What’s the point of Health 2.0?–Susannah Fox

…The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

Someone going by the name Darthmed posted that comment yesterday and it stopped me in my tracks.

It is my job (literally) to measure the impact of the internet on society and contribute data to the public conversation. I analyze survey data, write reports, answer reporter’s questions, and speak at conferences where people either know too much about what I study or know so little that I come off as some kind of oracle from the Interwebs.

In this case, I was definitely not writing about health IT, nor the latest Health 2.0 trendlet, but the basic, nearly-universal-among-internet-users habit of Googling for health information. Search is becoming a wallpaper technology, something we don’t even see anymore, yet it’s clearly an activity worth discussion.

However, Darthmed is telling the hard truth about health issues facing the U.S. It’s his voice I heard in my head as I listened to speakers at a recent National Institutes of Health workshop, “Preventing Stroke and Heart Disease: Connecting Traditional and Emerging Approaches to Change Behavior.” Speaker after speaker talked about how nothing really works in trying to get people to change their diets for the better, to get more exercise, to save their own lives and the lives of their children. It was a parade of one step forward, two steps back interventions: media campaigns, individual counseling, community outreach. None worked long-term.

As I sank lower and lower in my seat, the lizard brain voice started in: “What good is any of your data in the face of this crisis? People can’t sustain behavior change after being told directly that they are killing themselves. And now you’re going to get up there and talk about Flickr, YouTube, and blogs? What is the point?

Luckily, the NIH workshop happened to fall on the same day as the FDA’s hearings on the internet and social media. My Twitterfeed was alive with coverage of the hearing, including some passionate opinions about how the internet can transform health care.

Another piece of luck is that for every Darth, there is an Obi-Wan Kenobi. For me, that’s Esther Dyson. She gives me the confidence to say nope, I don’t have a crystal ball, but I can help people understand the present in order “to get a sense for how the future will pan out.” I believe that, although very few people engage with their health on a daily or even weekly basis, it is important to understand what they do when their attention is focused on a health question.

I also believe that we don’t yet know enough about how to capture people’s attention, how to inspire them to say, “You know what? I’m going to skip that fast-food meal and make something healthy for dinner.” Maybe it could be something on Flickr, YouTube, or a blog. Maybe it’s something they find in a search result. Maybe it’s being connected, being part of a network of people who are influencing each other without being conscious of it.

So, welcome Darthmed — please keep posting your killer observations. But don’t mind me if I keep tracking how the landscape is shifting under our feet.

133 thoughts on “What’s the point of Health 2.0?–Susannah Fox

  1. This is downright scary to me. Like, EVERYTHING is at stake – if people won’t get participatory, what hope is there?

    But then there’s what’s happening inside me personally. Last fall at the PHAT conference at the Harvard School of Public Health, Esther Dyson asked “How many of you measure something about yourself every day?” (weight, bp, whatever). A few hands went up. “How many write it down?” Most went down – including mine.

    Last summer, having a headful of thinking about participatory medicine, I became a bike rider for the first time in my adult life. Why? Because it was the first time in my adult life I realized it was a valuable use of my time.

    In November at my annual physical I even asked my doctor why he wasn’t harder on me about weight and diet. We had a pretty extraordinary brief exchange, in which he realized he’s only “hard” with patients who complain about their condition – which I don’t.

    So then he sat me back down, re-opened our visit notes, and started typing: “6: Obesity. …”

    And I went home and started writing it down. And now, two months later, I’m still tracking my weight, and making those choices to eat something better. Tonight at a TGI Friday’s we got a special that includes dessert, and I didn’t want the brownie or cheesecake etc, so asked if they didn’t have an apple or something. The waitress snickered and said they do have a fresh fruit dish (no sugar) but she’d have to get it from the children’s menu.

    My weight’s been dropping slowly and steadily. I’m not utterly transformed – haven’t exercised much outside bike season, though I do walk everywhere I can – but I’m different than I’ve ever been.

    What’s possible? I don’t know. One person doesn’t make a trend, but one person can prove what is and isn’t possible. Go Darth, go Obi-Wan. GREAT discussion.

    • I love your blog and consider myself an e-patient. I’d like you to consider the other side: some informed, paticipatory patients LIKE it when they score a doctor who doesn’t give them a weight and diet lecture. Why? Because they’re not ignorant or lazy (wilfully or not), and they’ve heard it dozens if not hundreds of times before over their whole life. I know I’m fat. I eat pretty well actually, thanks, especially since I have Celiac disease and that rules out 99% of junk and processed food even if I wanted to eat it. I get good exercise when I can, as I have multiple chronic conditions, none of which are actually obesity-correlated. I like it when I see a new doctor, and they ask, in a general manner, how my diet and exercise are, and they believe me, and leave it at that.

      Unfortunately many doctors harp on weight as a health marker to the exclusion of everything else, refuse to believe that a fat person could possibly be educated about nutrition and exercise, and treat them poorly because of it. Many believe that if a fat person does not lose weight they are “non-compliant” and that they just need to do some more “tough love”. The doctor’s office is not an episode of The Biggest Loser.

      I guess what I’d really like is for doctors to realise that fat people have probably been subjected to near-incessant questioning of their weight and lifestyle habits, from everyone. And then exercise a little intelligence and work out whether their fat patient actually wants lifestyle advice or not, and learn to trust people when they answer what kind of diet habits and exercise they get up to. I can tell when a doctor doesn’t believe me and frankly it sours the whole professional relationship. And also frankly, I don’t really care if every single other patient of the doctor, fat or not, lies about their diet and exercise: I exepect respect. I’m not going to respect a doctor if I know they think I’m a liar. What kind of medical treatment would I be receiving from someone who thinks I’m a liar? Sub-standard, that’s what kind.

      There are plenty of interesting, maddening, and saddening stories related to this at First, Do No Harm.

      I’d also really like it if public health authorities would, for just a minute, give some thought to what all this instruction to follow healthy lifestyle guidelines means to people with disabilities, one aspect of which is discussed here: http://disabledfeminists.com/2010/01/18/the-new-york-times-tells-you-how-to-eat/

  2. This is a fantastic conversation. I’ve been thinking about this a lot lately. I’m a 3x time cancer survivor and have always been very involved with my health care team. Like E-patient Dave, I monitor many different aspects of my health. I know we’re the exception to the rule. I’ve been a little discouraged lately that health 2.0 and all these wonderful gadgets only work to provide solutions to problems, in most ways they don’t work to prevent problems.

    The next revolution in health needs to go beyond exercise and diet – it needs to address fundamental issues with our food supply, environmental hazards and wastes, and the overall neglect that we’ve allowed to creep into our everyday lives. Can this be achieved? Absolutely, but we’re going to need more people on board to turn this ship around.

    Thanks for starting this conversation!

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  4. Behavior change can take time, but I’m optimistic about the potential.

    About 40 years ago Congress mandated the inclusion of seat belts in passenger cars. Today over 75% of Americans buckle up and other countries have 95% compliance (e.g., Canada, Australia, northern Europe.

    Let’s be patient and realistic.

      • This is why my pitch to the participatory medicine movement is to get started in pregnancy – the best time I can think of to teach a bunch of healthy folks who are motivated to choose healthier behaviors and who will go on to make healthcare decisions on behalf of their kids and possibly other family members *how* to be engaged patients. True, not everyone will be pregnant before getting a serious illness (and of course this strategy would be of no help to men) but it might go a long way to helping establish a culture of participation in health care, teaching people how to use the tools and be effective participants, creating an expectation of participatory healthcare in the future, and perhaps improving health behaviors (Pregnancy is a major trigger for developing obesity, a fact that I’m sure is not a surprise to most, but only recently has anyone begun studying strategies to prevent obesity in the postpartum period.)

        • You would also be very interested in the Text4Baby program launching this month. Should be a great way to illustrate the power and ease of engagement using text messaging to bolster healthy pregnancy.

