The Point of Health 2.0. Yes There is One

The (not huge) world of Health 2.0, participatory medicine and ePatients has been fretting itself about a comment Susannah Fox (all hail) elevated into a post called “What’s the Point of Health 2.0”.

Here’s an excerpt from the comment from DarthMed,

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.

And here’s (an excerpt) from another DarthMed made on Fard Jonmar’s blog.

Today we are looking at millions being pumped into health-app start-ups, none of them profitable (or nearly profitable). Billions being pumped into linking electronic health records that ePatientDave showed us can be quite inaccurate anyway (given his GHealth uploading experience, albeit with claims data). So, after a few billion dollars of public and private investment we will have some iPhone apps that “self-informers” will use, a few “vibrant” patient communities of 10,000 patients with only 1,000 patients active (does anyone hear the sound of “disruption” here?), and a vaguely interconnected network of health information space junk.

OR, we legislate that patients should be entitled to receive within 24 hours of demand a one page health summary from their doctor + a copy of test results that they ordered and scripts that they wrote in the past 12 months, and leave it up to the clinics to work out how they deliver on it. Period. Then, lets use the billions left over, and our passion to do more diabetes screens in schools, factories; more mammograms; more childcare for teenage moms so they can go to school/college; more after-school activities to promote fitness and wellbeing at an age where behavior modification can make a big difference.

Unfortunately most Health 2.0 debate revolves around defending new technologies as the solution. And in the process, we’re missing the main point that many preventable social and health problems are just festering away. When technologies are the answer, they take off by themselves (case in point, Google Maps vs Google Health). And I’m sorry, but the HIT horse has been whipped and crying, trying, dying for years.

I’m a little baffled by both of DarthMed’s comments.

Yeah, it’s hard to change behavior. Yeah, it’s a good thing to have more preventative and primary care.

But Health 2.0 communities and tools are clearly helping patients and saving lives here and abroad. And there’s oodles of research from Kate Lorig/David Sobel and lots of others that online (and offline) support groups help patients achieve better outcomes at lower costs.

So is the complaint that spending on building Health 2.0 technologies is crowding out spending that should go to preventative care?

I think that’s the point of DarthMed’s comment on Fard’s piece. If so, that’s totally laughable. Maybe, maybe (even counting Revolutions big dump) a total of $1.5 billion has been spent in recent years building Health 2.0 technologies. We spend $250 Billion a year on cardiac treatments that have very dubious efficacy. Americans spend $5 billion a year on supplements that don’t do anything (according to most scientists). We spend $14 billion a year on a single drug (Lipitor) that many people say is harmful and overprescribed, let alone has sufficient evidence of doing what it says it does (reduce death from cardiovascular disease)

The first DarthMed comment is more crucial. Are we building tools for just already engaged patients? My answer would be that the tools allow patients who had the potential and latent desire to be engaged get involved very easily.  And it’s just not true that patients using Health 2.0 tools/communities would be equally engaged without them. So whether it’s 5% of people or 30%, it’s a real impact for them. Clearly we don’t have all levels of patients as engaged as some of us might like–but more Health 2.0 technologies will be developed to bridge that gap. And if we don’t get to everyone, so what? We’ll get to more people and do more good than giving up.

Weightwatchers has had success showing that easy tools plus communities can lead to behavior change. That’s exactly what Health 2.0 does (combine tools and community support). And yes there are still obese people. That’s life–not everything will work 100%. But Health 2.0 content and communities are clearly being used by millions of people, and I believe that tools/data part is going to follow along.

But I’m most puzzled by DarthMed’s claim that instead of Health 2.0 we should just “legislate that patients should be entitled to receive within 24 hours of demand a one page health summary from their doctor + a copy of test results that they ordered and scripts that they wrote in the past 12 months, and leave it up to the clinics to work out how they deliver on it.”

Err…who does he think is behind that demand? It’s the predominantly Health 2.0 crowd behind www.healthdatarights.org leading that charge. The Health 2.0 technology crowd would love that easy access to data.

