The Future of Health: Robots, Enchanted Objects, and Networks

I have seen the future of health and it’s networks (with apologies to Lincoln Steffens).

Chronic disease is exploding in the U.S. The number of primary care health professionals is declining. Behavior change is difficult. But what are we going to do about it? Here are three ideas I’ve brought back from my travels: robots, enchanted objects, and networks.

The most radical idea I’ve heard was proposed at one of the most staid events I’ve attended: the Connected Health Symposium. Roll the tape:

Joe Kvedar also blogged the speech: “Emotional Automation: Bonding with Technology to Improve Health.” Check out this idea:

Can we set up systems that are extensions of our providers that will allow patients to feel cared for by their doctor but be interacting with a piece of software or a robot?

Continuing this theme of interaction with inanimate objects, watch David Rose talk about GlowCaps and other enchanted objects at Mayo Transform 2010:

Or just read his fantastic summary in 131 characters:

Smartphone health apps won’t be used daily. Self-report fails. Texting programs annoy. Enchanted objects will have the most impact.

Now for the third idea: Hands-on care by health professionals can’t scale. One-on-one advice from professional intermediaries, like librarians, can’t scale.  Networked peer support, research, and advice can scale. In other words: Altruism scales.

My inspiration for this idea comes directly from the work of Nicholas Christakis and James Fowler, who observe that altruism spreads in networks, but I’m adding my deep knowledge of consumer behavior online, which most recently got pushed and prodded on a panel about patient communities.


Can a mobile device be a comfort object, akin to Joe’s pet rocks and Tamagotchi? (See also: the teens example in The Power of Mobile.)

Is it possible to quantify the return on investment on love, whether it’s delivered in person, over the phone, through a screen, or… who knows what’s next?

Is it time to bond with technology to improve health?


Posted in: hc's problem list | patient networks | reforming hc





40 Responses to “The Future of Health: Robots, Enchanted Objects, and Networks”

  1. Susannah,
    Once again you’ve written a post that expresses thoughts that are top of my mind, and have done it so well.

    Check out the article in today’s Boston Globe titled “A robot exhibits bedside manners–and ethics”: ( that reports on an experiment by a U. Conn. philosophy professor and her computer science professor husband that uses a robot designed by Aldebaran (, a Paris-based company.

    I suggest we plan an onsite visit to Aldebaran. D’accord?

  2. Welcome to 2030 and the world of Enchanted Objects.

    You wake up in the morning at 6:30 from the gentle pulsing of an alarm clock that glows brighter and brighter, getting louder and louder with each passing minute of sleep past your alarm. Since “snoozing” has been shown to be empirically bad for your body, there is no snooze button.

    You stumble your way into the bathroom where your toothbrush reminds you with a little tune that you’re brushing too hard (again!), and refuses to turn on until you’ve promised it you’ll brush more gently. The GlowCaps from 5 different medications you take all pulsate rapidly, reminding you to take them all now. You take 3 of them now, and put the other two in your pocket for later, because they should be taken after food (and you haven’t eaten yet).

    While closing the drawer on your medications, you notice one more thing too — your condom pack is also pulsating red rapidly. You haven’t had sex with your wife in two weeks, and this is a reminder that a healthy sex life also has been demonstrated to relieve stress and results in better feelings of well-being. Although you ignore the pack for now, the pulsating red pack’s image will be with you all day.

    You glance at the other 4 glowing objects on the bathroom counter, but you can’t remember what any of them are there for… and they may be for your wife, anyway, so what the heck, you ignore them today.

    You make your way downstairs to breakfast and reach for some eggs and bacon in the refrigerator, but the meat drawer won’t open. It’s no wonder! The Smart Fridge 4000 knows you shouldn’t be eating bacon (it’s bad for you!), so it won’t let you at it. The butter’s locked away from you too, so it’s frying an egg the healthy way.

    The eggs would’ve been off-limits at one time, too, but the contradictory research now suggests eggs are okay for you, so the Smart Fridge 4000 lets you have 2. For now. The Smart Fridge 4000 gets the latest research updates daily, so tomorrow there may be no eggs for you.