        • Thanks Dave – One of these days I’ll happily write up a manuscript for JoPM. Promise! I’m full of ideas as you know.

          Scott, I just saw the Text4Baby messages the other day (Lamaze International signed the MOU and I work for them). I look forward to the evidence of their effectiveness and am hopeful that they will indeed benefit moms and babies. I maintain that the energy/investment might have been better used scaling up CenteringPregnancy group prenatal care or providing doula care for all women (see my comment lower down in this sea). But I’m all for text messages, too.

        • Amy,
          I agree with Dave on the maternity article. It’s a very illustrative example of empowerment. As I said in a comment to Susannah’s article “Health Sites: Some Are More Equal Than Others” —

          E-patients are not only born out of disease/diagnosis — just ask any new mother.

          Colleen

    • Here is an equivalent low-tech solution:

      Everyone needs to provide evidence of an annual health check-up (with predetermined checklist) in order to (a) claim welfare, or (b) receive their tax refund. Yes, there will be some fraud, and there will need to be more free health clinics, but in the end I guarantee a LOT more people will be screened for diabetes, myeloproliferative disoreders, liver failure, hypercholesterolemia, thyroid problems, prostate cancer, kidney cancer, kidney failure much, much earlier.

    • Actually I liked the outcome of our discussion yesterday with e-Patient Dave…

      Pass legislation that requires healthcare providers to provide you with a written health summary within 24 hours, and within 7 days the results of tests that they’ve ordered and scripts that they’ve written in the prior 12 months. No need to have copious medical notes (or the derogatory statement that all doctors are scared might come to light) or even years worth of test results. Simple, but realistic and easily defendable.

      Then you can take the EHR health stimulus $$ off the table, since everyone will be scrambling to get some kind of systems (almost certainly electronic) in place in order to comply… Save lives and money at the same time.

    • One challenge of course, though, is the data to back up the need for legislation.

      “For a passenger who is traveling in the backseat at the time of their car accident, wearing a seat belt is 44% more effective at preventing death than riding unrestrained. For those riding in the rear of vans and sport-utility vehicles (SUVs) during a car crash, rear seat belts are 73% better at preventing fatalities. Keep in mind that victims are not properly restrained in more than one-half of all fatal car accidents.” (see: http://www.edgarsnyder.com/news/seatbelts/seat-belts-statistics.html)

      Can we really say that giving patients the right to demand their health summary / test results will really reduce morbidity / mortality by that much? I’m not really sure that we can…

  5. Darthmed’s comment makes me think about how important it is for us to make it easier for people to make good decisions (or more difficult to make bad ones). For instance, I’ve always been conscious about the environment, but I didn’t start actively recycling until I moved to a place with a curbside recycling program. I hate to admit it, but I still don’t always recycle if there are no recycling bins readily accessible.

    As we continue to explore ways we can use technology to improve health care, we should also look at more hands-on ways to affect change. What could be the equivalent of a curbside recycling program for wellness?

  6. Indeed Susannah Darthmed reflects the likely limits of the upside that can expected from ‘market based’ consumer directed health plans, their associated financial incentives (i.e., cost shifting), supplemented by an empowered consumer enabled via a myriad of innovative health 2.0 technologies.

    The American Public Health Association was/is a strong advocate of comprehensive (v. boutique) health reform supported by a robust public option. See their policy statement here: http://www.apha.org/NR/rdonlyres/12B43559-CC3C-45B4-845D-4EA574BA7CAB/0/chppdlet_apha_health_reform_modified050509.pdf; and advocacy tool kit here: http://www.apha.org/NR/rdonlyres/94F2DF82-8253-463F-A36A-7CD4B92B9093/0/HealthReformAdvocacyToolkit.pdf.

    Unfortunately APHA’s message (and those of AMA, ACP and many other professional medical or allied health care associations) were buried in a chorus of false and misleading claims about the nature of both house and senate health reform proposals.

    • Thanks, Gregg! I’m not going to comment on the pros or cons of any statement or legislation, but I will point you to an excellent column by Mark Blumenthal, AKA @MysteryPollster at the National Journal:

      What People Believe About Health Care Reform
      http://www.nationaljournal.com/njonline/mp_20100201_2350.php

      Excerpt:

      Most recent national surveys show at least plurality opposition to health care reform legislation, yet the January tracking survey by the nonpartisan Kaiser Family Foundation finds as many as half of Americans “unfamiliar with key elements of the major bills passed by the House and Senate.” Moreover, when the Kaiser poll informed respondents of “key elements” of the legislation, “majorities reported feeling more favorable.”

  7. This topic is very interesting to me. When I first discovered the Participatory Medicine movement, I felt simultaneously like I had found a home and that my world had opened up. I found such a deep connection with a few of the movement’s thinkers on the idea that engaged consumers can have a remarkable impact on their own health and on our entire system of care. I’ve also analyzed and written about trends in internet use in pregnant women and devised concepts for online tools. So the geek in me was really excited to find all the people outside of maternity care doing the same thing but analyzing and innovating beyond what I had ever envisioned.

    But I also think that some of the “innovating” is just about devising cool gadgets and apps. And a lot of the innovating is about finding new ways to measure data about our conditions, the presumption being that more data will translate into better health.

    The problem here is that efforts to increase “surveillance” in pregnancy have helped create the dire situation the maternity care system is in now, which is a crisis of overmedicalization, spiraling costs, and worsening outcomes. Our c-section rate has gone from 5% – 32% in the era of continuous electronic fetal monitoring (EFM), and EFM has never shown to improve longterm newborn health. A woman could easily have 10 or more ultrasounds in her pregnancy, despite a paucity (or complete lack) of data that its use improves health outcomes even in complicated pregnancies. If anything, most women would be better off with far *less* surveillance in their pregnancies and births (although a small minority would certainly benefit from more/better surveillance)

    Things that *have* proven beneficial in maternity care are bringing a companion for emotional/physical support and advocacy in labor (known as a doula), having prenatal care in a group setting, or carrying one’s own pregnancy records – interventions that have everything to do with empowerment and engagement and pretty much nothing to do with technology.

    But these “empowering” interventions are not the standard of care. They’re not even close to the standard of care. Modern maternity care is anything *but* empowering, and women are not autonomous. Last week’s big news was that Cochrane says that hospitals should “let” women eat and drink during labor – depsite the systematic review most hospitals will find ways to justify sticking with whatever their labor and birth oral intake policy is. We educate women about their choices and yet I have heard of probably at least one court-ordered c-section per month for the past year. A COURT ORDER because a woman tries to exercise her right of informed refusal. (Informed consent being, of course, meaningless unless a person actually has the right to refuse.)

    What has me so excited about social media is not the cool tricks it can do but the way it has completely disrupted the hierarchy. While I am a health care professional, the fact that I am a nurse-midwife for one and most recently practiced as a *home birth midwife* to boot means I’m marginalized way the heck outside of the dominant system. Online I trade insights and expertise with people everywhere along the spectrum from consumer to specialist, and information and ideas are exchanged freely.

    I would love for some of the energy and investment being poured into HCSM innovation to come to proven consumer engagement and empowerment efforts, and for that matter to maternity care, which (despite its huge “burden” on the health care system and young, internet-savvy consumers with significant informational needs) gets left out of many healthcare reform efforts.

  8. How does Darthmed know that it’s 95%? It’s likely not 95% who are uninterested in becoming informed, participatory patients.

    Micky D did not wait until everyone demanded a BigMac. If you build it, they will come.

    Besides, there are plenty of desperate sick people who may be able to make changes or save lives if the information is accessible. That’s what matters, right?

    Small, semi-relevant footnote: Dear Darth: Those of us with expensive to treat, incurable diseases get so weary of hearing that the “expensive chronic diseases are preventable” and the really patient’s fault. RA is probably the most expensive to treat & entirely unpreventable. A large percentage of RA patients seem to use the internet out of desparation. And the info that is widely available & highly rated by SE is often atrociously inaccurate. I’m just sayin… There is another side.