How DarthMed sees that as contradictory to Health 2.0 is beyond me. And maybe it’s just intellectually sloppy on DarthMed’s part to talk about billions of public dollars going into linking records, and equating that with Health 2.0. The ARRA/HITECH stimulus dollars are primarily about getting physicians to use electronic clinical workflow tools, and part of that is a demand to make the data able to be presented to patients and to other facilities’ systems. That’s exactly what DarthMed wants (and what the Health 2.0 evangelists of whom I’m barely one) want too.

I might agree with DarthMed that instead of the modest carrot the government is offering ($44K per physician), they could use a much bigger stick (e.g. no data, no pay) to get to the same place, but in the real world of Congressional politics, that isn’t going to happen.

So I’m bemused by DarthMed’s demand that “Health 2.0 – prove yourself quickly or step aside” Health 2.0 is part of a much larger societal process, and it ain’t going anywhere while there are sick people and while technology evolves so that sick people and those who care about them can use it to help themselves.

And if we’re really all for diabetic screening et al for the underserved (and I am) why isn’t DarthMed screaming about the collapse of the health care reform bill? In that as part of his “buyout” Bernie Sanders got $14 billion increased funding for community health centers which do exactly what DarthMed is looking for. Surely the loss of that funding as health care reform dies is far worse than any “waste” on Health 2.0 technologies.

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  1. Actually, although somewhat related, my postings are meant to address two separate issues. I recognize that my comments can be construed as being “antiquated” and cynical – so I will address them here in a more action oriented way:
    1) Health 2.0 must start start demonstrating its relevance to the masses.
    Lets ensure that Health 2.0 does not become about “self-informers” building tools for “self-informers”. Instead, lets challenge ourselves to:
    (A) think about the broad social/healthcare problems that need solving and THEN engineer a solution to fit that problem, rather than think how cool an iPhone app might be (or twitter health key word visualizer – sorry guys, I couldnt help it) and then find the problem it solves; and
    (B) be honest with ourselves about measuring the success of our efforts by our ability to mobilize those outside the “self-informing” space and impact their lives. At the moment we’re just not doing that… for all the communities we have, PHR platforms out there etc. we’re not mobilizing the folks that we should be. We should be honest about that and self critical so we can improve our product and our impact – rather than congratulating ourselves about how disruptive we’re being.
    2) Don’t lets miss the big opportunities
    Let us ensure that the limited resources we have are used wisely to maximize our impact on healthcare. Unfortunately, I don’t believe this is all about money. I wish it were. In fact, more valuable and scarce than money is our intellectual creativity, our innovation and our passion. In the event that our Health 2.0 strategies are not delivering substantial improvements in healthcare for the masses, even after redirecting our efforts, let us have the strength to accept Health 2.0 as a niche “techy” initiative and reinvest our time in making a bigger difference elsewhere.
    Being blunt … if the Health 2.0 “technology” movement is not able to start delivering a really measurable difference in national health outcomes, then lets have the guts to push it aside and free up our brains for different approaches. Interestingly, for all the statistics showing how much more folks are using the internet to look up information and become more informed (thank you Susannah) – isnt anyone worried that in parallel almost none of our national metrics for health seem to be improving? What is the goal here guys – better health outcomes, or more Google searches?

    Matthew – I mean this in the most positive way, I think you’ve done a great job with your conferences – but maybe this means starting to have Health 2.0 “solutions” present more comparative health outcomes data evaluating their impact at the next meeting rather than showcasing another round of startups? After all, Lipitor – a product that has achieved widespread adoption – has had to…