    When you get in the car (which starts automatically, naturally!), it tunes automatically to a radio station meant to promote a stress-free driving environment. It’s besides the point whether you like it or not — the research doesn’t lie. The car is pre-programmed to only drive at a top speed of 45 MPH, because that’s the speed at which the least amount of accidents will occur. And if one occurs, you will be in the least amount of harm, empirically-speaking.

    While on your drive to work, you notice the pills you put in your pocket are becoming red hot. Ah, you forgot to take them!! You pop them in your mouth and they immediately cool down as you swallow them. Thanks Smart Pills!

    When you get to work, you stop by the kitchen for your morning coffee. The Zzz.CoffeeMate.Comrade is waiting for you with a cheerful, “Hello Mike! How would you like your coffee today?” It doesn’t matter what you answer, though, because it will always serve you exactly what the research says is the optimum amount of caffeine for your body and health history (it, of course, has access to your health history too, just like the Smart Fridge 4000).

    You plop yourself down in front of your neurointerface (what we might’ve at one time called a “computer”) and check your email. You have 27 alerts since you last checked your email last evening. All 27 of them are related to health and behavioral activities you either didn’t do, forgot to do, didn’t do properly, or did right, but the smart device just thought you should have a record of doing it right.

    You delete them all, unread. Because that’s what humans do. They ignore things they don’t want to deal with, no matter how insistent, playful or “enchanted” they may be.

    * * *

    Human behavior is complex. Far more complex than I think most people realize, with many people falling back onto Pavlovian reward systems thinking that what worked for dogs, also must work for humans (with a few gentle, technologically-enhanced tweaks). Indeed, for some small minority of people, such systems may be shown to be effective. But for many others, such systems are a drop in the bucket.

    The price we pay from such devices seeking to alter our behavior is that they will inevitably come from disparate systems that don’t talk to each other. They will try and use techniques that work for some people, but not for others (putting us all into the same square hole, no matter what size or shape we are).

    “Enchanted” devices may indeed be a part of our future, but they must be deeply personalizable to fit into whatever lifestyle or needs of the individual.

    Can a mobile device become one of these things, as well as an object of comfort? Absolutely. In many cases, it already has. But right now, it’s an object of comfort with little coherence. We have dozens (or hundreds!) of apps on our devices that aren’t aware of one another, that don’t talk to one another. Just like in the real world, we have hundreds of companies designing software that don’t talk to one another, that don’t even know each other exist.

    Human beings generally need order (or at least coherence) for a picture to make sense. Devices and software — even from different manufacturers — must “know” one another, recognize one another, talk to one another, in order for humanity to ultimately benefit, and for any of this to start making sense.

    • Danny Sands says:

      Brilliant response, John! The lack of coherence in the multitude of technologies with which we interface has been concerning to me, as well. Putting together a clever little standalone app is one thing, but making the app co-exist in an ecosystem of interconnected apps is quite another. The first is perhaps necessary to spur innovation but the latter is essential for meaningful adoption.

    • David Rose says:

      Don’t jump so quickly to a dystopian future of buzzing and beeping. Designers understand the notion of peripheral versus focal interfaces, escalating prompts and personalization.

      Our morning routines are filled with a cacophony of prompts. Many are a helpful part of a busy daily routine. Most could use a redesign.

      We have two small children to awake, dress, feed, pack lunches, bundle up and trundle off the school. In parallel my wife and I shower, dress, primp (in her case). We all employ dozens of products to get us from bed to bathroom to kitchen and beyond.

      As more products become infused with electronics, how do design a pleasant ecosystem of products that serve and support, rather than overwhelm and annoy?

      Ten years ago I founded a company called Ambient Devices ( The big idea was to leverage our human capability to perceive subtle changes in our periphery. We focused on interactions that take place in microseconds without buttons, or internet browsers or phone apps. What we found is that people adore glance-able displays. They respond to the summarization, simplicity and effortlessness of always-on. We weren’t trying to be Pavlovian, but people do conserve energy (for example) when they see their own consumption in realtime.