    • > Dear Darth: Those of us with expensive to treat, incurable
      > diseases get so weary of hearing that the “expensive chronic
      > diseases are preventable” and the really patient’s fault.

      Its not about all diseases being preventable … but its about where we get the most bang for our buck. It seems that the Health 2.0 agenda is being driven by “self-informers” (yes, I am one too) for “self-informers” that, honestly, were getting themselves the best that medicine could offer them (albeit not always great) long before symptom trackers, iPhones or even Google came on the scene.

      Instead, shouldn’t we be looking at why SO many people arent being screened for diabetes, having their pap-smears or mammograms, getting their kids vaccinated, or seeking medical attention when they’re getting chronic, debilitating joint pain? We know that early intervention is so much better at improving health outcomes AND reducing costs than trying to fix things afterwards. Maybe we’ll find that technology is the barrier, and maybe we wont – but the deteriorating state of US public health (depression, diabetes, heart disease) in the face of internet proliferation is testament to the fact that information democratization alone is not the simple answer.

      • Bravo! ‘….that [health] information democratization alone is not the simple answer.’ This is a profound fact, that need be appreciated at depth.

        I have drunk the participatory medicine koolaide, support Health 2.0 initiatives and have been studying and applying principles of preventive medicine since obtaining my MPH from the UCLA School of Public Health many decades ago. Yet, this nascent interest remains ‘tinkering at the margin’ of the transformational imperative.

        In this sea of aspiring or actual ‘self informers’ and the entrepreneurs so willing to aid and abet their health and wellness objectives, the context remains an overvalued and highly (bubble) inflated sick care system addicted to the cash flows of its dysfunctional financing paradigm.

        ‘Caveat emptor’ entry (whether ambulatory or horizontal) into that system with a health 2.0 or 3.0 consciousness per se, is no doubt a benefit for some; yet, it remains essentially impotent to drive the comprehensive re-engineering imperatives.

        Before an empowered consumer can sensibly deploy, and extract fair value from a market place of providers with pretax dollars from their HSA or FSA, we need a massive deflation in health care pricing. Unfortunately, we’ll need the equivalent of a real estate valuation collapse, before fair value of medical & hospital services (not inflated by 3rd party payment) is manifested. At that point we may have parity between demand for, and supply of, needed health care services, and the ability of Joe Sixpack to underwrite the cost of his family’s health care needs.

  9. I blogged about this today. The short version is, people will become participants when they see it benefits them. Just like any other technology or new approach, they must buy into it. When ATM’s and debit cards first came out, a lot of folks didn’t trust them. Now, just about everyone uses each. Why? Because they eventually realized the benefit.

    I think we sell people short. Yes, in the short term we do what works, but we need to plan for the long term. As I said in my blog, in 10 years, a bunch of us will be those 65+ who we are saying now won’t buy in. We need a “standard” though, just like we did with Beta vs. VCR etc. We need to all be able to “talk” to each other.

    Maybe I have on rose-colored glasses and maybe I’m a Pollyanna. But someone needs to be, and frankly, I don’t want to explore what happens if I’m wrong.

    • BTW…remember when you had to hunt for an ATM to use a card? And now you can use it anywhere, including for food, gas, and soft drinks or water in a vending machine? Technology had to catch up, and it did. So folks bought into it.

    • So, Robin, devil’s advocate here: re “people will use it when they see benefits” – what greater benefit is there than “people know it’s killing them”?

      I’m wondering if the only benefits that actually drive behavior are convenience and immediate gratification. People use ATMs because they want cash NOW, not during banking hours, or ATM cards because they don’t even WANT cash. Yes?

      Kelly, you know I empathize about your condition. Am I correct in saying it’s different from people who have severe weight problems (and sequellae) and continue to eat food that they know is bad for them, and sit all day rather than exercising?

      (I don’t want to hear complaints of discrimination from anyone; look at the words I said. And again that point had nothing to do with Kelly’s rheumatoid arthritis.)

      Fwiw I discuss this as someone who smoked cigarettes for decades, knowing it was bad for him. —Hmm, ultimately what drove my quitting was more my impact on others than on myself. My daughter, largely. Hm.

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  16. The core issue in this discussion, and not just in the US, remains awareness and education.
    During the growth of the medical world, we have lost our ability to deal with our own health.
    During the last 2-3 generations we had to start to adapt to the fact that we get far much older than our genetic make-up was prepared for.
    Unhealthy habits are appealing because they are based on survival issues built into our genetic heritage. It is therefore difficult to act against your “primal instincts” even knowing that you’re doing the wrong things.
    And then there is the issue of information and data overload. People do not know how to cope with it, they were never taught how to do that.
    I don’t know what the best solution is, what I know and what I try to do with my foundation is to enhance awareness and seek ways to effectively educate.

  17. While I do not know if 95% of patients are not inclined to pursue behavioral/lifestyle changes that will ultimately save/prolong their lives… I do know that *we* tend to respond well to incentives. Incentives or penalties are changing the behavior of hosp administrators. The recent fines levied have raised a ton of eyebrows and unfortunately added significantly to my “meeting burden”. Surgical checklists, wrong site surgery prevention, etc was on the drawing board at many Med Ops committees and OR committees… but it wasn’t until Rhode Island and California started fining institutions that action was finally taken. Where am I going with this ??? It may read like I want to punish those with *bad* habits—quite the opposite. IF we properly incentivize patients (and it looks like saving their life is not enough incentive) we will be able to save lives. How, return of a “significant” portion of premiums paid if certain goals are achieved. Wgt loss, HgbA1c reductions, nicotine free blood tests, certified letter from internist with “clean bill of health” etc. Perhaps if patients were able to recognize an economic benefit, behavioral change would seem less *painful* ?????
    Just a thought

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  19. the ANCC magnet hospital program has a pertinent requirement. as we develop shared governance at our hospital to promote decision making at the point of care; the patients’ bedside, we have to collect and document data for two years before we can even think of applying for magnet status. data collection is critical in order to justify and guide change. please don’t be deterred.

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  22. This thread highlights why I, a good liberal, object to every plan for universal coverage put on the table to date. Health care can’t be a right until wellness is a responsibility. We need a system where people who make a reasonable effort to maintain health are not penalized for getting sick, and where people who make no effort to maintain health do not receive unlimited subsidies from their neighbors to treat the consequences of their inattention. Paraphrasing Winston Churchill, economic incentives are the worst form of incentive, except for every other one that has been tried. Americans have grown used to a certain standard of healthcare, and it would be political suicide to try to can’t cut that back to a sustainable level across the board. People who don’t take care of themselves generally know that they don’t, and the political consequences of increasing co-pays, for example, for people who develop type 2 diabetes after decades of obesity should be containable. There are two constraints on what we can achieve in medicine: political reality and economic feasibility and each must be satisfied before we can optimize for some other sets of goals.

  23. A second comment: On Car Talk, Tom and Ray developed a theory: two people who know nothing know less than one person who knows nothing. This principle is scalable: social networks of people who know nothing about a topic are terrifying conglomerations of disinformation. I’ve seen this in both professional and lay communities: I’ve personally observed physicians inventing (easily falsifiable) “facts” about rare diseases, and I’ve seen groups of patients work themselves up about “cures” that have no measurable value. The classic case of patient-supported “cures” was described by Carl Sagan in one of his books about the waters of Lourdes as a cancer cure. It turns out (by statistical accident) that the spontaneous remission rate of people who went to Lourdes was lower than average for the population as a whole.

    In the 1950’s, the “sciencification” of medicine was fully underway and top doctors recommended a beverage known as “formula” as better than breast milk (it’s like eating food called “recipe” or medicine called “compound”). This faulty recommendation was then widespread in the medical community; I know a woman who wanted to breast feed her premature infant who was subject to ridicule by the hospital medical staff.

    The key to being the best patient you can be is to understand everything you can about what is known about your disease but to not drink the Kool-Aid enough that you can still doubt the stuff that is group-think (whether found in patient or medical communities) or wrongly condemned (like breast feeding once was).

