What’s the point of Health 2.0? (Some answers this time)

What’s the point of all this technology if it doesn’t motivate behavior change?

That’s what we debated almost a year ago and now I’d like to bring up the same question, but with a few more examples. If you have time, I highly recommend watching this video (and not just because I open with my personal health tips):

If you don’t have time for the whole panel, choose from the menu of Health 2.0 San Francisco talks and demos (but don’t miss Alex Drane‘s research and heartfelt plea… or Doug Solomon’s What Sex Sounds Like… and I can’t stop thinking about Ron Gutman‘s opening slide, Ramin Bastani’s STD results, Richard Tate’s ideas for getting kids to exercise…)

OK, just watch the vids, then come back and tell us what YOU are doing to move the needle on behavior change.


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40 Responses to “What’s the point of Health 2.0? (Some answers this time)”

  1. Christine says:

    Hey Susannah

    Excellent post as per usual :) I’m sending the link to folks at the USC student health center and the USC Hospital. Without a visual, it’s like describing water to people who don’t drink. The disconnects among the various communities still amaze me. I think I’m not connected since most of it is new to me, but lots of hc personnel aren’t aware, either. I would like to see Health 2.0 draw in more reps since much of it is youth oriented or more comprehensible to members of the younger generation. ahem….

  2. Christine says:

    make that include more university communities….

  3. First Aid kit Refills says:

    Good information as well as excellent way of presentation.

    video was awesome and very easy to understand.

  4. We’re doing a project with Temple University right now to study using text messaging and Facebook to assist in weight loss. The research is still on-going, so it’s too early to talk results. But it’s been amazing watching the engagement with text messaging and also learning about how to use Facebook for behavior change. You can reach me through morrillkevin (at) gmail.com if you want to know more.

    • Susannah Fox says:

      Thanks! Definitely ck out Chris Cartter and MeYou Health (he’s on the panel at the end of the video). Their “Daily Challenge” is my new favorite – simple, fun health activities delivered via email and connected with Facebook.

  5. Fascinating talk. I have to say what the innovators are doing is really interesting, especially addressing a difficult-to-discuss health topic (sexuality). Sexuality is ideal for tech tools such as those discussed in the video, because of the embarrassing nature of the topic.

    Is a health dashboard going to “move the needle” for many (most?) people? We’ve seen some adoption of them in the wild, but it’s really still too early to tell. I don’t think a dashboard, on its own, is sufficient for behavior change, though. It’s a necessary, but not sufficient, component of behavioral change.

    But I’m a little confused. How can a panel talk about “behavior change” without a single psychologist included in the discussion? It’s like trying to design a piece of software without talking to a programmer.

    Psychologists have been studying behavior change for 120 years. They may have a thing or two to contribute to the discussion. ;)

    • Agreed re psychologists, John – for me a mind-opening highlight of the fall conference season as meeting Stanford’s BJ Fogg, who’s been working on behavior change (particularly online methods) since last century. Susannah briefly introduced his work here in July; I hope to study & write more about it/him this winter.

      • Annie Stith, e-Patient says:

        Hey, Dave!

        Thank you, thank you, thank you!

        I now understand where BJ Fogg, who’s mentioned regularly here and elsewhere, fits in the picture.


    • Susannah Fox says:

      Agree!! Now that I think about it (too late) I should have suggested you or another psychologist as a discussant. Is it too cheeky to ask you to write what you would have said, if you were on that closing panel?

      • I’d say exactly what I’ve been saying here over the past few days (and what I’ve been saying more generally over the past decade) —

        • Humans are complex.
        • Change is difficult, even under ideal circumstances.
        • No one model is going to work for everyone.
        • Methods should adapt to meet the individual and personalized needs of the person.

        Something to keep in mind… If behavioral change were easy, 400,000 psychotherapists in the U.S. would be out of business tomorrow. Changing behavior — even when it’s life threatening, such as smoking — is extremely difficult. There are a set of complex interactions at work that differ from person to person.

        And with all due respect to BJ Fogg (whose model is just an enhancement and modification of long-standing psychological models for behavior change), his is one of dozens of theories in the literature on how to account for human behavioral change. He has zero (published, peer-reviewed) data points to support it at this time (at least that I could find).