      My critique of a couple of morning-routine interactions:

      I chose a Philips wake-up light to ease me into wakefulness over the course of 10-20 min as the light gets brighter and brighter. A beeping alarm is too jarring. If I don’t wake up after 20 minutes it starts to play bird sounds, which for a city dweller are surpassingly pleasant for some ancient part of my agrarian brain.

      When I walk into the kitchen to make coffee (no external prompt required here), I appreciate my Vitality nightlight that subtly pulses orange so I don’t forget my morning meds. If I do forget, which is now rare, it will play cute ringtones or text me providing a nice safety net. Coffee, condoms and toothbrushes come with their own drives.

      The toaster oven beeps to let us know the toast is done and hot. It would be much nicer if it escalated from a subtle sound or visual cue before making such a loud beep. But I prefer the prompting over the inevitable alternative: cold toast.

      Across the room the color of my Ambient Devices weather display shows me the approximate temp range for the day. Even without my glasses, in less than 1 second I know how to dress the kids. If I walk closer and spend 5 seconds, daily icons show the next 7 days forecast. I don’t need to find the laptop, open a browser, and type in my zipcode then get lost in email…which is truly distracting.

      Our microwave beeps when it’s done heating something, then beeps again a minute later if the door hasn’t been opened. It’s surprising how often this happens. If it weren’t for this prompt the kids might never get their 45 second egg-whites.

      A *perfect* ambient display is a kitchen window that shows us, in less than a second, if the streets are wet, the trees windblown, or clouds foreboding.

      Our visual and auditory system has plenty of extra bandwidth to read hundreds of cues from our environment. As designers we need to move beyond the screen to leverage more peripheral expressions of information that respect people’s attention–the scarcest resource of all.

  3. Susannah,

    Thanks for your post; it’s like a who’s-who of my favorite thinkers right now.

    At The National Campaign to Prevent Teen and Unplanned Pregnancy we have been doing some thinking about how to add delight to to text reminders for birth control in the context of our new birth control support network, Bedsider ( I hope that we have landed upon something that could be described as a “mobile comfort object.” These little reminders are fun and something you can look forward to every day–even share–and, by the way, they remind you to take your pill, change your patch, remove/insert your ring, or get your shot.

    People need to see birth control as something that’s easy and maybe even fun. Devices that provide feedback and rewards (the ROI of getting your birth control right) will be essential in providing the support that women and men need. I find a lot of personal inspiration in the people you cited who are paving the way.



  4. Another very resonant piece Susannah. Thanks

    The UK has pinned its hopes on outcome reporting as the future of equitable, efficient public health provision. A noble aspiration but until the “self-report fails” issue is addressed it will surely remain as a pipe dream.

    We have tried to keep our networks as ‘human’ as possible ( see ) and are currently building networked outcome reporting into our platforms. Patients sharing quantified outcomes online is still a difficult concept for many medics, but we believe by opening up the value of the information to the patients (not just clinicians) the quality and quantity of outcomes will be magnified.

    • Susannah Fox says:


      I have new survey data (US-only) showing that about 1 in 5 internet users go online to find people who are dealing with the same condition, so the video’s focus on “people like John” makes a lot of sense to me.

      I very much appreciate your UK perspective. Health 2.0 Paris was like an “up periscope” moment for me, looking in on the EU health care systems. Have you seen, for example, Morten Petersen’s keynote about how Denmark integrates technology with their health system?

      So while we rend our garments over here in the US about how an integrated system can never come about (oh, um, hi John :) I am going to keep polishing my periscope.

  5. Susannah, great post! At the risk of sounding like a luddite, I would like to go a tad upstream from where you are and ask why chronic disease is exploding. A part of the reason is of course the aging of the population. However, this does not account for the 40% prevalence of a chronic disease across our population. This also masks the obesity-diabetes epidemic. I am a great believer in prevention, yet I also understand our predictably irrational ways (yes, I have swallowed Dan Ariely’s arguments hook, line and sinker!) So, perhaps it is time for some libertarian paternalism (sorry for all this pop social science — this is the level that I am at with your field) to effect a systems change in the way we live. This may effectively translate into less need for this brave new shiny world, may mitigate the looming healthcare provider shortage and yes, perhaps even bend the costs curve.