    I think that if 5% of the population has the capacity to do this, we can be very proud of our educational system.

  24. Now, I’m not one to be the biggest advocate of social media in healthcare. Yes, I’ve talked about it a lot, but I’m ready to talk about something new. However, when I saw this, I felt compelled to respond. This is the quote that made me leave a comment:

    “What good is any of your data in the face of this crisis? People can’t sustain behavior change after being told directly that they are killing themselves. And now you’re going to get up there and talk about Flickr, YouTube, and blogs? What is the point?”

    Remember that we shouldn’t be using social media for healthcare for it’s own sake, we’re using social media because this is how people communicate now and where they spend their time online. They don’t want to come to WebMD to read through boring medical text (much less a pharma brand site), they want to keep playing games and checking their friends’ status updates on Facebook. It’s arrogant for us to think that our content is so compelling that they’d stop what they are doing and come to our sites. We’re also foolish to think that they’ll change their online habits and absorb information in new (actually old) ways because they should. By old, I mean page after page of text. Maybe video or images are better solutions for many people. And, perhaps, putting the content where they are spending their time online (read: social media) makes more sense than trying to drag them kicking and screaming to the places where content resides that WE think patients ought to read.

    • Jonathan,

      Arrogance is definitely an enemy worth fighting.

      I’m going to repeat a comment I wrote last year that speaks directly to what we’re talking about:

      I highly recommend the book, “Studying Those Who Study Us” by Diana Forsythe (Stanford, 2001).

      Chapter 7, “New Bottles, Old Wine: Hidden Cultural Assumptions in a Computerized Explanation System for Migraine Sufferers,” is particularly salient to this discussion. Forsythe writes, “Based on the fieldwork, I compiled a list of about 200 queries to which migraine sufferers wanted to know the answers. The restriction of the system’s explanatory frame to the patient summary made it impossible for the system to address most of these questions.”

      One of the top questions asked by patients but not answered by the computer: Are migraines going to kill me? Experts might dismiss it as a silly question, but it’s not silly to someone experiencing a debilitating migraine.

      -endquote-

      Fieldwork for anyone developing such a tool now would/should/could include social media. Wonder what questions people are asking about the condition you’re focused on? Monitor blogs, tweets, and any other public record of what people are actually doing, actually saying about it.

      Your perspective on the field is particularly valuable. Thanks for posting this latest gem:

      The Best Pharma Products According to Patients
      http://www.doseofdigital.com/2010/02/best-pharma-products-according-patients/

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  27. Keep doing what you’re doing, Susannah. As a social scientist, you have an important knowledge and skill set.

    IMO, there’s a screaming need for those who are able to view what’s going on (or isn’t) in healthcare delivery from a socio-cultural perspective. Your job, as I see it, is as a Seer who offers others an opportunity to understand who and what’s involved with the social construction of healthcare.

    I had a mentor who used to say, “Everything is data, but data isn’t everything.” And while I agree with her perspective, the data about social media, healthcare communities and the solutions they’re developing cries out for analysis by skilled, smart and, yes, compassionate social scientists like you.

    • Meredith: love it!

      “Everything is data, but data isn’t everything.”

      Indeed; but just getting to the point of neutrality of seeing ‘it’ as ‘data’ is tremendous growth, no?

      IMJ, the challenge will always be in holding space for the seduction of ‘story’ impulse too often embraced as fact or truth with a capital ‘T’. Humans apparently must manufacture meaning and therein lies the granular dilemma. We are judging machines. May of us are paid to judge; yet, more often than not, our judgement is based on story vs. root data upon which we construct our reality.

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  29. Susannah, I tend to take a slightly different bent on Healthcare 2.0, a bent which does not intentionally tie to the notion of Internet 2.0, but rather to the notion of an industry desperately needing to reinvent itself.

    A few definitions may bring some sense to the discussion. I find it helpful to distinguish the business of healthcare from the healthcare business. I think of the healthcare business as the clinical side, and the business of healthcare as what it takes to make dollars and sense of it all.

    Although the healthcare business in the United States is world class in many areas, in many hospitals the business of healthcare is mired in a 0.2 business model. It is often run like a franchised fiefdom of duplicative and ineffective cost and revenue silos—I’m going to duck for a moment in case anyone disagrees strongly with me.

    I’m back. This 0.2 business model is being forced into a 2.0 model whether it wants to go there or not. Whether it is capable of making the journey is debatable. The model is regulated, and is about to be reregulated—to what—nobody knows. What national leadership there is is busy waving the magic IT wand thinking that will facilitate the transition from the dark ages and support the business model of National Healthcare—which, by the way, has little if anything to do with the model providers need to run their business.

    EHR, if done wrong will be nothing more than a multi-multi-million dollar scanner. Providers will indeed be paperless. However, paper is not the problem. The goal should not be the elimination of paper as though paper is a bad thing. If efficiency equates to speed, to doing something faster, the goal should not be efficiency. It is possible to streamline bad processes and do them faster.

    To get to Healthcare 2.0 using my definition, to redefine the business of healthcare, providers must move towards being effective, towards solving business problems, eliminating waste and duplication, retaining doctors and patients, and running it like a real business.

    My best – Paul

  30. Susannah,

    1) the myriad of comments, each interesting and unique, proves ipso facto that participation is alive and well and healthier than ever before.

    2) The issue you raise isn’t new. It’s about motivation. Most people aren’t motivated to do the things that are necessary to extend life expectancy, because they aren’t initially fun. I always use the example of smoking: even before the first puff, people know that it’s unhealthy… Why do they smoke? It’s some sort of trade off between short term pleasure and long-term risk. That’s been well studied by psychologists and biologists.

    3) The innovators have to be there to pull us all forward. So, we must all continue relentlessly to espouse the things we know will help. Look at the learnings from “observations of daily living” and we’ve only just begun…

    But it’s great that you did this post– so that the debate can rev up and be totally there in Paris for the conference at which you’ve kindly accepted to come “in person”.

  31. I see multiple conversations going on here.

    I want to clarify that I, as a patient, don’t want doctors telling me how to live my life. I want them to help me when I go to them to live my life to the fullest medically. I’m not into a nanny state at all.

    Secondly, I hear what Paul is saying. Paul, as a patient, I want to be able to sit at home and pull up my medical records because a) I’m sick and b) it takes less time for the health provider and for me in the long run. Time is health for me. My time is money, too. I also work for a living.

    Dave, you said

    I’m wondering if the only benefits that actually drive behavior are convenience and immediate gratification. People use ATMs because they want cash NOW, not during banking hours, or ATM cards because they don’t even WANT cash. Yes?

    You realize many people balked at having to use an ATM. We were a paper society (checks) and to pay a charge to get out money? No way! Banks primarily set up ATMs to save money by hiring less tellers. Customers were encouraged to do this by the bank not charging fees so they had readily available means to get cash and make deposits at any time. But customers could only use their own bank, not other banks or other ATMs. (Sound familiar?)

    At some point (around 10 years later) banks realized they could make money by allowing customers to access from other ATMs, so they joined forces. Customers, finally hooked on the ease of using an ATM, bought into it.

    Debit cards are another story, but with a similar plot.

    Howard, I like the incentives. My incentive to get my HgbA1c low was to protect my body as well as I could although Cushing’s does not make that easy. I eat very low carb and save my carbs for fruits and vegetables. I have been able to get my HgbA1c down to 5.4, amazing even my endo. Did I lose weight doing it? Sadly, no, but I maintained even with a surge in my Cushing’s symptoms, so there is that. How many folks know what a HgbA1c is? Do they care? Probably not. But given the right (positive) incentives, they might. Which leads to what Paul said, to which I agree:

    We need a system where people who make a reasonable effort to maintain health are not penalized for getting sick, and where people who make no effort to maintain health do not receive unlimited subsidies from their neighbors to treat the consequences of their inattention.