  2. Brian, I don’t doubt for a second that Health 2.0 tools can provide value in managing one’s health and I am certain that web applications are far more suited to the future of health care than the old disconnected computing paradigm.
    However, as valuable as they may be, all these things do is to manage the symptoms of the problem at large. They do not address the underlying root cause.
    When people are under a constant barrage of advertisements for unhealthy foods, practically from birth, and when those unhealthy foods are foolishly subsidized by taxpayer money, it is a bit of a stretch to think that some web app will solve the problem.
    When physical education in schools is where it was fifty years ago and when, in addition to that, most kids spend all their free time in front of a screen, munching on Doritos, because it somehow ties in with football heroes, and looking forward to the day when they can drink Bud Light, the other football staple, there is very little a Web 2.0 cool application can do for them, other than manage the inevitable Diabetes sure to develop after enough Super Bowl indoctrination.
    When we see trends showing that the next generation will be poorer than their parents and less educated, we know that they will have even less time and money to go shopping for arugula and fitness club memberships, no matter how many Web 2.0 applications are available on their iPhone.
    I think what that fellow DarthMed and other folks here were trying to say is that we must address the basic issues if we are to see any meaningful results. Hopefully we won’t need Web 2.0 apps to manage rampant Diabetes in the future.

  3. To me, DarthMed’s comment is mostly uninformed and not worth fretting over.
    Two issues here. First is the definition of Health 2.0, which is far broader than simply consumer health assistance/engagement tools, but extends into Web-based tools that can streamline health care’s transactional processes and help us create more efficiently robust tools. In contrast to some of my colleagues, I’ve argued for a long time that these professional/industrial applications have far more immediate promise to create lower cost and better quality than do the consumer-facing applications. Doubters should take a close look at tools like HealthEdge, My Nurse is On, Wellcentive, or a host of others to get a sense of what’s possible and where we’re headed. (More on this topic in upcoming Health 2.0 Advisors reports.)
    But that’s not to say that consumer-facing H2.0 tools aren’t excellent and getting better. The success of PatientsLikeMe, while with a small, highly motivated population of very sick patients, is undeniable. Organizations like WorldDoc, now Premera BCBS’ patient engagement channel, have done a great job in beginning to penetrate more and more into the mainstream, and produce quantifiable results. Now organizations like Sensei are leveraging mobile technologies to lower the bar to integration into modern, electronic life, and make it easier to produce impacts on behaviors.
    Of course, as health plan innovation leaders like Jerry Reeves, MD have shown, it is unrealistic to expect much impact on the behaviors of mainstream individuals unless strong incentives and disincentives are in place. Even with conditions like diabetes, patients are unlikely to change many of their behaviors without prompting, so sticks and carrots that are tied to choices are part of lifestyle-retraining process are critical. In this realm, take a look at organizations like Chip Behaviors and gBehaviors.
    It’s easy to be dismissive. But for people who are actually in the business of managing health AND financial risk, Health 2.0 tools – both those for consumers and those for health industry professionals – ARE essential elements of an increasingly powerful and effective arsenal that is directly aimed at population and individual care, as well as patient engagement and self-management.