      • Annie Stith, e-Patient says:

        Hey, Susannah!

        Hint: BJ Fogg’s website about his Fogg’s Behavior Model (FBM) = “Cornerstone Content”…

        Observation: If the oldest archives weren’t listed in the sidebar (but still available to link to in posts), there’d be some extra room for a short list of… oh, let’s say… something like “Cornerstone Content” ;-)


    • Christine says:

      One ironic ? feature of technology in dealing with sexuality is that it is private and impersonal. An area of hc where NO being human is an asset.

  6. Christine says:

    I agree with John, although more from the patient perspective. They were talking more about their audiences (What do women want?) than with them. The presentations were fascinating, the products useful and even life changing, but … As charismatic as these folks were, major motivation was profit and competition (who can best tap into profits from the diabetes market, for instance). Ouch! What do patients want? Copies of reports and test results so they can make timely, educated decisions . Nobody heard, or cared. Or, it would surprise me if these folks hurried home to address patient concerns unless, as Gilles semi-threatened, the patient communities somehow outstripped them in a profit area (decoding clinical trials). Brilliant people, but it wasn’t a patient-centered event more than thcb is a patient-oriented site

    • Christine says:

      Correction … sorry I’ve been going back and forth between my computer and my iPhone.

      Susannah’s panel on sexuality and forbidden topics was enlightening. The overall sense of the conference (not the panel) was the Mad Men/Peggy phenomenon. Patients were the objects, not the subjects, of the interaction. “Let’s call a patient in to see if it works.” The most clever apps I saw were those that arose from the creators’ personal needs/sense of humor: TweetWhatYouEat, Qpid.me. Diabetes community seems powerful, able to commandeer some of the dialogue.

  7. […] the full blog entry: What’s the point of Health 2.0? (Some answers this time) Dr. John Grohol is the CEO and founder of Psych Central. He has been writing about online behavior, […]

  8. Christine says:

    Ok, I’ve been thinking about the Health 2.0 SF Bay for a few weeks. Susannah’s was definitely the most amazing panel, and the presenters were truly innovative, but the overall impression was like a scene out of Mad Men, albeit more modern Ad guys calling in Peggy as a demo to see how she liked her Playtex bra. After thought. But this was health care, matters of life and death, not a bra or a cigarette or a new style of razor or car. There was some fundamental disconnect. I’m speaking as a patient advocate and anthropologist whose book is entitled “Enchanting Capital.” I favor the peasant over the king.

    • In health and mental health, you have the ability to be your own king, even while visiting someone else’s kingdom.

      • Christine says:

        However expensive the setting, their system of interdepartmental communication was broken. There was nothing we could do about it, nor was there anything a phone call from the Office of the President at USC to the CEO of USC Hospital could do about it. Fortunately, this situation was not too serious. We’ve done “serious” at other major hospitals, with the same issues and nearly lethal results. One issue was that I expected better since the insurance is good and this was their flagship enterprise.
        This was about compassion and defensive patient-ing. My daughter had not had anything to eat or drink since the previous afternoon — on their instructions. I drove down five hours to assist; got in at 1 AM awaiting a 9 AM scheduling call. She was postponed indefinitely: perhaps that afternoon, evening, as late as midnight, or perhaps the next day. If I was not the Cheval de Guerre, the outcome could have been far different. This is not about being king or queen of any system; it is a production of the USC Marshall School of Business/free enterprise model of health care. Their lower level staff were underpaid and unmotivated. We understand what there is to be grateful about, but it’s not dictated by their PR machine or by anyone who works within or defends these systems. I did, however, learn what “dirty surgeries” were (those pushed back to the end of the line because of concerns over infection and contamination). Undue optimism here reminds me of the line from Glee: “You probably think homeless people are just outdoorsy.”

