Doing Our Best to Blow Your Minds (Emerging Trends in Chronic Disease Care)

Here is my third post in a series of look-backs at the November 2008 Chronic Disease Care conference in San Francisco. (OK, yes, it’s now January 2009 — I’m savoring the experience, not Twittering it!)

The first post was about spreading improvement beyond early adopters, the second was devoted to patient voices, and this will focus on the panel I moderated, Health 2.0: The Power of Participation.

Judging from the audience comments we received after the event, Amy Tenderich of Diabetes Mine, David Williams of PatientsLikeMe, and Jay Parkinson of Hello Health pretty much blew everyone’s minds.

I kicked things off with an overview of the topic.  The bullets:

75% of adults and 95% of teens go online. Half of adults living with a disability or chronic disease go online.

Eight in ten internet users (no matter their health status) look online for health info. E-patients living with a chronic condition are more likely than others to say that online info affects decisions about how to treat an illness,  prompts new questions of a doctor, and changes the way they cope with a chronic condition or manage pain. However, e-patients with a chronic condition are more likely than others to say they felt frustrated by a lack of info or an inability to find what they are looking for.

– But that is just the information stage of internet use. The next stage is participation, which often comes with an upgrade to broadband access.

– Most people under age 40 are fully engaged with social media, but not yet dealing with chronic illness. Most people over 60 are starting to face chronic conditions, but are not participating in social media. (For proof on the social media trends, see Pew Internet’s Usage Over Time spreadsheet.)

– One possible solution: Create spaces for participatory medicine now, worry about full participation later. As Mark Smith said in his opening remarks, transform care within the box, within the confines of where we are and where people living with chronic conditions are.

Then I introduced the three panelists as beacons for what is being done right now to transform care.

Amy Tenderich of Diabetes Mine talked about how the patient voice is emerging online (read more about her role in much of the action on the diabetes front in 2008). Amy let the powerful Diabetes Reloaded video make her point:

David Williams of PatientsLikeMe talked about how the extremely detailed, open-access patient data that people share on the site is printable (for doctor’s visits, for example). He said that data sharing confers status on the site and encourages empathy among participants. The instant mood tracker can even head off a flame war since everyone can see that a cranky comment on a forum is coming from someone who is, at that moment, in a bad mood. However, David pointed out that people may post all manner of extremely personal details, even sexual dysfunction, but are often coy about posting their weight.  (For more on the PatientsLikeMe practice and philosophy, I recommend following their excellent blog, The Value of Openness.)

Jay Parkinson closed out the panel with a bang. Although CHCF didn’t capture it on video, I found a couple of close approximations: Jay’s appearance at Pop!Tech 2008 and his slides (PDF) from the June 2008 HIMSS conference. Jay previewed my follow-up on his blog by posting answers to the most skeptical and most enjoyable questions he has received about Hello Health.

Since a good presentation really is all about the audience, I will share some of the feedback we received in the panel evaluations, from the enthused…

Thought-provoking and innovative.

–  Exciting-created a “crack” in my thinking that I intend to pry open further.

I appreciate how a single person can make a difference in the world of health care.

… to the skeptical…

Hard to consider how this is integrated to current systems and not just a parallel universe.

Would have loved to see an example of the “power of participation” that wasn’t tech-based included in this presentation panel.

Fascinating. I’m glad you did this; it’s the future/my son’s life. I don’t really believe it’s my life/my career; it’s definitely not the answer for the safety net now.

…to the truly repulsed…

I was nauseated at this presentation.


I appreciate this person’s honesty – their world was rocked by the discussion and their perspective is probably more common than we think. Which brings me back to Hunter Gatewood’s wonderful observation that early adopters are like  happy dogs in a pile of sticks. Late adopters are more like a hesitant cat, waiting to see what works, what blows up in dogs’ faces.” Innovation can be exciting, fascinating, and uncomfortable, especially if you’re not ready for it or if you disagree with the changes.


Posted in: key people | net-friendly docs | patient networks | positive patterns





15 Responses to “Doing Our Best to Blow Your Minds (Emerging Trends in Chronic Disease Care)”

  1. SusannahFox says:

    Post: Doing Our Best to Blow Your Minds (Emerging Trends in Chronic Disease Care)

  2. SusannahFox says:

    @patientslikeme @DiabetesMine @jayparkinson just posted about the Nov08 panel in San Francisco

  3. sclarklynn says:

    RT @shwen Great health 2.0 post; RT @SusannahFox Doing Our Best to Blow Your Minds (Emerging Chronic Disease Care Trends)

  4. Ravi Sohal says:

    I’d like to see these Health 2.0 companies succeed, they are creating phenomenal value for patients/consumers. But I think there are significant challenges. Legal, financial and regulatory barriers will hamper their adoption. Healthcare is complex and still confusing to many patients. How will the companies build successful businesses if they can’t monetize and scale?