    Another thing on which we really haven’t touched, but came to my attention during the #hcsm discussion on twitter last night, is that folks tend to perceive the nation’s medical system by their own experience. And what I experience is nothing like what some folks in that discussion seem to think I experience. There is a near monopoly where I live with medical/health facilities, and I’m pretty much locked into it with very little choice. It really doesn’t matter where I go, because I run into the very same problems at any office. Therefore, I think we need to think twice about about generalizing our statements/thoughts/perceptions and assuming they fit for the whole country. They don’t. That’s why I travel so far to see my doctors.

    Jonathan, put the information into online communities where folks go to find out things when they realize they need to know it. Go to the patient. That way the patient doesn’t have to looking for info and get lost in the sea of “stuff”. Online communities are a fantastic resource.

    Darth, you said

    Can we really say that giving patients the right to demand their health summary / test results will really reduce morbidity / mortality by that much? I’m not really sure that we can…

    I think you have it backwards. If patients want to die younger, then let them. But don’t expect me to pay for their mistakes. However, if I am concerned about my morbidity/mortality and want my data, then I should get it. I care about ME! Just because others don’t care, doesn’t mean I shouldn’t be able to access what I need to take care of me.

    I’ll have to stop now, although I have more I’d like to say. Later, maybe.

    • “Another thing on which we really haven’t touched, but came to my attention during the #hcsm discussion on twitter last night, is that folks tend to perceive the nation’s medical system by their own experience. And what I experience is nothing like what some folks in that discussion seem to think I experience. “,

      Oh boy. You said it. This is one of the reasons why people who are sniffing onto the right stuff can’t seem to make it work. Health 2.0 particularly. Technology doesn’t solve problems. People solve problems. Technology empowers the people.

      Living with chronic illness or serious health episodes is no picnic. Yet most of the “solutions” are designed by people who have absolutely no experience with what that is really like. So you get football plays designed by armchair quarterbacks. That then pollutes the entire ecosystem around a solution, as investors, providers, patients, and politicians can’t get the stink off.

      Creating a culture of health and vitality is desperately needed. But it has to stress compassion and empathy. Not all of us are born perfectly healthy through no fault of our own. No amount of work ethic changes congenital disease or unfortunate circumstances. Most of all, we’re all going to die. Usually unpleasantly. As a culture, we must embrace these realities and craft systems that empower them, not squelch them.

    • Robin, thanks so much for this clarifying comment – it’s at this point in the conversation that I started to wonder if we need to move to some other venue – a wiki or some other way to capture what we’re learning here. Don’t want to stop the convo, but do want to recognize that a blog thread (and tweets) are a fleeting record.

  32. Here’s what I like about the e-patient movement: the increasing diversity of communications about various illnesses being disseminated to the public. We now have tens of thousands more people reaching out, encouraging people to be healthy, rather than just the usual suspects (the surgeon general, Mayo Clinic, CDC). People with diseases or problems are online sharing their unique perspectives. That uniqueness makes it MUCH more likely that one of these messages will get through the clutter and connect with someone who needs to hear it and make a change.

    When I was in college, I remember sitting in some office and noticing a poster on the wall. It had a photo of a young man in a wheelchair. The headline of the photo was something to the effect of “I only ran out for 5 minutes”. The subject was making a quick trip to the store, so he didn’t think he needed to put on his seatbelt. He got in an accident and was paralyzed. For whatever reason that poster REALLY spoke to me. I was him, deciding that sometimes I should wear a seatbelt but other times it wasn’t necessary. Since that moment, I have worn my seatbelt no matter what. Why did that poster have such an impact on me? Who knows!! For me it was a message that worked. That’s all you need.

    Thanks to e-patients, we no longer need to rely on one or two messages to convince people to make good decisions. There are many different methods and tones of communication, created by people from different walks of life, different ethnicities, different countries, different political persuasions … I think that’s a good thing.

  33. damn…. it’s hard to be late to a party that you’ve been trying to throw for years. =)

    DarthMed makes some good points. HIT is not going to solve the problems. A lot of people know this. Putting more HIT in place is akin to putting jets on a horse drawn carriage. I laughed when I read the suggestion that in order to get your welfare or tax return checks you need to present evidence of a health screening. DarthMed must work for Quest Diagnostics or J&J and not Allscripts or EPIC. =)

    There are about 2/3 of any given commercial population that is carrying 3 OR MORE risk factors and doesn’t even know it (quantifiably speaking). Current schemes of divining these risks (predictive modeling, HRAs) and disease management are faulty. These are people who almost never generate claims, so they are ticking timebombs. We, as in the Health Care Industry, don’t intervene with them until it’s essentially too late. Read another way, it’s job security, as we (again) do very little until they become very profitable customers.

    So that’s the current incentive. Sick people are profitable people. Reverse that dynamic and you have something that works.

    The analogy of seat belts is a good one, and is one I’ve used in presentations before. It’s law almost everywhere and yet we all still cheat. It’s human nature to cheat. The difference is that it’s been drilled into our heads that seat belts save lives. The difference is that the industry saw that it could make more money saving its customers rather than killing them. Where has it been drilled into our heads that having an LDL under 170 saves lives? Where’s the money in keeping people out of bypass surgery or stents? It’s a marketing problem more than anything else. Convince people that it’s cool to be healthy, active, engaged. C’mon… everyone’s doing it!

    If you really want to make behavior change cogent, actionable, and sustainable, you’ve got to pay people to engage and activate. Pay me $10 a week to not smoke and test me once a quarter to prove it. Because $600/year (+tests) over 20 years is a lot cheaper than the $50K+ for COPD treatment I’ll be spending when I’ve been smoking for 20 years. Instant ROI. Long term benefits.

    Outcomes per dollar spent. That’s the simplest way to express it. If we’re not putting our money where our mouth is and measuring the impact of that money, then we’re just playing whack-a-mole.

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  35. I really want to address what Stales had mentioned earlier about going beyond exercise and diet and including elements from other relational areas such as environment, food supply, etc. This is where the public health angle comes into the importance of Health 2.0 and I think from a much broader sense of Heatlh 2.0 (or Public Health 2.0) is the cross-disciplinary collaboration aspect as far as prevention.

    Enabling consumers to do the right thing and making it easy for them is a huge great point. The example of recycling goes to show that Americans still think it’s somewhat of an optional, do-it-when-I-feel-like-doing-good type of deal. When it becomes attached to rewarding feelings and actually built into the community, it will make a big difference.

    I’m a big proponent of the low-tech, not always sexy uses of technology and new ideas to make the health world move forward.

    • Enabling consumers to do the right thing and making it easy for them is a huge great point. The example of recycling goes to show that Americans still think it’s somewhat of an optional, do-it-when-I-feel-like-doing-good type of deal. When it becomes attached to rewarding feelings and actually built into the community, it will make a big difference.

      Again, a marketing problem more than a technology or even policy problem. Especially when it comes to complete community. That cheeseburger you had for lunch? Real cost? $150. What if you got paid $150 by a consortium of health, environmental, and energy stakeholders to not eat it?

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  37. Interesting that in this discussion, the word “evidence” has not been mentioned (except in terms of welfare payments and annual health checkups), nor the Journal of Participatory Medicine, which seeks to provide scientific legitimacy to the movement. Indeed, obi-wan-kanobi Esther Dyson provides an opening essay to the new publication — Why Participatory Medicine? — certainly germaine to this discussion, but, along with the entire set of essays by thought leaders in the field, is sadly overlooked here.

    As editor-in-chief of The Scientist magazine, as well as the acting managing editor of the afore-mentioned journal, I urge readers and contributors herein to consider that massive signup to the e-patient revolution will require not only evidence of the interventions that are effective, but also educational initiatives that transform evidence to practice. This is the journal’s mission, and without research bolstered by narratives from the front lines, there is little hope that healthcare professionals will become partners, or that policy makers will understand the stakes, or that patient advocates will have tools, or that patients will learn to participate. I urge adherents to the cause to contribute, read, and speak frequently of the journal specifically, and science generally, as a real solution to the problems and frustrations voiced here.