  9. Christine says:

    So the problem is not that it is marketing and advertising (profit) oriented, the problem is when it professes to be designed for patients when it is not. This was the basic delusion/confusion of the enterprise. I don’t particularly care that a major university hospital fails at interdepRtmental communication and basic compassion (we had a new adventure at USC’s flagship hospital and surgical department last week sigh); I know how to beat our way through the system. The problem is when they advertise their excellence in care and compassion whentheir system is profit- and system and Big Donor oriented. The whole place was an architectural monument to DOHENY, marble atrium, etc, but there was a phone with an ext number and a panicked guard at out- patient surgery, listless clueless clerks at hospital check in. No patient in the system after my daughter (more than 24 hrs without food or drink) had spent the previous day filling out the paperwork. A passerby nurse? Clerk? Used MY iPhone to try and connect with the surgical department. Hey! What if she was a random stranger? (someone “forgot” to scan the documents) sigh Trash in the beautiful, empty post-
    surgery waiting room. And this was their flagship operation, not USC County, where they dump indigent patients in the street! We survived; the architecture overwhelmed the people; their computer systems were defeated by their personnel; the signs were for personnel (I got lost twice and locked out of pre-surgery once.) big gap between sip and cup. Now, what are the chances of an accurate bill or getting the lab results or surgical report sent electronically so patient, the next time she is asked, knows the name of the institution, date of admssion , name of the surgeon, correct diagnosis, etc? At least we had the surgeon and risk management people laughing with stories of Qpid.me, TweetWhatYouEat, and iTriage

  10. Christine says:

    Sorry. These comments are out of order. My iPhone link (I) didn’t distinguish between comments and sub-comments.
    a) we (my college student daughter and I) visited USC Hospital last week on an emergency basis;
    b) despite this being their flagship hospital, their admissions and interdepartmental communication systems were totally out of synch, starting with their computers/entry clerks and staff;
    c) so their whole system broke down,

    As Annie said, Why are people inventing these various software or computer apps? What is the purpose? As Susannah would ask: what is the interface of culture and technology?

    One feature of commodity fetishism is when machines are endowed with human attributes (“Volvo, the intelligent car”) and humans are given the attributes of machines: factory workers, doing repetitive labor.
    There is/was, as alluded to in the above discussion, serious displacement of IT and resources. Despite the big name and the big money: there were no apparent innovative uses of technology; break down of existing technology due to poor interface of “the system” and the staff; technology dominant (a phone and a sign saying to call an extension to check in – leave a message) when humans should have guided the interaction. This is an expression of value.
    Funds obviously went into the architecture, which was constructed like a museum, with the Doheny name plastered everywhere but no people or signs directing patients in a coherent way. Half of the space, while beautiful, was empty, misused or mis-labeled, indecipherable except to staff.

    The place was like a medieval kingdom. African Americans and Latinos in menial or lower level positions, fatigued, dispirited or half trained as they went about their work (the guard handing out pagers, but calling a supervisor to to confirm how they worked); nurses half mad (you could hear them complaining about scheduling, holidays, pay, etc.); self confident residents and surgeons (Asian and Anglo) at the top; magic scheduler at the very top, invisible, along with billing and insurance.

    It’s as if someone built an expensive freeway system as a monument to a big donor but forgot the road signs. For two hours, as we went back and forth between buildings, we wondered if we were on the Wrong Planet. We were new to this facility, but neither of us was inexperienced with the medical system.

    Where does HIT fit in this picture? I’m not sure. Like I said, the personnel in admissions were using MY phone to figure out what was going on. Clerks at Macy’s are more friendly than the front-desk and admissions personnel.
    The only way to help patient navigate through the system was through a parallel system of political contacts (applying pressure by way of the USC President’s Office), by prying out records and reports to see what actually had gone on, and cozying up to the surgeon so we could get treatment, cut through the paperwork, and get home.

    I asked the clerk at admission to provide necessary documents for release of records and reports via aHIPPA release. The clerk didn’t know what we were talking about. Two days later, when I was directed by phone menu to Patient Records, the administrator said they had no way to release records unless the patient signed documents, sent them back to the hospital, etc. etc. etc. How many man-hours went into a simple operation that could have been handled on the spot or via email attachment? As for my daughter, a young adult, she was so stressed and tired from the whole thing she almost refuses to sign a new set of documents because she (correctly) intuits that it may be a new waste of time. All she was left with was a pile of paperwork that insures payment, absolves them of all legal responsibility and states Patients’ Rights without compliance.