    Otherwise love the idea of networks, though not sure the Christakis model expends to the looser electronic ones. Does it?

  6. Susannah,

    Thanks for the post of (paraphrasing Larry) a roundup of current favorite thinkers. I also recently saw Rose present the ‘enchanted object’ GlowCaps and think this approach merits some consideration. However, I don’t agree with his all-or-nothing tweet about other forms of reminders & reporting.

    The picture John Grohol painted about the future of these objects is as interesting as your post itself. To me, what he is really describing is the cat-and-mouse game of digitally-mediated behavioral interventions and ‘alert fatigue’. That topic deserves its own post/article/book. If you go back to the drug interaction alerts put into early clinical decision support systems (CDSS)/EHRs used in pharmacies, hospitals and clinics, you’ll find incidents of alert fatigue (i.e. when the frequency, number, or relevance of alerts crosses a threshold and a clinician begins selectively or completely ignoring them). Those systems were terrible (and in some cases are terrible) as the determination of alert inclusion into the CDSS was made from a legal perspective rather than a medical perspective. The situation created was that if there was even a theoretical mechanism of a drug interaction (regardless of clinical significance), the system would stop the process and prompt the pharmacist or physician to take action or bypass the alert.

    Once people realized the vast majority of these alerts weren’t meaningful (foreshadowing?), they started ignoring all of them…or creating workarounds. Similarly, we used to employ email alerts for visit & medication reminders, which are now transitioning to SMS/text reminders…as the novelty of the tech was reduced (and other factors came into play); the effectiveness of the reminder was reduced. While we are still around 90% of text messages being read, we only have a window of opportunity for the SMS reminder to work. The same thing will eventually hold true for enchanted objects as sort of a left shift with fatigue occurs shadowing the pattern of Rogers’ diffusion of innovations.

    Some of this can be further complicated by issues such as having carefully worded reminders, vetted by health communication & behavioral psychologists, stripped down to an impersonal, vanilla, and ultimately ineffective version in the pursuit of satisfying ‘institutional compliance’ (side note: please write “How Institutional Compliance is Destroying Medication Compliance in US SMS Research & Practice” as your next post).

    In a sense, I am not disagreeing with Grohol; however, I am suggesting we capitalize on the windows of opportunities that we do have with varying types of tech as we concomitantly try to humanize the process and work towards a holistic approach.


  7. Congratulations, Susannah, on raising an apparently controversial topic for intense discussion. Our experience at the Center for Connected Health might help clarify. We have been impressed by the power of reminders and conversely by the need for them. In several studies we’ve done, adherence to a behavior such as taking a medication or applying sunscreen deteriorates rapidly to about 20-30% of goal whereas folks who get a refreshing, interesting reminder adhere at about triple that rate.

    The key is “refreshing, interesting”. No doubt alert fatigue will result if alerts are not really ‘smart’ but predictable and boring. We have overcome this hurdle by both personalizing and slightly changing content of the messages. Both of these can be automated.

    As to the cacophony of stimuli alluded to by John Grohol above, if we can’t implement this vision any more thoughtfully than that we don’t deserve to succeed. We are counting on coordination of alerts, messages, signals, etc. to be tailored to individual’s personalities. This is possible with technology and although the current iterations with sites like Amazon and Netflix aren’t healthcare ready, they give us some hope that we can get there.

    Since I pondered the talk on emotional automation, I have noticed more and more the use of technology as a substitute for human interaction in various settings and seen examples of it not working well.

    I picked up a few items at the Home Depot yesterday and as I was making my way to the automated check out, a cashier sought me out because her line was empty. I said, “What do you know, a good old fashioned human being”. Her reply: “At least I won’t yell at you. Those automated machines yell at everyone”.