    • Yes, paricipatory medicine/Health 2.0 needs that evidence base to attract the attention of mainstream medicine. Anyone who’s not convinced should read the “Group Therapy” Time magazine piece, particularly this gem:

      Dr. Sharon Murphy, a pediatric oncologist who organized the IOM conference [said], “There is a strong scientific underpinning that is lacking in this Web 2.0 stuff.”

      Read more: http://www.time.com/time/magazine/article/0,9171,1957460,00.html#ixzz0eTREwwVC

      Then again, it’s also OK with me personally if some innovators forge ahead instead of waiting for the medical journal peer review process to bless them. That’s why the Journal of Participatory Medicine is such a fantastic venue: recognizing “this Web 2.0 stuff” as important while demanding excellence.

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  42. I had a long chat with B.J. Fogg yesterday of the Stanford Persuasive Technology Lab. He’s been studying how to change behavior with the use of technology for years, so is another Obi-Wan worth following. Our topic of conversation: changing health behavior with the use of technology. His 9-word mantra is something to keep in mind: “Put hot triggers in the path of motivated people.”

    As in all marketing, whether social or commercial, consumers segment by personal choice. Not everyone wants to participate in participatory health. So be it. There will be an adoption curve, which has already begun in places like PatientsLikeMe which is gathering the sort of evidence that Sarah Greene smartly points out will be key to moving participatory health to mainstream adoption and policymakers’ support.

    Congrats to all participants here for this great conversation, and thx to Susannah for starting it.

  43. “If you build it they will come” applies here too. It may be true that 95% of patients do not want to use social media to understand their disease – but that is only TODAY. The use of social media is exploding, and will eventually become something that most americans take for granted. To improve the health of a Nation, you must be forward thinking and ensure that you are providing tools that will help today and tomorrow. The population of the United States is officially 308,604,151 people. If you accept Darthmed’s numbers, that means that Social Media can provide assistance and improved education for 15,302,207. That’s not only improved health outcomes and disease managment for 15 million americans, that’s potentially billions in savings on diseases such as Diabetes, Heart Disease, Arthritis, etc.
    Hard to not be a champion of social media in my mind.

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  45. Talk about feeling late to a party I should have thrown – the issue of motivating consumers is core to our mission at WEGO Health, and to much of my career in health communications. SO a few thoughts:
    – “No One Is Motivated”: true ‘dat, with the exception of 1-2 million Health Activists in the US alone; very little in this world started with everyone buying in at once
    – “No One Cares About The Tech”: there is nothing pointless about harnessing the passion of early adopters, whether they be ePatients or Health Activists or both, to push/teach/support/cajole the masses; I taught countless pharma execs how to use their first web site back in the 90’s, and ePatients can show the world the benefit of Health 2.0
    – “No One Really Uses This Stuff”: Let’s take health social media as an example. Search for ANYthing health on Google, and check the first page of results – there’s social media – being “used” by the masses.

    SO much more, so little time. Great discussion all.

  46. Wow! Great conversation.
    Two thoughts to add:
    1. Since we used flint to make fire, tools were meant to help us do things we want to do. How can we help people want to be healthier, not in a new year’s resolution “I know I should lose weight” sort of way, but in a ” it would be unthinkable not to do my best to care take of myself” way.
    2. E-patients and the other 95% often come in contact. They are our friends, family, support group members. Like measuring newspaper readership, how much of this information is passed around, sought, ingested, and disseminated throughout communities. Health 2.0 is helping more than just those of us typing away in the blogosphere.

  47. I simply couldn’t miss this party …

    I, unfortunately, share some of Darth’s skepticism with the current crop of Heath 2.0 and mHealth tools, as I have recently written. But deep down I also share an optimism that 2.0 technologies will enable us to personalize healthcare and mHealth will enable us to deliver healthcare to many more people for little incremental cost. These technologies can complement more traditional methods, not necessarily replace them.

    I too experience the dissonance induced by immersing myself in the worlds of the motivated patient (characterized so well by the visitors to this site) and the patients I meet every day for whom this idea is so foreign. But Jack Barrette’s point about harnessing the power of early adopters usually wins out and keeps me going forward. This is an iterative process that we are part of. And iterate we must. As a Web 2.0 success story, think of where Amazon is now compared to their founding as a large, searchable bookstore. And their innovations like “one-click ordering” have powered the next generation of success stories like iTunes and the App Store, even though they were ridiculed when introduced and adopted slowly at first. Low adoption simply makes me ask, “what can we do better.”

    So I have faith that we will get it right, or at least make it much better, one day. And so I keep trying.

    But man am I glad there are people like Darth around to provide the voice of reason once in a while! Thank you for the reality check.

    And thank you too Susannah … very influential conversation forming here.

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  49. (disclaimer: this may be duplicate as I didn’t read all the above comments…)

    This is not a new conversation, not a new battle. To me this breaks down into the same old ‘personal accountability’ vs ‘policy’ discussion. It’s a false dichotomy that is as old as false dichotomies.

    Only now this discussion is in regards to a new tool: the internet; and the amazing potential of accessing and aggregating and learning from the data that comes with near ubiquitous access to the internet.

    However it is still a false dichotomy. We can and will continue to ask (empower?) people to pull themselves up by their (virtual) bootstraps. We can and should continue to work towards changing policies that effect our surroundings and *nudge* behaviors.

    We are always looking for technology to be the next magic bullet (bc it’s non-controversial and tends to involve profit). Yet the double-edged sword of technology always seems to over-promise.

    So what’s the point of Health2.0? It’s one really important variable and tool to improving our health and lives. Keep on it Susannah!

    • I think it’s important to have something in place for those who want to have the information in a timely manner. To me, that’s empowerment. Right now, maybe only 5% of patients want that (using Darth’s numbers). But when it works for those 5%, then 10% and then 20% will want it. Maybe not 100%, but enough to warrant it.

      So, right now maybe paper copies and phone calls will do. But very soon, it will be like a long line at the bank of disgruntled customers because they want their money now and it’s not ready. Perhaps my analogies are a bit simplistic, but for those who are ready to be empowered, we need to be ready to hand them the tools for that.

      To me, it’s not so much about accountability as it is empowerment. It’s very hard to be accountable if one is not empowered to account to oneself. And it’s hard to hold patients/customers/clients/people accountable if our medical facilities and employees can’t be held to standards which meet the needs of their patients/clients/customers.

      Empower me (the patient) with the tools to make sure I am getting my data, have access to my caregivers, and am ensured transparency of all that happens between me and them.

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  52. Earlier today, I was reading about research that revealed that people have a happiness “set point”, i.e., a base level of happiness to which they typically return, after episodes of increased or decreased happiness. This set point is 50% genetic, 10% circumstantial and 40% based on intentional activities … but even the effects of those activities tend to “wear off” after several months, returning [most of] us again to the base level of happiness.

    I’d earlier read an article by Kelly McGonigal exploring whether (and why) after an especially good deed, are you destined to sin? (we are, and “according to the researchers, it’s all about maintaining a steady sense of moral self-worth” – a set point for self esteem).

    I wonder if a similar factor is involved in health, i.e., that we have a health “set point”, that we unconsciously seek to maintain, and if/when we do something healtyy, we’re destined to counteract that by doing something unhealthy.

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  54. I recently wrote an article about e-patient connections-one of my favorite topics!- and as soon as it posted, I received an e-mail from a PR person who had read it (even though she had no clients in it!) and she wanted me to know that it touched her on a very personal level as someone who is going through a “medical journey.” This tells me that although we may not see the uptake we would like, it does matter very much to some people. “It matters to this one,” the boy said, as he threw the starfish back in the sea. Right?

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  57. Thanks for the thought provoking conversation.