    The system which DOES work is UCSF’s Mt. Zion Hospital, but then SF is a different, more innovative hc culture than LA. (Home of Health 2.0 :). Team effort + compassion — all the way from admissions to surgery, to records, nursing, janitorial services, etc. UCSF created an instant patient feedback system, so they are able to correct mid-course during the patient experience. The Tell Us How We’re Doing form comes at every stop, with every meal. On a piece of paper. This is not technology. It is a different cultural system, driven by different values.

    Ms. Political-Economy, wading through piles of medical paperwork, shredding, trying to clear out the mess of the last 10 years before the holidays.

  11. […] the full blog entry: What’s the point of Health 2.0? (Some answers this time) […]

  12. Mark Boguski says:

    I finally got around to viewing the presentations and panel discussion and reading the comments. I agree with John Grohol about the unfortunate lack of professional psychology expertise. I would further cite the lack of a professional, biomedical research perspective; most of the panelists seem to come from a marketing and communications background.

    Regarding professional research, the NIH alone spends $30 billion a year on biomedical research. Most of this is “basic” research although there has been a trend in recent years towards more translational studies. $30 billion dwarfs the resources that any of the panelists could bring to bear on the important problems discussed and I’d like to see the empowered patient & participatory medicine communities lobby for the DHHS to direct some of its considerable R&D funds toward Health 2.0, mHealth, etc. You don’t have to be an academic to participate. NIH sets aside a small but significant fraction of its annual budget to support small business development (Small Business Innovation Research or SBIR program). The beauty of SBIR is that the funds are grants without any of the strings attached to money from VC or angel resources, for example.

    Turning to some specifics, Ron Gutman made several points in describing the “virtuous cycle” represented by his multicolored feedback loop. The first two (blue and orange) segments represent exactly what we’re doing with Resounding Health, i.e. giving people a convenient place to collect, organize, personalize and share the results of their online and offline research in our “casebooks” (or health journal in Ron’s characterization). If Ron had recorded and bookmarked his headache/brain tumor observations in one of these, our algorithms and ontologies would have automatically organized and linked his work to all medical knowledge in the approximately 2000 other casebooks on our site which represent both a comprehensive knowledge base of government health information as well as crowd-sourced information from other users. This would have provided a fully-annotated report for his wife or other professional healthcare provider.

    Ron also made the point of the importance of a journal for recording health behaviors and their effects over time. This is one of the key ideas behind our dietary and weight management smartphone platform, http://www.PhotoCalorie.com. If journaling is not easy and powerful, then people will do it for a while and then give up.

    On the topic of obesity, Richard Tate’s Zamzee application has only half the answer: you can move all you want but if you’re still consuming large quantities of high-carbohydrate foods, the calorie-burning represented by movement will only make you hungrier – a vicious cycle. The outcomes (increased activity) Tate is measuring are inadequate; what really counts is a decrease in childhood obesity and/or type II diabetes from a randomized controlled clinical trial.

    Regarding calorie counting, we’ve found there to be a lot of false precision in the calorie-counting approach to weight management. We need to change the paradigm from obsession over the precise enumeration of calories to the longer-term alteration of dietary constituents and eating patterns. See some relevant background information at these links: http://www.medpagetoday.com/Blogs/22580 and http://www.medpagetoday.com/Blogs/22662.

    Getting back to Dr. Grohol’s point, Alexandra Dane is the only panelist that referred to formal psychology as a basis for her work, i.e. Abraham Maslow’s 1943 Theory of Human Motivation. Surely there’s been additional relevant research published in the 70 years since then but the other panelists said nothing about the theoretical or applied psychology behind their work.

    Our work on health communication at the intersection of social media and popular culture, http://www.CelebrityDiagnosis.com, is firmly rooted in the peer-reviewed literature on the applied psychology of “teachable moments” (addressing Chris Carter’s points about engagement and social influence) and well-known theoretical models of health behavior change. Furthermore, our approach was modeled on Kinzie’s 5-step framework for the development of instructional materials. I provide some references below.