  4. First of all, I want to give credit and thanks to both Matthew and Susannah for publishing, and bringing attention to, DarthMed’s comments. (To DarthMed, thanks also, but please let us know who you are. I’m really skeptical of pseudonomic commentary, and think it shouldn’t be done unless the author really fears his or her comments may create personal danger. Tell us your real name, please.)
    There is, in fact, something of a backlash against Health 2.0 out there, and some of the criticism is justified. This is something I think about a great deal, and therefore want to offer my own thoughts about it.
    When I first came to Health 2.0 and joined ranks with folks who were leading this charge, it was because I was so thoroughly discouraged by the realm of health IT for physicians and hospitals, and disappointed with both the vendors of EHR technology and most of their customers. I saw what was happening on the consumer and patient side of health IT as leapfrogging over the tired, staid, and expensive proprietary client-server apps that were about the only thing in that marketplace. Health 2.0 was an extension of Web 2.0, which meant that it was STARTING from a point out ahead of the traditional health IT industry. Innovation was welcome, and entrepreneurs given a pat on the back. It was participatory, in the sense that the patients’ rights and capabilities to engage in their own health and health care decisions was a given. And, although at times I felt that because I am a physician I was unwelcome, I understood that social groups need boundaries and you have to earn your stripes is you come in from the “outside.” Hey, I even welcomed some of that suspicion, as it assured me that this was a new, vibrant, and independent place where people were put first, not professionals.
    However, as I’ve recently written with Brian Klepper in “EHRs for a Small Planet,” there is a problem with Health 2.0 just as there is a problem with the way we’ve approached EHR technology for doctors and hospitals.
    And that is that we’ve been seeking solutions from IT instead of from people.
    We’ve been too little concerned with what happens in our local communities. “Think globally, act locally,” could be applied to the use of health IT by local groups as a way of re-invigorating our innate-problem solving abilities, helping one person at a time if necessary, but also building community resources for empowerment from the ground up.
    What DarthMed is saying is partly true. “…(T)he 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.” Only partly true because even “low-tech, unsexy” and public health-oriented solutions to our health problems could benefit from the use of health IT, if that health IT is affordable, easy-to-use, and based on the resources people already have available to them. Instead of asking “what would be possible if everyone had the IT resources of Kaiser or Mayo, or some expensive state RHIO?” we should be asking “what is possible given the IT resources already available in the community we live in?”
    There is something wonderful about the crowd on the net, but there is also something real, practical, and just as wonderful about our actual neighbors. There is something very confused and troubling going on when physicians don’t know how many patients with hypertension there are in their practices, don’t know how many of those patients are being treated appropriately, at what cost, and by whom else in the health system. But there is just as much wrong when a city or town council doesn’t understand what the priority risks are for their community, the kinds of solutions that might address those risks, and lacks any understanding of the relationship between continuity of care among providers and the rates of dis-ease and high cost care their citizens must face.
    Due to my work, I travel on airplanes a lot. I’ve noticed that whenever there are soldiers on the plane, the pilot makes an announcement something like this. “Folks, we have a group of fighting men and women on our plane today, and we’re all very proud of the job they do defending our lives and liberties. Let’s show them how much we respect them by letting them get off the plane first, and by giving them a big round of applause.”
    This is fine. I clap, too. But I fantasize an alternative that would go something like this. Pilot: “Ladies and gentlemen, we have a group of people on board who have lost 10 pounds of excess body weight during the last six months through eating right and exercising daily. We also have a few people on board who have successfully quit smoking cigarettes. Let’s show them how proud we are of their healthy lifestyle choices by letting them get off the plane first, and offering them a big round of applause.”
    I clap loudly.
    Kind regards, DCK

  5. Weight Watchers is a good comparison in a lot of ways. It’s social; it tries to use insights into human psychology to change behavior; it shows modest average results and in a minority of users makes a major impact; it is generally not incented so only those already motivated to actively manage the condition participate; and despite the modest results it is making no appreciable impact on population health (by itself) nor should we ever expect it to.
    Health 2.0 is generally about the management of chronic disease. As such, it gets to people after they are already sick, so of course it doesn’t reduce the incidence of disease. Yes, it can help someone minimize the complications from a disease and thus reduce medical utilization.
    It can also improve quality of life. We had a child born two months premature a couple years ago, and used Caringbridge to share the story with friends and family as it developed, and get feedback. It didn’t make a difference for our newborn’s health, but it did make us feel better and it was a much more efficient way to share information and make everyone feel as informed as they wanted to be. The whole extended family bonded a bit.
    There is a dimension of Health 2.0 around wellness as well. Call it Wellness 2.0. I would argue that a NY Times article on Michael Pollan’s latest rules for eating, which gets put on the “most emailed” list and then readers comment with their own insights can be regarded as a form of Wellness 2.0. Certainly any place online where people discuss tips on health and wellness counts, and so do tools to predict health risk, and things like tracking tools for recording pedometer or scale data.
    But as others noted, we have a culture problem that overwhelms what Health 2.0 or Wellness 2.0 can provide in terms of health outcomes. These new tools make it a little bit easier to get informed and to share information with others. Ideally, they will make it a lot easier to get informed in as much detail as you need, with actionable steps laid out for you based on the best available evidence and tailored to your personal characteristics. Genomic health is coming, and I believe Psychological health (that is, the improved use of findings on motivation, goal-achievement, barriers to change, temptation, etc.) will also get incorporated into Health 2.0 and Wellness 2.0. But even then, you need to step into the tent to see the show. And even then, there will be powerful cultural forces (mostly related to diet and lack of physical activity) that mitigate the effectiveness of these tools.
    So, legislation is critical. Tax soda. Tax refined sugars and flour. Re-zone urban and suburban areas so that dense, mixed-used development is not illegal or is even encouraged (in other words, make walking-friendly cities and towns possible again). Also keep building better and stickier Health 2.0 tools, but realize their impact will be at the margins, and in the best case will be ampliative of wider social changes of attitude.