    I as scroll through the comments and reflect back on Darth’s original skepticism I feel like part of the story is missing—Health 2.0 extends beyond data, diagnosis and treatment. An online experience can offer psycho social health related benefits as well. Just ask e-Patient Dave or visit the CaringBridge.org Facebook fan page ( http://www.facebook.com/CaringBridge) to hear how services such as this have the ability to positively impact patient’s lives and ultimately, health. For these patients and their caregivers social support can be a lifeline. Dr. Charles Raison, an assistant professor of psychiatry and behavioral sciences at Emory University School of Medicine and CNNhealth.com’s mental health expert quotes:

    “The jury is still out a little bit on whether social support helps you survive — but it definitely helps you live better.” He noted that while some studies show a survival benefit and others don’t, almost all show an improvement in quality of life. “When people provide each other with support and encouragement — that can make the difference in a person’s life between … surrendering to hopelessness and … finding the gumption to keep going.” (http://www.cnn.com/2009/HEALTH/06/15/social.support.benefit/index.html)

    • Much as I spend time on the internet, real human interaction beats “social technology” every time.

      Why spend $10M setting up a online support group for 1,000 active patients around the country, when with that money we could fund 10,000 regional support groups (touching, say, 100,000 patients) where people could actually chat with each other, share drinks and actually exist in the same space.

      Prof Raison is talking about real social support, translating that into keystrokes on a computer is selling the possibilities short. Or maybe, we should simply invest in better chat bots…

      • DarthDude,

        Completely agreed about the idea of spending $10k per patient on a big platform. I don’t know how familiar you are with ACOR (a pile of plain text listservs) but a year ago at Christmas they tried to raise $100k (much needed) and only pulled in $20k. And I think they serve tens of thousands – I don’t know how many.

        Interesting (IMO) is that ACOR’s listowners adamantly stick to plain text because so many of their members don’t have broadband. My kidney cancer group there has a member from Pakistan whose mother has the disease; ACOR’s letting them bring their info to the local oncologist.

        Sometimes in my talks I say “Whatever we spend, let’s set aside 1% for the patients. We’ll get a lot of adoption for a tiny spend.” When I say that I’m thinking about ACOR.

        I’ve got nothing against great and powerful websites, but when it comes to community, it’s the people, not the platform.

        And as Pew’s data shows over and over, when you count handhelds as an online device, the ethnic differences in online presence disappear. I’m no policy wonk but it’s pretty clear to me that if we want to reach humanity, we should go where they are. This was #5 in our white paper’s Seven Preliminary Conclusions: Whenever possible, healthcare should take place on the patient’s turf.

      • I second Dave and Meredith. The Cushings-Help support boards and websites serve people all over the world. I am closer to some of the folks overseas (and places in North America) than some of my family. And getting out to physically meet in a group is nigh unto impossible sometimes. Not to mention if I need to reach out to someone immediately, there is always someone up and ready to help. Usually, between our support boards, facebook, and twitter groups, there are quite a few there for me. And I am for them.

        The resources and comraderie that having something online where anyone can reach out is only possible in the “internet age”. There is no way this amount and quality of data and research, much less caring and support, could be emulated in “real life”. But this IS very “real life” to us.

        I am going to ask MaryO (Mary O’Connor), founder/owner of Cushing’s Help to come comment on the running and cost of the services she provides. We do sporadically donate at our own discretion, and she never asks for it, so I don’t know the true cost. I do know she pays most of it.

        As Dave said, it doesn’t take a $10K/person. It did/does take a lot of time and commitment on MaryO’s part. And I imagine in Gilles’ part, too, with ACOR. Probably others.

        With warm regards…

      • It doesn’t take lots of money to offer a reliable support group online that can support hundreds of groups and hundreds of thousands of members. Seriously? Maybe $200-300/month. That’s it.

  58. Dear Darth,
    Some patients are physically or psychologically unwilling or unable to gather in real life (IRL). Them them/us, virtual community is not only a viable alternative, in some cases it’s essential and life-saving.

    • But Meredith – thats why we have tools like skype/IM, twitter, email, second life, facebook – so people can have social experiences even if they are unable to socialize “IRL”. I dont object to folks taking advantage of those tools at all.

      What bothers me about “Health 2.0″ is that it is demanding additional resources and energies that I dont believe are providing much benefit above the generic non-health stuff thats already out there. Resources that could be better applied to address real, preventable health challenges.

      • I dont have much medical experence, but what little I do have sugests that the energy required to get well in this day and age is needed. And yes, it could be used in other ways. But when you have doctors that run a business instead of a service and operate in a holier-than-thou attitude, it REQUIRES the paitent to be their own doctor. And I’m not talking about just getting involved, but actually having to force the doctors to run tests aginst their own will just to get a diagnosis! If it were not for comunities such as Cushing’s Help, I would probably follow the same fate of my mother, who died at 54 years of age. She just followed what the doctor told her to. It is ridiculas that we have to learn the equivelent of a degree in medical science just to get well! If it were not for the online comunities, specifically Cushings Help, I would not know what to look for and what it means when my symptoms flair up, and I would not know that my current doctor is full of it. The average person on that board knows more about my dissorder than he does, and he writes journals entries about it.
        This disease messes with you mentally so much, that talking to anyone outside of this computer screen is nearly impossable both physically and mentally. I couldnt sit and say all this in person. Plus, the anaemity helps many people become more confident in sharing their experences, knowledge, and conserns.
        To say that communities such as Cushing’s Help is no more helpful that People Magazine’s “5 ways to a slimmer you” is a ludicrous and ill informed statement.

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  60. Voice of Reality? My reality is that thousands of people have Cushing’s, a disease that most doctors won’t recognize, test for or treat. If doctors don’t believe in Cushing’s, they’re certainly not going to tell patients about others who might have it.

    A doctor’s office would be the perfect place to get patients hooked up with others for support. But it usually doesn’t happen. I have talked to many others who went to the same doctors as I have. I only found out by chance when they called me about something else. No doctor has ever suggested calling another patient.

    I also happen to have kidney cancer. My doctor, of course, didn’t tell me about others in the area. In fact, there might not be any. I turned to my local cancer center. They have lots of support for all kinds of cancer but not mine. I asked about this and they suggested I start something. So, I set up a meeting time and no one came. There must be other survivors out there (like e-Patient Dave!) but I’m not finding them IRL, but online. That’s the only place I can learn about new treatments and get ny kind of support.

    So how, if not IRL life do we meet other patients? “…skype/IM, twitter, email, second life, facebook”…If you didn’t find others with your condition on a website, how in the world would you know who to call or email?

    That’s why, in addition to the message boards and features of the cushings-help websites, we branch out into the greater Internet with a presence most everywhere. Who knows? Maybe a friend of a friend will see something about Cushing’s on Facebook and ask about it. Perhaps another person will find a diagnosis easier and faster.

    Cushing’s is a very real and very NOT-preventable health challenge. There aren’t enough of us patients in any specific place to warrant local meetings other than a very-occasional lunch. Online is how we discuss when and how to set up a face to face meeting and usually those are only 3 people at most. Online is where we can get together to talk, to IM, to find out people’s Skype numbers and so on.

    I’m not sure where funding info comes from. Being a “rare disease” we have only about seven thousand members. I know that many “Cushies” are out of work, have little or no insurance, pay a lot for testing, even more for surgery so I don’t charge anyone anything. I do accept donations if anyone cares to send them in. I do all the work for the websites (yes, plural) and the cost can be kept to under a thousand dollars a year, if careful.

    Where did the 95% figure come from? I know that, on autopsy, 25% or more of all people have a pituitary tumor ( http://cancer.stanford.edu/endocrine/pituitary/ ). How about getting the word out to THESE people, while they’re still alive?

    • Mary, first I’d like to congratulate you on a great resource you provide – doing a lot of good for so many with, I assume, very little assistance.

      But I ask you – with $20 billion being committed to ‘electronic health’ roll-out programs, $5-$10M being dished out by VC every week on Health 2.0 ideas that are destined not to be profitable, undisclosed sums burnt every month by Microsoft and Google on health platforms that arent sizzling… wouldnt we do more good if funds like those were spent on grants for services like yours, as well as increasing the availability of services / treatment / care?