    In summary, the main thing I derived from reviewing the video and reading the comments is that we should write up our work for the Journal of Participatory Medicine. So thanks Susannah for providing this motivation!

    Background Reading

    Smith, K. C., Twum, D. & Gielen, A. C. Media coverage of celebrity DUIs: teachable moments or problematic social modeling? Alcohol Alcohol 44, 256-260 (2009)

    Metcalfe, D., Price, C. & Powell, J. Media coverage and public reaction to a celebrity cancer diagnosis. J Public Health (Oxford) (2010)

    Havighurst, R. J. Human Development and Education. (Longmans, Green and Co., 1953)

    Lawson, P. J. & Flocke, S. A. Teachable moments for health behavior change: a concept analysis. Patient Educ Couns 76, 25-30 (2009)

    McBride, C. M., Emmons, K. M. & Lipkus, I. M. Understanding the potential of teachable moments: the case of smoking cessation. Health Educ Res 18, 156-170 (2003)

    Hochbaum, G. M. (ed U.S. Public Health Servie) (Government Printing Office, Washington, D.C., 1958)

    Bandura, A. Social foundations of thought and action. (Prentic Hall, 1986)

    Kinzie, M. B. Instructional design strategies for health behavior change. Patient Educ Couns 56, 3-15 (2005)

    • Matthew Holt says:

      Mark. Seeing as I’m one of the people responsible for organizing this panel I can take some blame for the lack of professional psychologists on the panel. But here’s the point. 70 years of psychology, and we’ve done little or nothing to either change the conversation, or to change health behaviors.

      The people who have done something to change behaviors in America (and elsewhere) haven’t done it with NIH grants (although I agree that many more should be directed in Health 2.0 type directions), and haven’t done it via the medical profession. They’ve done it with technology and marketing.

      So I can’t claim that the panel was perfect, or comprehensive (although it was pretty damn good!). But I do assert that some combination of technology and marketing is the solution…and yes, psychology properly applied is a big part of it. But not all of it…

      • Mark Boguski says:

        Matt — You and I are probably more closely-aligned in our solutions than you think. Having spent many years in government, academia and the commercial sector (see http://www.markboguski.net), I have seen and experienced the advantages & limitations, successes & failures of all three. Although I’m part of the “medical profession” (MD/PhD), I’m also an idea-driven entrepreneur and try to combine the best of all approaches in my work.

        CelebrityDiagnosis.com is a case in point. It’s based on well-established psychosocial theory & concepts but uses Web 2.0 and social media technologies along with peoples’ fascination with celebrity to entice and engage them to increase their health awareness and medical knowledge.

        After four attempts, we have yet to convince the NIH to fund a study to assess the effectiveness of this approach and I’m skeptical that the NIH system can support innovation outside their traditional paradigm. At the end of the day, we’ll either achieve “market validation” or we won’t.

        We’ve already achieved some notable success in having our work syndicated to health care professionals on MedPageToday.com (call volumes to doctors’ offices go way up when a celebrity is sick an it behooves docs to know about what’s motivating their patient’s queries). Also, remind me some time to tell you why ‘lupus’ was the fifth most popular search term identified by Hitwise in May/June of 2010 (Hint: you can find the answer in a recent story on MedPageToday.).

        NIH also rejected our SBIR application to further develop and test PhotoCalorie.com (To be fair, they do provide partial support for ResoundingHealth.com).

        The NIH spends $3.5 billion a year on behavioral & social science research (see http://report.nih.gov/rcdc/categories/) and I think it’s fair to ask, as you do, how this enormous, multi-year investment has paid off in terms of a healthier society.

      • But here’s the point. 70 years of psychology, and we’ve done little or nothing to either change the conversation, or to change health behaviors.

        The people who have done something to change behaviors in America (and elsewhere) haven’t done it with NIH grants (although I agree that many more should be directed in Health 2.0 type directions), and haven’t done it via the medical profession. They’ve done it with technology and marketing.

        This is just a ridiculous claim. Psychological research has done nothing in the past 7 decades to help change health behaviors?

        And only the savior of technology and marketing can get us to the promised land?