    Perhaps we are at still the “bleeding edge” and can’t really forecast where all this exciting activity will lead. I do think before Health 2.0 becomes mainstream, we’ll need a breakout company, our “Netscape” if you will, to show entrepreneurs and consumers that Health 2.0 companies can innovate, grow and establish themselves as healthcare leaders.

  5. SusannahFox says:

    Post: Doing Our Best to Blow Your Minds (Emerging Trends in Chronic Disease Care)


    Boy, this is a heck of an endcap to stick on the end of my first year engaged in everything “e”. (I read the white paper the last week of January 2008.)

    That Parkinson PDF did blow my mind. What a potent presentation! I don’t know how real his Kool-Aid is, but I sure get it! And I couldn’t agree more with his point about cutting out middlemen – not to mention his point about using Millennial technology to get the job done.

    His idea of “membership healthcare” somewhat echos Chapter 6 of the White Paper, which talks about high-end membership plans. But he’s orders of magnitude less expensive.

    So, here’s the punchline: what happens in his world when someone like me gets renal cell carcinoma? (Not that 30 year olds would design a system that works fine when you’re 30, or anything.)

  7. Hello
    I have been thinking about how the online voice of patients can contribute to medical education.
    See here:
    Do you have any thoughts about this?
    Anne Marie

  8. Susannah Fox says:

    Ravi, I agree with you and while I’m not sure that company has emerged yet, it’s exciting to watch people trying to get there. Any nominees for companies or individuals to watch?

    Dave, that question was raised at the event, more on the question of diabetes, but I confess I didn’t take good notes on Jay’s answer. Maybe someone else remembers? I’ll ask around.

    Anne Marie, you should check out what Bertalan Mesko and Ted Eytan have written about this – and I’m sure this is just the tip of the iceberg!

  9. SusannahFox says:

    paging @Berci @tedeytan @jenmccabegorman and anyone else to answer a question about medical education 2.0

  10. Ted Eytan says:

    Susannah and Anne-Marie,

    Answering the call – I think it’s great. I alluded to this in my review of Amy Tenderich’s book recently, that physicians should become educated about not just the art, but also the science, by listening to real patients’ experiences.

    Please follow-up on what you learn! Maybe in the future we will track our patients’ health status via RSS feed,


  11. Dave…thanks for the question and for being a fan! We’re trying to change a few things for the better in this crazy industry. However, we can’t solve all problems. We’re definitely not an insurance company, but we’re armed with a few tools to help should you find yourself a member of Hello Health without the high deductible health insurance plans we recommend. First, we make it a point to have a quick discussion with every one of our members as to the best health insurance for them. Most people are stuck in the typical American mindset of pay a heck of a lot upfront so you never have to pay for episodic care. But, as you can see from my latest blog post, this is by far your most expensive option:

    And see my response to Rob. He actually asked almost the same question earlier.
    But to take this a bit further, since we don’t interface with the current 1960’s based health care system, we can’t use our organization tools via the internet to help you once you’re in that frustrating system due to a catastrophic illness.
    Our hands are tied by their inefficiencies.
    Second, if you are saddled with large debt, most people don’t know these can be brokered down. So we’ll put you in touch with resources that can help you with this.
    Third, my aunt loves Bumrungrad!

    Fourth, maybe we hook up with a company that sells Critical Illness Insurance ;)

    But our network is growing bigger and bigger every day. And in a few months, we’re going to open up our platform to doctors and other health professionals all over the country. They can sign up and start selling their services. And just like eBay created a transparent, very low overhead perfect market, well, we’re aiming to do the same for health care. So hopefully in the near future, we’ll be an alternative to the Chrysler-like, backwards system we currently have.
    Hope that helps!

  12. SusannahFox says:

    @ePatientDave Soon! Generations builds on posts re “thermometers” ( and social media (

  13. ePatients / health 2.0 / Emerging Trends in Chronic Disease Care article by S. Fox (Pew Internet Forum)

  14. SusannahFox says:

    Reading audience tweets from #pdf09: thankful for the honesty and that nobody was made physically ill this time (see

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