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From Couch Potato to Quantified Self: This Journey Must be Defined and Encouraged

June 13, 2011

I’ve been interested in the growing population of folks who self-track objective data for health purposes.  The phenomenon is referred to either as personal informatics or the Quantified Self.  Both concepts have a following and both are intimately tied into the value of connected health.  Connected Health adds value in two fundamental ways:  self–care and just-in-time care.  In both cases, objective, quantified data is a critical piece of success.   For those individuals who are even a bit motivated to improve their health, quantified, objective information leads to insights that prompt behavior change.

I had a chance the other day to catch up with Gary Wolf, who is one of the founders of Quantifiedself.com, a frequent contributor to the New York Times Sunday Magazine and a Contributing Editor at Wired.  We had an inspiring discussion about the intersections of Quantified Self and Connected Health.

Gary was a bit out of breath, having just wrapped up the first Quantified Self Conference at the end of May in Mountain View, CA.  Gary was very excited about the conference and its impact.  More than 100 projects were presented, 60 talks were given and more than 25% of participants presented.  When I asked him what was ‘the hook,’ i.e. why is QS taking off so fast, his response was that, “people are reaching the realization/hope that personal data have personal meaning.”  We both agree that the growing interesting in quantification is bringing us beyond the ‘data is geeky’ stage to an era where there is a real movement around the collection of data and the use of that data to gain insight about health and affect behavior change.

Sadly, our experience dealing with real-world patients at the Center for Connected Health is varied.  One example is our Diabetes Connect program which until recently involved a device that measured glucomenter readings and moved them over an analog phone line to our database. For a disappointingly high fraction of our patients, the step of plugging in a device to the glucometer, to the phone line and then pushing a single button to upload glucose readings was more work than they were willing to do.  Even the opportunity to see their glucose readings quantified and shared with their health care provider was not enough motivation for some individuals.  This experience calls into mind several interesting hypotheses re: the gulf between the Quantified Selfers and our ‘average Joe’ patients.

One explanation could be that that managing chronic disease, especially diabetes, can be complex and too overwhelming for someone to take on anything more.

A second explanation could be that it is the health care provider’s conscious or unconscious doing by failing to create the expectation that patients should take charge of their health.  We have given patients the message that once you have a diagnosis, it’s too complex to self-manage.  Our insurance plans and politicians have a hand in this too by sending out the message that sick people are victims and health care is an entitlement.

A third explanation could be that the technologies are only mature enough to attract an early adopter crowd.  As Gary noted, the ‘geeky’ users are very forgiving of technical challenges and rise above them, often without thinking twice.  However, the average health consumer might struggle with quantification, as systems are possibly too complex.

It is important to know more about these (and other) roadblocks because the power of quantification in chronic disease management is evident. It is one of the primary strategies we’ll need to lower the services burden on an already beleaguered primary care work force.

I have a good friend, a former senior executive at Partners HealthCare, who told me he was ‘put on a program by my insurer. I have to walk 10,000 steps and interact with a health coach once a week about my progress.’  Next time I saw him, he had an inexpensive pedometer on his belt.  No other technology was employed.  But he was just one week into the program and by 9 am he’d already done his 10,000 steps for the day.  He did so by taking his first few conference calls while out on a walk.

It was after this experience that I decided that we need to turn as many of our patients as possible into quantified selfers.

When I asked Gary about this challenge, he was thoughtful in his response.  He spoke of segmenting folks beyond the simple binary classification of quantified selfers and couch potatoes.  He suggested that as we learned about the various segments, we’d glean corresponding strategies to inspire them to quantify and use their self-generated data to improve their health.

We also talked about the willingness of health care providers to embrace data from self-quantifiers and we both agreed that this needs to improve.  He alluded to a component of the recent QS conference where the topic of discussion was ‘quant-friendly docs.’  While I know we have a lot of distance to travel here, I am encouraged on two levels.  One is that doctors are beginning to realize how much data their patients generate when out of the office and the value that data can bring to healthcare decision making.  The second is that we have software solutions (decision support) that can plow through reams of banal, normal data and pull out those data points that are worthy of a highly trained professional’s analysis.  I’m confident this problem will be overcome quicker than the passivity that I see in chronically ill individuals.