    The exchange struck me. This is a challenge we cannot ignore. We have to move healthcare more to the point where we are comfortable with using technologies like the automated check out at Home Depot. We won’t succeed if we perceive those technologies as yelling at us. We will succeed if they are caring, insightful, charming and witty (not to mention medically accurate). I’m confident we can get there.

    • My point is simple — there’s no such thing as a “refreshing, interesting” reminder if your systems aren’t talking to all the other systems interacting with the person. Imagine a dozen different companies who believe their reminders are “refreshing, interesting,” and yet they have no idea the person is receiving 11 other similar reminders from varying systems from 11 other companies!

      This is just another example of the disconnected healthcare system at work in the U.S. Dozens of different companies who all think they have “The One Solution” to the “problem,” none of which actually care about the individual in a meaningful way. And by “meaningful way,” I mean, treating an individual like a person with respect and dignity in digital systems.

      That all smart digital systems that interact with an individual must, by definition, recognize and respect all other smart digital systems that interact with that individual. The only way human beings will respect such “refreshing, interesting” reminders is for them to be treated an individual by these systems.

      When the systems don’t know the individual has already received a half dozen “smart reminders” from other systems on the very same health issue, the “dumb human” will do what dumb humans have been doing for centuries — ignore the “smart” reminders.

  8. Fascinating thread, particularly for those of us working to build patient networks that can help people cope with and manage chronic disease.

    Dr. Zilberberg rightly asks whether the Christakis and Fowler model extends to online communities. In our experience with Diabetic Connect and other condition-specific social networks, we believe the evidence is encouraging. Damon Centola’s work at MIT suggests much the same — that social reinforcement from multiple online buddies makes people more willing to adopt certain behaviors.

    To Dr. Kvedar’s point, we’re more likely to succeed on this front if the tools we use are “caring, insightful, charming and witty.” That’s a heavy lift for technology innovators, but not for social networkers. The adoption of new social features we recently implemented, such as virtual gifts and hugs, has far exceeded our expectations. It suggests that empathy and encouragement from an online buddy may be enchanting enough to prompt some positive behavior changes.

    In the absence of a new mobile device that provides the level of comfort of a pet rock or Tamagotchi, we’re looking now at how to extend that empathy and encouragement to mobile. It’s not a magic bullet, but as Kevin points out, perhaps it’s one more way to keep things human while minimizing alert fatigue and similar patterns of diffusion.

    • Susannah Fox says:

      Your phrase – “That’s a heavy lift for technology innovators, but not for social networkers” – resonates with me b/c it fits in with what I’ve observed in my reading and my travels.

      In my reading: the brilliant Pandas vs. Lobsters essay by Adam Rifkin ( inspired me to write this post (hmmm, also citing Joe Kvedar and BJ Fogg):

      In my travels: Who is wittier and more likely to motivate you than your own friends? This is why I love Jen McCabe’s social app, I asked for walking challenges in each city I visited this fall and got some wonderful suggestions – and I was motivated to complete the challenges so I could chat about the landmarks w/those friends.

      In my travels, part 2: I witnessed a panel of 3 smoking-cessation program leaders – only one of which truly “gets” social (Chris Cartter of MeYou Health).

      My notes for the first 2 presenters is full of words like “bizarre” and “let go!!!” (for example, one program was so Draconian in their comment moderation – no off-topic posts, not even about the weather – that it sparked a protest group on Facebook). Neither integrates with Facebook.

      By contrast, my notes for Chris’s presentation is full of substance, such as “They started by asking people how they define well-being and then designed the site to respond to what people want” and “We are fully integrated with Facebook of course (and then checks himself out of respect for fellow panelists who don’t get it).”

      Thanks for sharing your example – I’d love to hear more.

  9. Annie Stith, e-Patient says:

    Hey, Susannah!

    I haven’t finished tracking down links or firming up thoughts yet, but this jumped out at me from “fear.less” emagazine’s email to me today:

    Like an uncharted island, the right path doesn’t have a name yet, and can only be named, studied and entered into the social dialogue once you get there. People will be full of doubt, but someone’s gotta go exploring.

    Just seemed to fit, somehow. (;


    • Susannah Fox says:

      Thanks, Annie!

