tweet, I do not. Stand by for a longer answer (gotta get another cup of coffee first!)

    • Susannah Fox says:

      OK, here we go.

      First, I should say right up top that matching services do exist for some health conditions: PatientsLikeMe is probably the most famous example of a health platform inspired by online dating. There are many other forums for finding your match — Smart Patients, Inspire, thousands of Facebook groups… if you have a favorite, please add to this list.

      And I’m intrigued by a comment that Bart Windrum made on my Facebook post about this: he has been part of an online community of people who modify (“mod”) their recreational vehicles. It sounds like the tip trading that goes on is a lot like what I’ve seen on patient and caregiver support groups: specific, actionable, real-time advice from peer experts. Dave chimed in that his path to ACOR was smoothed by his long experience in Compuserve forums. I love that and would mark it as an “opportunity” in our list of factors that will drive or block the growth of health-related matching services.

      Because I’m an online pack rat, I found this previous list of road blocks and opportunities:

      Roadblocks:

      – 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

      Opportunities:

      – 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

      To this list I would add:

      Road block:

      – shyness, introversion, a sense that you shouldn’t share your personal problems in public

      Opportunity:

      – the cultural changes that are happening which encourage and enable the shy to interact online

      PLEASE add to my list or push back on any of the items. I would love to hear what other people think about these issues.

      • I’m immersed in events through Wednesday. I hope to sneak gaps of attention to respond here, but if I don’t, yell later – I have lots of thoughts.

        Newton said you start by collecting examples, then you hypothesize, then you test the hypotheses – dat’s science, baby. Can we start a collection of specimens of communities that have grown into something useful?

  3. Paul Wicks says:

    Another barrier for you which is a double edged sword – when the system works, you don’t have to share your experience.

    Let’s say I’ve been suffering with a medical condition that’s been hard to get diagnosed, my doctor’s not given me a lot of helpful advice, and I’m suffering with it to the point that I’m going to start experimenting with problem-solving. Now let’s go into two scenarios.

    Scenario A: Me being me I’m the type of person who would probably plug into an online community, start sharing my experiences with others, and trying to find more guidance. Along the way I’m interacting with peers, offering my support, creating new knowledge, and building the network. Through my own journey of self-discovery, over the course of years I finally realize what I needed to do, climb the peak of self-empowerment, and become a beacon of shining awesomeness that inspires others to follow in my footsteps.

    Scenario B: I quickly stumble upon what turns out to be the right solution. I try it out, it works, I offer praise to the Internet gods, and I go back to my life and forget about that community forever and ever.

    As it turns out, Scenario B happened to be about a year ago. I paid it forward a little, I made a donation to the website that helped me, but I’ve moved on with my life. I don’t self-identify as a patient with that disorder, I don’t check the forums, I’m not going to go spread awareness on Facebook, but I’ve achieved the outcome I wanted. The alternatives to this self-management would have been the NHS shelling out tens of thousands of pounds in surgery, me being off work for a few months, agonizing pain, all sorts of good stuff. So, peer support worked for me, but I’m not as fully enmeshed in the system as if it hadn’t. And that’s one of the challenges we have – to achieve great research studies we want people to come back and share longitudinal data, but if they’ve addressed the major concerns they were coming to us for then they go back to being Julia from Accounting or whatever, which is ultimately what we all wanted but it goes unmeasured and if you like, “unclaimed as a win”.

    Put it another way, to use your plane case study. The guy at the front of the plane yelling “THIS WAY” did a great thing. He also stopped the second-most-activated passenger down at the other end of the plane from yelling “THIS WAY” and doing his own great thing, because guy number 1 solved the issue for everyone else faster.

    Depends on how sustainable you need the system to be, what kind of problems you’re trying to tackle, and whether you’re trying to prioritize building a community or solving problems.

    As you might expect, PLM is looking into other ways to figure this out!

    • > stopped the second-most-activated passenger
      > down at the other end of the plane from
      > yelling “THIS WAY” and doing his own great thing,

      Boy, I don’t see it that way in my experience! What I’ve seen is that the second guy and many others pick up the tip and pass it along next time.

      Or are you saying you’ve seen that people stop thinking when a first person solves something?

      btw, lately I’ve been replicating my ACOR cancer patient experience lately with Prius user forums. Far easier to find what I need there than to find it from Toyota. That experience strongly parallels what Susannah’s research found in patients googling. Solved one just yesterday.

      • Paul Wicks says:

        Dave,

        I hadn’t really considered that there might be a next time the plane needed to evacuate let’s hope that’s something they don’t experience that again for a little while!