What’s your feeling?  Should we convert as many patients as possible into quantified selfers?  How should we do it?

26 Comments leave one →
  1. June 13, 2011 3:55 pm

    Thank you for this detailed, thoughtful post! I think your questions are part of the solution. Many people think of health care as a recipe book, and effective treatment means matching a diagnosis with a cure. But of course actual experience teaches us that often this is not the case. Instead of a recipe book, health is an ongoing investigation of practical ideas under changing conditions. At the Quantified Self, we are trying to find out (and help invent) a better context for this investigation. Part of this involves “tuning up” our dialog with doctors and other health professionals. When we ask questions together, we’re doing the right thing. I really appreciate your taking an interest and giving this so much of your attention.
    -Gary Wolf

    • June 13, 2011 5:37 pm

      I appreciate your insights and hope we can bind a group of dedicated, enthusiastic individuals together to conquer this challenge!

  2. June 13, 2011 11:38 pm

    Thank you for this interesting post.

    We should start by giving everyone unlimited access to their medical data. As a cardiac patient living with an implantable cardioverter defibrillator (ICD), I do not have electronic access to the data collected by my device. This data is gathered via remote monitoring and made available to clinicians and the manufacturer of the device, but not to me, the person who originates it.

    Sadly, today’s healthcare environment is such that whenever I bring this up, I get the question: “But why would you want access?” And I am getting tired of having to explain that it’s just wrong to keep patients from data collected by THEIR device about THEIR heart. Plus, real-time access to information such as atrial and ventricular arrhythmias, fluid accumulation in the lungs, or device malfunction would invaluable for people living with heart failure and other types of heart disease. And perhaps even lead to improved outcomes and better quality of life.

    I attended the Quantified Self conference in Mountain View last month and for as long as Mr. Wolf and others continue to inspire us to seek self-knowledge through numbers, there’s hope for all other patients to become Quantified Selfers and change healthcare for the better. At least I hope so.

    Hugo Campos
    ICD User Group

    • June 14, 2011 4:34 pm

      this is indeed an important step. mixing data from traditional medical sources with self-derived data could be very powerful

  3. June 14, 2011 3:39 am

    Great post – and timely in light of two recent posts I saw. Both highlight the sizable disconnect between those of us that have learned to navigate technology pretty well (warts and all) – and millions of others where it does not intersect their life in the same way. Before we make a ton of assumptions on who is smart (and therefore who is dumb) these two posts (I hope) might serve to highlight that it’s the wrong question. The fact is – computer UI/UX (user interface / user experience) is still really early in it’s evolution – and much of it is still really just plain awful. The good news is – it’s getting better – and with much greater speed – but it’s important to recognize that it’s still early, evolving.

    Interesting to note that in both of these cases – the underlying technology was Apple – which has long been thought of as the pinnacle of user design/user experience. This isn’t meant to slight Apple in any way – just highlight that if any portion of the population has trouble using the most intuitive, easy to use interface – we still have a ways to go.

    YouTube “Do You Hear a Click?” – Rita and Frank try to take a still photo to email to friends for Frank’s 84th Birthday on their new Mac: http://t.co/aYQz7jB

    Mark Goldenson (CEO of Breatkthrough.com) post titled: “Our poor moms – how technology is still too hard”: http://bit.ly/lMxZgI

  4. Sam permalink
    June 14, 2011 3:39 am

    Really? This is what you think people should spend our time on? In the rest of the country over 25% of people go without health insurance each year. Childhood obesity is skyrocking and the rate of homelessness amongst kids is doubling in the suburbs.

    Lack of primary care is a huge problem in rural areas and inner cities..

    If it was a “lack of data” that accounted for these problems perhaps I would join with the healthy wealthy who are buying fit bits and putting new apps on their smart phones and running around acting like I am part of the borg.

  5. June 14, 2011 11:03 am

    @Sam,

    Good point, but try to keep an open mind. A recent US/EU collaborative report (* referenced below) suggests that the tsunami of obesity, diabetes and poor general health we face today is a result of “passive and unintended consequences of modernization”. It demonstrates that advancing health care delivery alone has not impacted health outcomes effectively and proposes using data intensive crowd-based evidence to support proactive policy modeling and to educate and nudge citizens to achieve desired health behaviors.