        Seriously… Don’t denigrate an entire profession in one breath and then suggest, without irony, Madison Avenue and Microsoft can save us. It’s just beyond ridiculousness.

        Can technology help? Sure, it’s been helping for decades, going all the way back to cybertherapy being used to help treat people with specific phobias (for over 15 years now, btw). You can go back further to the support groups on CompuServe, Prodigy and Usenet to see real people helping other real people through the conduit of technology.

        Using technology to help motivate behavior change is neither new nor interesting. The dirty secret most of these technologists fail to share is that few people actually use these tools beyond the first week.

        Psychology has a whole host of ways to help technologists overcome these hurdles. Sadly, when they aren’t even thought of as being a part of the conversation, these companies will continue to shine for their 15 minutes, and then go the way of most Health 2.0 companies — oblivion.

  13. Susannah,

    Hey – it all depends on your definition. Limited Health 2.0 to “tools and technology” is very myopic in my opinion particularly when these inanimate objects can never get at the root of human behavior change that is required to move to “next generation care”.

    So lets get real – and attach the heart of behavior change with care delivery, health finance, and personal incentives:


    Accountability and personal responsibility aren’t flashy, but they are what is required to achieve the behavior change you seek.

    • Susannah Fox says:

      (This is a copy of a comment I just left on Scott’s response post)

      Hi Scott,

      I love your definition of Health 2.0 as a movement, not just a set of tools, and would only defend “my” redux definition by pointing out that it’s not really mine – it was DarthMed’s (an erstwhile commenter on e-patients.net who has since disappeared).

      I think that original “What’s the point” post back in January touched a nerve because it voiced what many people think/fear other people think about our little corner of the health care space: it’s about technology, not people. My research provides evidence that Health 2.0 (or another term: participatory medicine) is very much about people – they just happen to often use technology to connect with each other or to their own data in new ways.

      Here’s a speech that sums up what I’ve found over the last 10 years of research:

      The Power of Mobile

      Here’s a key point:

      What will happen when the untapped knowledge of every patient, of every caregiver, of everyone who has something of value to share actually has the opportunity to share it?

      That’s the next frontier. It is no longer about access. It’s about uploads. It’s about inputs. It’s about learning from each other.

      Thanks again for the comment. I was afraid that by posting during a holiday week we wouldn’t get any attention. How wrong I was!

      • Annie Stith, e-Patient says:

        Hey, Susannah!

        I read the transcript of your speech, “The Power of Mobile” (though I haven’t followed the links yet –battery issues).

        I just had to tell you that I felt it was motivating, clear in making your points, and helpful (at least for me) to better understand just what and who “mobile” refers to in Health 2.0. (I also like your use of alliteration.)

        Next up: Informatics for Consumer Health, 2009 symposium (after battery charges).

        I know there’s extra cost in transcripts. Has any of your research indicated how few mobile phones can play video? Has there been a cost/benefit analysis, or an indication of how many more patients would become engaged? (JK) ;)


  14. Christine says:

    Wow! If “technology and tools” and market forces are going to change behavior (outcome?), the winner of the Don’t Let the Hospital Kill You competition will be the software developer who transforms the iPhone into a hand-held gaming and weapons device. Hurl your way past admissions. Who are you? Nobody called us. Paperwork? There’s no paperwork. There’s nothing in the computer. We can’t find your records. No, my colleague is a genius. We have never heard of second expert opinions.
    Zap! instant records.
    Pow! accurate bill.

  15. Annie Stith, e-Patient says:

    Hey, Susannah!

    Wow, this is some discussion. You’re hitting some nerves lately. (You GO, girl!)

    However, I have to once again guess what most of the comments mean because I can’t watch video on my phone.

    [Aside: Is there an upcoming conference where you have the name of the organizer/sponsor? I’d like to suggest they also provide transcripts for those of us who can’t watch videos (plus, differet people learn differently — I do much better with the written word). I want to try to change some habits.]

    Getting patients to engage in order to change behavior is a tough one. I believe the encouragement for many is going to have to come from a trusted physician. (I can’t tell you how many times I’ve picked up a brochure in the waiting room to take in with me and ask one of my doctors about.) I’m kinda turned off by the idea of a direct sales pitch unless it’s to solve a specific issue the patient has, such as medication compliance.