      The quote that is reverberating around my head this week is from Mark Zuckerberg, founder of Facebook, who walked onto the stage at the Web 2.0 Summit, looked at the fanciful background illustration of internet “territories” and simply said: “Your map’s wrong.”

      Here’s more of what Zuckerberg said:
      “I think that the biggest part of the map has got to be the uncharted territory. Right? One of the best things about the technology industry is that it’s not zero sum. This thing makes it seem like it’s zero sum. Right? In order to take territory you have to be taking territory from someone else. But I think one of the best things is, we’re building real value in the world, not just taking value from other companies.”

      Here’s the full post, by Scott Rosenberg

      In other words, your comment is exactly on point.

  10. Having had the honor of sitting next to Susannah on the panel about patient communities, I especially enjoyed how she took her perspective on the role of love to an analysis of technology today and, aided by John Grohol, technology in the future. What strikes me as missing in the ensuing discussion is the notion of systems thinking, which was raised a few times during the Connected Health Conference. No aspect of health occurs in a vacuum including increased rates of chronic disease. Understanding the multitude of factors that influence health is necessary.

    I’m on a health literacy kick these days. This is in part because my students and I look at health websites in group crits in class or in their assignments and there is an abundance of sites that really aren’t that helpful and many that are distracting or deceptive. Where health literacy comes into play is the increased need, for many, many reasons, for people to understand their bodies and understand how to navigate the medical system. With better health literacy skills people can increase their chances of locating and using good websites, mobile apps, or any new technologies, enchanting or not.

    I didn’t intend to respond to this fascinating post and discussion, since I’m supposed to be grading right now and John, Kevin, and others set the bar very high for commenting.

    • Susannah Fox says:

      I never want to be part of a blog that intimidates people. Yes, the bar was set high, but everyone is welcome (and thanks for adding your wisdom to the conversation instead of getting your own work done!)

      • I admit, I had more free time than usual today, given the gray New England day and my lack of motivation to do other work during a holiday week. The bar is not high, the environment has conspired to make my response more robust than usual… :)

        • Susannah Fox says:

          Aha! I was wondering what that was all about. I should look at the weather report before I post.

          John, you know I appreciate critique, esp. when it’s grounded in experience and leavened with humor. And I also know that your career and life mission are to connect people for better health. So where do you see signs of hope? Don’t leave us with the impression that you’re all gloom & doom b/c I know it’s not true!

        • Alert fatigue is a real phenomenon and we are already suffering from it. Trying to get our attention with more “engaging” devices is a short-term solution to a problem that’s only going to get worse before it gets better.

          Smarter devices and alerts may be a part of the answer. And so I already alluded to the answer — devices must be aware of the entire environment the patient is interacting within. They must be aware of all the other alerts the patient is getting, and they must react accordingly.

          You can see an example of a company trying to deal with this very recently. Facebook introduced their own enhanced private messaging service to try and act as the central organizer for all of life’s messages (including emails) to you. I suppose the thinking was, “If we can organize all this information for people, they’ll be more likely to use and depend on our site continuously.”

          I don’t think the answer is a single, central place to organize things needing our attention. Instead, I think the smarter answer is for each “thing” to be self-organizing and self-aware. This isn’t just about a bottle cap that knows you need a refill. This is about a bottle cap that knows you need a refill, is going to warn you about the interactions with the other meds it “sees” in your environment, and can recognize when you’re being overwhelmed with too much information from a simple bottle cap, and does something smart about it.

          People see solutions to everyday problems without taking into account the larger picture or looking at a person holistically. Is someone forgetting to take a med simply about the act of “forgetting,” or is it because they can’t stand the side effects of the med and so regularly “forget” to take it?

          So my last comment is the same as my first one — people are complex. Simple solutions may indeed work for simple situations, but it’s been my experience that these situations are usually few and far between.

    • Lisa, I couldn’t agree more with you about using systems thinking. Again, in turning to birth control for an example, we may be successful in imparting on people the knowledge to use birth control effectively, increase self efficacy, and foster conversation, but using the right birth control (or any med) may still be too expensive, rely on a hostile health care provider, or require patients to have discussions they are not (yet) prepared to have.