    It puts forth the notion of light instrumentation of crowds to enable participative sensing, nudging through persuasive technologies and serious gaming to sustain individual health behavior change.

    Of course this might not solve the problem of homelessness among kids, but that’s how a “lack of data” may account for childhood obesity for example. Access to personal data can help with engagement and engagement has the potential to nudge lifestyles toward better health outcomes.

    I think it’s worth a shot.

    ——————–
    (*) Nudging lifestyles for better health outcomes: Crowdsourced data and persuasive technologies for behavioral change. PINIEWSKI Brigitte, CODAGNONE Cristiano, OSIMO David.

    http://publications.jrc.ec.europa.eu/repository/handle/111111111/16294

    ——————–

    • June 14, 2011 4:26 pm

      interesting perspective. While modernization bears some of the blame, I guess i feel that individuals are responsible to a degree in their own outcomes as well.

  6. June 14, 2011 2:35 pm

    Sam — I sympathize with your point, and agree that the lack of good, affordable health care for all Americans is appalling. I also do not like the notion of “nudging” people to good behavior habits, because it feel like we’re insulting those people. Perhaps those people are doing everything they reasonably can, given their circumstances, their resources and other demands on their time. We should be offering assistance, not judgements.

    However, I think you’re missing an important point about the spirit of the Quantified Self. The underlying purpose is to enable and empower people to improve their own lives in whatever ways they see fit. Yes, there are some for whom this is a hobby, something they can indulge in because they have the time, money, expertise to do so. That’s often true of pioneers, especially in technology. But, these pioneering ideas could have broad benefits. Even those with access to good healthcare services will spend 99.9% of their lives outside of healthcare — only we (and our families) can take charge of our health, as professional doctors and nurses are simply not there. The tools and ideas being developed through Quantified Self pioneers may end up being useful for the rest of us.

  7. June 15, 2011 2:57 pm

    Hi,
    My name is Fred Trotter and I lead the session on the Direct project from which the session on “Quant-Friendly Docs” was born.

    We had two docs who showed up for the session which was good, because it became quickly obvious that being a “Doctor friendly Quantt” was equally important.

    Hopefully once we have calmed down somewhat, we will be able to coordinate with the e-patient and QS community to create a resource that talks about how the Quantt-Doctor relationship should work optimally.

    In the meantime, feel free to join our discussion group: http://groups.google.com/group/quantified-doctors

  8. June 15, 2011 5:29 pm

    I am delighted to meet you, Fred. Thanks for your thoughts. i agree that the alignment you speak of is optimal. Hope we at the Center for Connected Health can help.

  9. June 15, 2011 8:37 pm

    A relatively new medical journal — SelfCare: The journal of consumer-led health — just published my review/opinion piece on “The Self-Quantification Movement — Implications for Health Care Professionals”.

    They’re actively asking for commentary from the medical profession, as you can see in the accompanying Editor’s Note.

    You can find this online here: http://www.selfcarejournal.com/

  10. June 21, 2011 11:21 am

    Granted that motivating patients to follow prescribed anything may be difficult. However, presntations and published literature offer a more positive response than your post. While human factors may be overlooked by technology enthusiasts, it is the rapport with caregivers and an understanding of therapeutic regimines that improve outcomes and compliance which is so vital. Furthermore the vitality of our healthcare delivery system’s ecomonic base demands finding improved human methods to reduce the group of non adopters to a minimum.

    • June 21, 2011 11:26 am

      Thank you, JIm for your thoughts. I believe our quest should be to embed as many of those ‘human factors’ into our technologies as we can. The answer simply can’t be more human contact as there aren’t enough care providers to go around. There are good examples of using technology to provide caring, engaging service, so it can be done.