    The Internet is crucial, too. If a website is set up with the appropriate keywords and Search Egine Optimization (SEO), it might show up more often on Google or Yahoo, but there’s no guarantee. I think paid ads will have a better chance with patients, IF they’re aware they’re not complying and IF they care enough about their health to change their behavior. Ease of use and/or fitting the personality of a subgroup of patients might work, too. It seems phones don’t get much attention, but one of te first proograms I bought was an alternative to my calendar to remind me of when it’s time for meds. The calendar screamed at me, where the alternatIve remider uses peaceful, Zen-like sounds.

    I’m sure there was no formal survey taken, but my Pastor told me it takes four weeks for someone to get comfortable with new behavior, and eight to begin to lose interest. (He was explaining why he changed the order of service every six weeks. He made sure we never got bored. But I also know I haven’t stopped hearing my alarms even though I’ve had it about a year now. I think that’s also because I care about my health.

    How to get people to care? I’m clueless. I’ve heard nearly incentive to quit smoking EXCEPT that it’s immediately threatening my life. I’ve tried to quit countless times, but it actually triggers my BPD mood swings when I go through the process. So, thay’s an example of how difficult it is defeating motivation. My BMFF’s mother was just diagnosed with diabetes, most likely connected to her obesity. Will she give up her junk food between meals and exercise? Probably not. Am I dieting in order to avoid the same diagnosis? You bet. How are we different? Our habits and our willingness to change. Each patient is the only person who can affect their own.

    That’s my two cents.


    • Susannah Fox says:

      Hi Annie,

      As always, I appreciate your 2 cents!

      Regarding transcripts: I have one example of a fully-accessible conference.

      Informatics for Consumer Health, 2009 symposium (event site):

      One of the speakers was Larry Goldberg of WGBH, who (I think) provided the simultaneous captioning that accompanied the live streaming version and is now archived with the video online. Unfortunately you do need to launch the .WAV file in order to see the captions. Larry emailed me a full transcript of the event, at my request, because I had to leave early and missed a few of the panels. I never did anything with those transcripts, but I can say it was wonderful to have them – I could skim, pick out key points, and do follow-up research on the speakers who intrigued me.

      So: it is possible, but quite expensive, and imperfect (typos, etc).

      You once again have brought up why I feel a sense of responsibility about taking notes at conferences and posting them publicly: I am privileged to attend so many interesting meetings and the information I gather should not just stay with me. As with anything, though, I recommend reading multiple accounts and (if you can) watch the videos which so many conference organizers are posting online.

  16. Christine says:

    Late to catch up to this fascinating discussion — revisit the basics. In terms of goals, there is a fundamental distinction between tech uses which support individual change (et., diabetes, etc) and those which change institutions. I think the iPhone app changes are fun and wonderful, but I can figure out how to diet or increase exercise on my own. My goal is always institutional change — how to protect one’s self or one’s loved one against medical institutional damage and ineptitude and communication breakdown that is endemic to most
    Someone should develop an app for that. Who do you call? Ghostbusters! Or, director of hospital admissions, or Risk Management, or the Ombudsmen, or he hospital accreditation org, etc. the question with a major illness or uncertain dx is Who’s in charge? Or, better yet, Who’s on the Hook Legally? For any given screw up.) that person would make a mint. Like iTriage, only a “mistake tree” not a diagnostic tree.

  17. […] What’s the point of Health 2.0? for a video and article coming from this conference.  A final quote from the video: “Use […]

  18. […] because it was a room full of public health advocates who are very comfortable talking about “unmentionables.” (How many speakers have you seen ask an audience, “We’ve all had sex in a […]

  19. […] because it was a room full of public health advocates who are very comfortable talking about “unmentionables.” (How many speakers have you seen ask an audience, “We’ve all had sex in a […]

  20. […] because it was a room full of public health advocates who are very comfortable talking about “unmentionables.” (How many speakers have you seen ask an audience, “We’ve all had sex in a […]

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