        No, my claim was that the person who finds the info they need straight away doesn’t necessarily share and contribute actively in a community, they get the info they need and go about their business. The second most activated guy leaps down the slide like everyone else (though I take your point about passing on the message). In my own case the reason I’m not out there being e-patient Paul is because the advice of another patient like me allowed me to self-manage my way to wellness. I’m grateful for that but rather than focus in on my own condition I have just gone back to doing what I was doing before in my life (which is not entirely unrelated).

        We know from forums the ratio or lurkers to posters, for instance, and on PLM we can see the ratio of people that share a little data, a lot of data, as well as forum posters, responders, etc. Because only a limited subset of people sign up and participate it limits our ability to do truly epidemiologically representative research. At our most buzzing we’ve had, say 10% of everyone with ALS in North America, 5% of MS, 1% of everyone who got a kidney transplant in 2009, big numbers compared to a lot of studies and sites. And relative to a traditional PhPBB/VBulletin message board those numbers are huge, and our own forum is very dense with qualitative gems and inter-connected communities.

        But it depends what you want and when you want it. Eysenbach’s “Law of Attrition” applies to all e-health communities and interventions. If you want to overcome the criticism that only a small subset of patients stay engaged you can’t just argue it, you have to prove it. JMIR recently carried a piece about Renal Patient View (http://www.jmir.org/2014/10/e241) that’s informative in this regard – major drivers of engagement with the portal were being registered on it and trained to use it by nurses (rather than being left to explore it) and checking their lab results on it (a feature not available on most e-health systems).

        So what I’m saying is, the people who participate actively are fantastic – they’ve undoubtedly saved many lives and are unsung heroes of healthcare (who I do my best to sing about). But if conclusively proving the *value* that they provide is dependent on seeing how they affect everybody else that touches their information, support, advice, then you need good outcome measures on “everybody else” because otherwise you won’t be able to see these benefits, quantify them, or one day even build a learning healthcare system around them.

        That’s why in an earlier post of Susannah’s I referred to these gems as “gift(s) that can’t be repaid”. I’ve seen evidence of them in person, when people tell me that BUILD or PLM changed their lives completely. When I look at their site activity levels I’m often surprised to find they never posted, or they logged in twice and that was all it took – if I’d never met them in person the value would have gone unknown and unnoticed.

        I think we can change that though, through tighter integration with existing sources of data, the entry of which can otherwise be laborious. Let’s say we were engaging with patients of a large health system and could know in a lot more detail what the subset of patients was that it was engaging in the platform, it’d be much easier to see objectively if they were actually having improved outcomes, and if we could upgrade the poor data storage of traditional portals through our visualizations, for instance, it’d add value to the community too.

        To go back to the airplane again, the reason it’s hard to get paid for outcomes is just how much work is involved in measuring a non-mechanical humanistic intervention. In order to prove out that e-health (represented by the engaged passenger) works, we’d have needed seat sensors on planes (or I suppose you could do it with RFID chips in the tickets or something) and know with confidence through modeling and prior cases that it takes say 90 seconds to clear the plane, that due to the issues of demographics and a door failure that things were going badly, and that an intervention made a significant delta in the outcome of interest (passenger outflow), which we’d have to get at somehow maybe with constantly streaming video cameras in the plane picking up the shouting and a change in herd behaviour. In that case I think shouty passenger guy would rightly be celebrated as a hero who shaved 30 seconds off the de-planing time with his action, and the aviation system would learn from him and maybe like we’ve been saying earlier, identify folks like that and sit them on exit rows with some training. I hope they choose tall people =)

        But the e-health situation we’re in now is actually still pretty much like Susannah’s story. It’s a story, on a blog, that’s compelling and interesting, but isn’t on the desk of the FAA, hasn’t made headlines on every pilot’s magazine, and isn’t being incorporated into air steward training school. I’m certainly no expert in this but from what I’ve read you need to be able to evacuate in a simulation in less than 90 seconds. Here’s a video of it happening (https://www.youtube.com/watch?v=_gqWeJGwV_U). The volunteers all know what to expect, nobody’s drunk, nobody’s scared for their lives, nobody’s disabled, nobody has the wrong kind of shoes, nobody has slathered caesar dressing down the emergency slide…

        I’m happy to bet that if I could make a door handle that objectively opened 3 seconds faster, I could charge a fortune for that to the airline industry, because it’d help them pass the artificial simulation benchmark upon which their launch plans depend. But if I built a network of activated flyers with additional training and support to act as expert flyers that could make more of a difference in the unmeasurable “real world” to help other passengers out there in the wild, my plan would never leave the runway…

        Best wishes

        Paul

      • Holy cow, Paul, what a tome-comment! Fascinating.

        Reality check please – or perhaps context check: in a strictly patient POV, if someone’s life got changed for the better in an almost-invisible exchange, that’s obviously value. So I’m guessing that you’re looking for something that could be proven as a dependable result, so investors or policy people feel confident. Am I on track?