      I think Health 2.0 gets most of its credit on the back of efforts like yours, which – if I were in your place seeing the $$$s flying about – would make me upset.

      • Darth,

        Her sites ARE Health 2.0. The google and microsoft developments either will or wont work. The choice is really with the masses and how they use it. If no one used twitter, it would not be here today. Half of my job now requires me to study these very trends in social media. While grants for services like Mary’s would help, we do not know what is on the horizon. And it seems that you keep going back on yourself by saying that you need to meet IRL, that the message boards offer “no real help” but then suggest that money be derived that way. IMHO, the more tools we have, the better doctors we can become.And patients are increasingly having to become doctors, from a certain point of view. (Star Wars fans should appreciate that last bit!)

      • When government funds are spent (grant or otherwise), there are hoops to jump through and so much bureaucracy that the good gets lost in that mess. I am of the firm belief that the only way these grants would work is if they were given with NO STRINGS ATTACHED. And you and I both know that won’t happen. We will get back to someone telling us they know best. We know better.

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    • Thomas, I completely agree. I didnt want to delve into that since this was more of a patience advocacy topic. I myself cant afford health insurance but I have the pleasure of having to pay out of pocket any tests I have done for Cushing’s. Its rough out here. We can either go broke or die.

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  63. Here is how this post (and former post which led to this one) and the comments have sorted in my mind:

    1. The system we call healthcare needs to improve.
    2. In the short term, patients need quick access to their medical records, testing/imaging, and lab results.In order to get “quick access”, even in the short term, something/someone will have to be added to what is already there. There aren’t enough people to handle a demand for that by even a small percentage of patients. (Why else the 30/60 day rule with HIPAA? Oh…well, maybe so they can sift through information to make sure only what they want patient to see is given to patient.)
    3. Just like with my ATM analogy, to save money HC will have to automate this process. Customers/patients will “self-serve”.
    4. When a few customers “self-serve”, the numbers of others will increase quickly, perhaps even exponentially for a while.
    5. In order for patients to self-serve, HC is going to have to be transparent. No longer can they sift through what patients get to see.
    6. Only with technology will this self-service be possible.
      • Robin,

        I went in and edited your comment, inserting “OL” and “LI”‘s to supposedly created an ordered (numbered) list. But it appears our WordPress theme is a wee bit demented, so you get what you get. Sorry!

        “Demented Templates”: great name for a rock band… or would they be headbangers?

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  65. Sisters and Brothers, allow me to give ye a little faith booster!

    Sure, it takes a moderate to highly activated patient to “pull” health information therapy into their browser or iPad screen without being prompted to do so by a clinician. There’s as app for that and there is a population segment that will pull (a lot higher that 5%, I might add).

    There is also an app for clinician intermediated Ix prescription of health information. Clinician initiated “push” messaging has the power to get the consumer to inspired to take action under the guidance of a care plan. This method is crucial to reach the less activated population.

    It is inevitable that we are going to invest $Sagans (i.e. billion$, and billion$) on HIT. It is up to us to call for patient engagement features in these tools. It does more harm than good to dump a bunch of clinical data in a patient’s lap without consumer oriented information therapy that helps them understand the data and make better health decisions and change behavior.

    This is where contextual search comes in handy. Smarter search tools that suggest Ix prescriptions to clinicians based on diagnostics, orders, meds makes it easy for clinicians to adopt the practice “push” Ix. Smarter search also facilitates system “push” to that, just in case the clinician didn’t provide it, a patient can get relevant documents to help them understand their lab results and make better decisions e.g. “Dang, my cholesterol is really high, maybe I should have cheerios for breakfast instead of biscuits and gravy”.

    What does this have to do with Health 2.0? It’s just a communications platform, man. Don’t hate on it. We can still use the printing presses along with the iPads. But to not integrate our communication modes with whatever the people are using would be a massive missed opportunity.

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    • Thanks, David – “our bodies, ourselves” is indeed a rallying cry for the ages, not just women in the 1970s. And I’m definitely going to work “the juice ain’t worth the squeezin'” into my talking points (somehow).

      • I’m getting set to update the “Navigating Health Care” chapter of none other than “Our Bodies, Ourselves.” I’m hoping to bring emerging Participatory Medicine concepts into the chapter. Anyone involved in this discussion who is willing to provide input on revisions from the 2005 version of this chapter please contact me. midwifeamy [at] gmail.

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  68. Hi Susannah,

    It was great meeting you at BIBA. I read your blog post and recognize questions that health campaigns and interventions have tackled since the dawn of public health.

    Behavioural change theories explain the challenges people face when they choose to change their behavior. Models also exist to predict a person’s likelihood to change behavior. And they all have a central theme: knowledge does not equal behavior. For an intervention or campaign to be successful it must address layers of attitudes, beliefs, motivational and environmental factors.

    Whether it’s dropping a bad behavior or picking up a new one, most people cognitively understand why they have to change their behavior. The tricky part is the how. Many people attempt to change behavior and are discouraged when they run into barriers. Worse even, they may only have control over some of those barriers.

    Take for example the chronic patient who opts for the fast-food meal. Let’s brainstorm the factors that influenced his choice. He knows he shouldn’t, but does he have viable options? Are there tasty, convenient, satisfying and affordable salad places in his neighborhood? Does he believe that a salad will make a difference after so many years of fast-food? Does he believe he has the power to make a difference in his health conditions? Or does he believe that medications alone will help his health? Are his health issues overwhelming him to a point he’s given up? Questions like these address a sliver of the factors that influence choices that may hinder behavior change.

    Is making accessible and reliable health information available worth it? Definitely. For the self-starters out there, Health 2.0 is a valuable tool towards a healthy lifestyle. For the rest, we can hope that simple and broadly available health information will support and promote a cultural shift.

    So once again, thank you for your contribution to the field. Health campaigns need Health 2.0!

    Very respectfully,

    Sandra L. Paredes

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  72. Darthmed brings up a good point — the solutions required to better public health are not fancy IT apps but low-tech and sometimes “unsexy” approaches. Behavior change isn’t born out of labs at Google, but through health communication approaches that are based on theory and practice. People are rarely self-motivated to become informed and change their behavior unless they are brought to a point to do so (i.e., internalize risk, increase fear).

    With that said, though, Darthmed’s comment is very narrow in that it assumes “fancy IT” is a means to an end. It’s not. Health IT, Health 2.0, and the data behind them, are merely tools that can be leveraged to enhance campaigns that aim to change behavior.

    Never before have public health practitioners been able to reach audiences at such a targeted level or been able to interact with individuals and mobilize them at the grassroots. Yes, some “low-tech, unsexy approaches” still work, but are we going to ignore the emerging tools and data that help us reach people with those approaches?

    I’m a strong believer in constructive criticism — it’s a good thing :) — but in this case I believe it’s born out of a lack of understanding and unwillingness to think beyond the “unsexy” box

    Susannah, your research and reports are invaluable and have been extremely helpful in my work :) Keep it up!

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  83. I think it is also worth considering what factors are within our domain to effect through the provision of healthcare and supporting educational materials, and which ones are not addressable via that framework. Much of the long term healthcare problems that individuals face are the result of societal forces. Eating well is hard when every adult in the house works full time with a substantial commute. Regular exercise is less feasible around a demanding schedule as well.

    Then there are the political / economic causes such as agricultural subsidies that make high fructose corn syrup an ingredient of choice or a increasing disparate income distribution that tracks closely with health. And when it comes to information technology and patient directed health research, the allowance of direct-to-patient advertising in health care poses huge risks – probably why everybody else except New Zealand doesn’t allow it.

    Not that health 2.0 can’t achieve valuable things, but I personally am skeptical of seeing any big shifts. I am also concerned that an increase in perceieved patient responsibility for healthcare management can easily transition into a blame-the-patient for their condition, and blind people to the structural factors that are leading to this state.

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