      BJ Fogg’s models encourage systems thinking and are very good at revealing the most effective buttons to push for the kind of change you seek.

      • Marya Zilberberg, MD, MPH says:

        Apropos this — an interesting article in the NYT about MDs requiring unnecessary pelvic exams prior to prescribing oral contraception, setting up a superfluous hurdle thus potentially discouraging this health behavior.

  11. Christine says:

    Thanks for an excellent article. As a non-expert I find that these ideas come in handy at the oddest times

    Two thoughts:
    There’s a difference between tech that connects with people — a deep human need — and punishment/reminder tech.

    As evinced from my recent attempts to get more wired in, tech breaks, malfunctions, needs rebooting, needs a tech guy. 25% of time would be spent in breakdown & relearn mode. The repair-malfunction dimension is a non-healthful community of call back, hold, troubleshooting, return.

    The nature of social media is that it creates half communities, genuine humans, who may connect only tepidly in genuine settings. What % of “humanness” would these devices offer?

  12. Christine says:

    Plus, the way those Japanese electronic toys gained popularity, as I recall, was not sui generis, but as status objects. The number of buzzes going off, as I recall, were prestige indicators and class markers. Two doctors’ daughters, as I recall, attracting the envious gaze of other six- year- olds whose families could not afford them. Since the two girls were neither nurturing nor kind, their “animals” died as soon as the envious gazes disappeared

  13. Annie Stith, e-Patient says:

    Hey, Susannah!

    Well. There are a lot of links in both your post and in all these lively comments. I attempted, at first, to follow the links (well, except the videos because my phone can’t play them). I gave up about halfway through the comments because… well… I have a life to live.

    I’ve been an e-patient for nearly 15 years now, but it’s only a few months ago that I started reading more e-patient and health care related blogs. It’s a difficult conversation to jump into. It’s not that the subjects are over my head or beyond my intelligence, but rather that a lot of discussion has already taken place. References back to previous conversations and points made in them leave me trying to infer from the context why the reference is being made or what the point being referenced is about.

    I’ve read enough, though – especially today in your post and these comments – to have a couple of thoughts of my own.

    Why? Why, other than there being a shortage of physicians and nurses, are robots, enchanted objects and networks being discussed with so much energy? I feel I must have missed references to some important, far-reaching, and large patient data collection projects in the recent past that have given developers, innovaters and people in the health care industry some clear direction about where it is we (patients and family caretakers) currently have needs not being met, or where it is we see technology assisting us in the future. I see very little said about patients at all, except what appear to be assumptions.

    Why? Why (if it so happened) have the ideas been honed down to robots, enchanted devices and networks? Were there other ideas and it was these three chosen for this post? Or were the conferences focused on these three options? Did the missing patient surveys indicate these would be the most widely accepted by patients?

    To sum it all up, where are the patient voices at these conferences, in these subjects and in these discussions? Because without some indication these objects will be accepted by patients to begin with, these points are moot.

    Maybe I’ve missed something? Maybe someone can point me to the studies or conversations or what-have-you that would help me understand?


    • Susannah Fox says:


      You bring up points that are near and dear to my heart.

      I was just talking last night with a friend of mine who said he’s been following my tweets but really doesn’t understand most of what I say because I use so much jargon and Twitter vernacular. Ouch. I should add that he’s an MD and a geek, not someone divorced from the intersection of health & technology. Double ouch.

      You seem to be saying something similar about this blog post. I wrote it with the assumption that people would have some background in the field, would know my research portfolio at the Pew Internet Project maybe, or would have heard about the research that backs up Joe’s work at Connected Health or David’s work at the MIT Media Lab. I provide links to those places and other resources in case someone is coming in midstream, but clearly that is not enough (and can be overwhelming).

      Let me say this: Joe, David, and I are all evidence geeks and patient groupies. One reason I feature their work is because it shows the power of user-centered design and listening to consumers.