      • Paul Wicks says:

        Hi Dave,

        Not sure if I’m replying in the right place here (commenting is harder than Tweeting!) but, yes, from the patient POV clear value has been created. But if you want to support, sustain, and grow the system that created value, here is a brief list of the types of people I have to persuade on a daily basis that the quantifiable value is substantial:

        * Myself
        * Patients
        * Carers
        * Clinicians
        * Policy people
        * Pharma people
        * Journal editors
        * Payers
        * Hospital groups
        * Journalists
        * Investors
        * Our own employees
        * General public

        Pretty much all of them will rate certain types of evidence higher than others, and many of them will find well-designed studies with good outcome measures in a representative sample to be a lot more compelling than the individual anecdotes of value. Unless it happens to them in which case throw all that out the window they’ll just get it =)

        Paul

    • Susannah Fox says:

      Yes, this is a serious barrier. And one that has made some people, including clinicians and other health professionals, say that the whole idea of peer to peer health advice not worthy of attention. “Only the people who don’t get better are in the forums” is a common refrain that I have heard.

      What can we learn from forums where people DO stick around?

      I’ve seen it in smoking cessation groups (a sense of service is sometimes cited), rare disease groups (families with a re-occurring genetic condition are a good example), and food-allergy groups (constant vigilance is required, so membership and commitment to learning is lifelong).

      • > “Only the people who don’t get better are in the forums”
        > is a common refrain that I have heard.

        Boy, we need to get Gilles Frydman, Alicia Staley, and a zillion other people in here. My ACOR kidney cancer group grew out of the dedication of Steve Dunn in the 1990s – his hand-coded page still survives as a legacy.

        Honestly, people need to get their heads out of their “I’m best when I’m skeptical” butts. Healthy skepticism is important but it MUST not become rigid skepticism, or new realities will be ignored.

  4. Great read Susannah. I remember when this happened and recently recalled your story when listening to a safety briefing. I often sit in the exit row (as often as I can). When I do, I always figure out how the exit door on this plane opens. Doesn’t everyone who sits in an exit row? On that recent flight I mentioned to another passenger in the row that I (like you) wish there was a place in the airport where I could go to get hands-on training in opening a variety of doors, actually getting the life vest out of it’s shelf below my seat and inflating the vest. Going down the slides would be a big plus.

    The passenger next to me, a security expert, was quick to point out that this would be a security risk. “The bad guys” could learn a lot about how to disable a plane if they had that kind of training. My response — perhaps we have a way of further identifying, not the potential risks, but the people who we know are not. I went through Global Entry advanced screening to make airport security faster. Perhaps we have a way of giving those folks extra access to safety equipment.

    What does that say about healthcare? I have heard some say that there are risks involved in allow patients and care givers to have a say in health care. Whether they decided to take extra steps or not, those who have experience with a health condition or are care givers for someone with a health condition _have_ advanced screening and I, for one, think listening to their sage advice makes a huge difference in health out comes.

    BTW, in my book there were at least two VIPs on that plane and you, my dear, are one of them.

  5. Nina Sandlin says:

    My dad was an OSHA safety inspector, and was always noticing stuff. Years ago I got in the habit of reading the safety card, finding the doors, and physically mimicking with my hands the motions illustrated to get them open (before ignoring the safety presentation). I figured I would remember that way – because despite all the labels, working those doors is just not that obvious. … There are so many good things in this essay. But especially the analogies with coping with health care – because the adult diaper, the funky forms and jargon, the wrong-sized pills: those things are not that obvious.

  6. Dianne says:

    Susannah,
    A great article! I think it would be a great improvement for airlines to require those in Emergency Exit rows to go through a “training” prior to boarding that allowed each to practice opening the doors, etc. Each person would need to arrive early in order to get through the training and have their boarding pass stamped as “passed”.
    Regarding healthcare, you are so right! We need to share the things we’ve learned and experiences we have gone through. Brought my husband to emergency a few years ago… thought he was having a stroke… ok, I know should have called an ambulance, but he was fighting me all the way, even wanted to drive himself! Anyway, dropped him at emergency door, went and parked the car and came in to find him there filling in paperwork. They had a “lay” person at the desk who didn’t understand the severity of the situation. I took over and went behind the doors without approval to get a medical professional to get him inside. All turned out well, no stroke. The next day, I called the hospital and s/w the person in charge of the Emergency Room to discuss what had happened… so they could follow up/educate everyone they put at the door on protocol. Lessons learned: 1. NEVER drive someone who thinks they are having a stroke or heart attack – call 911, 2. Always, follow up with those in charge when serious protocol’s are not handled properly, 3. Be informed
    Thanks Susannah!

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