  6. As long as the congress and the society are deeply divided on the the very issue of health reform, much less what form it should be in, there is unlikelihood of any progress on this front.

  7. The future of Health 2.0 will be decided by the market. I read on this very site regularly about unrealistic expectations of various gadgets/technologies. Moreover, it is also regularly overlooked that patients may use knowledge from newer information sources to their explicit disadvantage – for instance, patients “recognizing” their nonspecific symptoms as part of an ongoing disease process – multiple sclerosis, ALS, Lyme … and when the crazies (e.g. chronic Lyme disease “requiring” longterm ABx treatment) or the comercially interested (e.g. neurosurgeons promoting posterior fossa decompression to “cure” headaches postulated to be from Chiari I malformation but in reality almost always chronic migraines or other primary headaches) educate the informed patients, the misinformation becomes method.
    The obesity/DM 2 catastrophe is looming, or better, we (in healthcare) are already seeing the beginning flood. That needs an enormous national effort that combines campaign for cultural change (against the sedentary life style and unhealthy eating) with financial incentives, positive and negative (no more corn subsidies, subsidize fresh produce, rebate for insured loosing weight or being normal weight, promoting walkable neighborhoods etc.). Technical gadgets will be only of very limited use. And diabetes screening is a part of firefghting, not arson protection.

  8. It’s a common analytical problem. There is high growth rate of premium and many disease. So programs like weight watchers might be effective, just that instead of decreasing obesity rate it might be slowing down the growth in obesity rate. That is construed as being ineffective which is not necessarily true.
    One could empathise with Darthmed’s frustration. Yet, if Health 2.0 project can break even then there is nothing wrong. Essentially, the $2.5 trillion dollar annual bill is for 15,000+ diseases. There will be no one cure for it either. It’s not going to lend itself to one liner shibboleths and dogma. We all can be correct at same time.

  9. The DarthMed fellow is 100% correct. The various Health 2.0 tools are obviously helping individuals, that are both capable and interested, in managing their health. However, just like Weight Watchers helps individuals reduce their weight, but hasn’t put a dent in the obesity rates, Health 2.0 is not contributing to population health.
    Basically, you are looking at individual benefits and Darth is looking at population benefits.
    Regarding investment in Health 2.0 ventures, that is up to the venture capital world. Those folks are rarely motivated by benefits to populations. If the ROI is there, they will invest. If the product does good to the customer, the investment qualifies as socially responsible. This is private money and it’s no different than investing in Weight Watchers.
    Health 2.0 if and when it matures, will be to health care as online banking is to financial management. It will make it easier for consumers to manage their health, but just like online banking does not reduce rates of poverty and bankruptcies and debt, Health 2.0 tools will not reduce disease, obesity and other health problems.
    Changing behavior requires different tools. It requires Public Health tools. They are not as fancy and as sexy as a slick Ajax powered Health 2.0 website, and there is no instant gratification. It may take a generation or two before you see any results and it must start with the children. Most adults today are the desert generation when it comes to healthy lifestyles.
    Now to the data (I love the data subject). There are two kinds of data, just like there are two kinds of health interventions: individual and population.
    The individual data is only valuable to the patient and his care team. That one piece of paper summary that DarthMed mentions is good enough for individual needs and the requirement to provide it will become law in a week as part of meaningful use.
    The other data, the massive fluidity of all data for all patients, is useful for population management. It could be useful for a myriad of things that are beneficial to society as a whole and public health in particular. It could also prove to be a gold mine to less noble interests directly detrimental to the individual. It’s going to be a very delicate balance.

  10. There is not enough bang for the buck. Furthermore, it is someone else’s buck.