      Both the Connected Health conference and the Mayo Clinic conference (where these videos were captured) did include patient representation, but most of the people on stage and in the audience were “professionals.” E-patient Dave has written about the need for more patient voices at health care conferences (as have I, and Ted Eytan, and others).

      But that’s not really what this post is about. I wrote this post as a postcard from Boston, Rochester, and DC (and let me tell you, I have quite a few more postcards to write – I went to a LOT of conferences this fall). I wanted more people than just me to benefit from my notes, my bad nights of sleep while traveling, and my sense of wonder at the possibilities for the future.

      Hopefully my posts can spark ideas for people, no matter their background. Hopefully my research can inspire people to take a look at what patients are actually doing online and make better (policy, business, personal) decisions because of it.

      Your comment is a wonderful reminder to avoid jargon and insider references. Thanks.

      • Annie Stith, e-Patient says:


        My comment was not, in any way, meant to tamp down on the fire you have that’s been evidenced in the posts I’ve read. Maybe my comments would have been more appropriately addressed to “everyone” rather than to you personally. It’s a habit that I address the post’s author.

        My frustration, in part, is feeling like such an outsider – not because of you, because you’ve greeted me quite warmly, but because of the “jargon and insider references.”

        Yet, if anyone is affected by where these discussions go, it’s me, isn’t it? Am I not what’s considered to be a “consumer” in these situations? Someone with chronic conditions who, for the next 20-30 years, will be affected by changes in health care and the tools used to deliver it, and for me to comply with my physician’s/team’s instructions. Someone for whom (to date) there is no cure, and not even a whole lot of treatment options, which is why I became an e-patient in the first place. My physician is only human, and I felt I just couldn’t expect him to keep up with the developing (and often “alternate”) treatments for my conditions as well as all his other patients.

        Until that settled into more of a routine, I had no time to discourse about the future of health care tech, though I’ve certainly kept up on health care reform. So, it’s a matter of timing that really caused me to miss what were cornerstone data gathering and discussions.

        Hmmm… The word “cornerstone” has knocked something loose. I’m learning elsewhere about blogging. It’s recommended by the “gurus” that “cornerstone” posts, with foundational information that anyone, beginner or advanced, could benefit from, are listed somewhere on the site as such for easy reference. Would it be possible, at least at Pew, for there to be a (hopefully short) list of the studies which have most impacted the directions that health care tech has gone/is going?

        Just a thought.


        • Susannah Fox says:

          That is a great idea!

          One “cornerstone” is the “e-patients white paper” (actually represented by a black icon) at the top right of this blog. It was written by Tom Ferguson, the founder of this blog, and I’d say it’s a must-read.

          It’s hard to think of a single paper that can represent the current field. Let me get back to you on that :) (suggestions welcome from other people!)

        • Yes, Annie & SFox, after Thanksgiving let’s put out a call for cornerstones.

          We can make them into a “start here” tab on this blog.

  14. CayDare says:

    There is no substitute for self-documentation in a number of health and living sets of circumstances; e.g., challenging disease control and medication taking, symptoms recording before or after medical assessment, and behaviors by another or others that may need to be noted and reported.

    The tech-oriented may find it easy enough to launch a _todo_ (“to do”) app or use some digital notetaking capability and take down every detail to be recorded. Many people don’t know how or aren’t equipped to do so. Mounting stress can make remembering events harder.

    I hope devices and applications do prove to be widely helpful (and that in the innovation, promotion, and hot-new-thing gaga the importance of security, privacy, and dignity will not be shortchanged). But more than wishing for apps, I find myself yearning for a relatively simple-to-operate recording device (*not* a smart phone) that would prompt the user (in the user’s voice, if desired), at programmed intervals, to document one or a few subjects (“code” names for subjects would not be difficult to adopt.) The unit could require a code for unlocking, and could be equipped with a trackable GPS chip; abuse and theft must be considered.

  15. […] The Future of Health: Robots, Enchanted Objects, and Networks a post by @SusannahFox on scaling healthcare. […]

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  17. I’m just rereading this, and BOY are you way ahead of most thinkers.

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