  11. June 22, 2011 7:40 am

    The Robert Wood Foundation has been promoting the capture of Observations of Daily Living (ODLs) for some time now. What constitutes an ODL? Certainly tracking the number of steps one takes on a daily basis or capturing glucose levels qualifies. Our experience has been that capturing ODL data such as the number of minutes (or hours) spent watching TV or the amount of time spent with one’s children (on not) can be used to show correlations to weight problems, levels of stress, etc. The key is to express this captured data in graphical form to show trends which provide “visual clues” to participants. This trending data can then be used to support “coachable moments” especially when cross referenced to traditional clinical data (again in graphical form) such as weight, blood pressure, glucose levels, etc. Cause and affect. Ease of use is paramount but education as the availability of such tools and how to use them is also required. Delighted to see that there is a movement afoot to promote such tools.

  12. June 22, 2011 7:58 am

    The ODLs effort at the Foundation is admirable. i also agree that visualization is a powerful component of engagement and motivation (for some individuals). The hurdle to overcome, we find, is the accurate collection of these ODLs with little or no extra effort on the part of the participant.

    • June 22, 2011 8:16 am

      Absolutely. Two methods (1) Biometric Capture Bluetooth devices – when a participant sits next to their computer the data is automatically uploaded (2) Cellphones (not smart phones) – participant gets a call from their portal, asks for ODL(s) , numberic values only (“on a scale from 1 to 10, how stressed are you today?”), keys value, end call, data is added to ODL capture data base and available for review. Keep it simple, then maybe participants will comply. We are gathering data, will know more in a few months.

  13. June 22, 2011 9:02 pm

    Excellent post & discussion!
    The exponential growth rate of technology will allow us to capture every aspect of our life and convert the data into real time/ point of decision actionable insight. The capture of this data will require very little proactive action on our part since sensors will be literally everywhere. The real challenge will not be the technology but the massive cultural shift that will be required to ‘allow’ IT to be so pervasive and invasive. People have adapted rapidly and become used to the coveniences that have been brought forward by the digitization of our world. Healthcare will simply be the next industry to enjoy the benefits!

  14. June 22, 2011 9:30 pm

    thanks for your insights, Paulo

  15. September 1, 2011 3:19 pm

    Well that depends. What is the motivation to try to encourage constituents to see themselves as quantified? It only makes sense if we give constituents the tools to produce, share, and access their own data. We can’t expect people to appreciate their quantified selves if we expect them to separate themselves from their data and hand it off to an culturally valued expert. We first have to change cultural perceptions of “who’s in charge” in health management; to do so we must create systems where constituents can influence their data and normalizing that communication process instead of relying on the sacred 7 symptomatic complaint and expert transcribing my chart method. Quantified selves means perception of holism: we are, we own, we have a degree of say over that self. I believe the question is not “should we influence constituents to take ownership over their quantified selves,” but “what communication systems have we designed that discourage constituent ownership over their healthy self?” I believe that chart management is the key, and constituent perception over health changes when we start allowing them to do more than manage, but contribute, to their own health record.

    Dena Rosko, MA-ComL
    denarosko[dot]com
    textandpixels[dot]com

  16. September 1, 2011 5:09 pm

    This is an interesting view and as I understand it, I believe you are bringing up an important insight. I am fully in support of giving folks complete ownership of their information. Maybe one of the reasons we don’t see much interest in some populations is that, societally, we’ve given them the message that they are passive participants in their healthcare. Is that what you mean by “communications systems designed that discourage constituent ownership”? I don’t believe it is as simple as system design. We see plenty of folks who just don’t engage. My point was that if we could somehow instill in them the eagerness to self track that I see in the quantified sellers, they would begin to engage and be healthier as a result.

  17. October 9, 2011 11:12 am

    I just discovered your blog after reading your commentary in the September 2011 HealthcareITNews. I immediately found your site on line and read everything. I particularly enjoyed this post – From Couch Potato to Quantified Self.

    The comments to your blog posts are great because they capture the array of challenges that accompany every potential solution for improving healthcare.

    As rich with opportunity as your cHealth strategies are, they seem to run into the same old obstacles – physician and patient adoption, how to pay for the extra cost, how to take the technology to the next level.

    Since we are getting all ideas – even the ugly ones on the table – why don’t we talk about strategies to economically incentivize the patients? Although we’d like to think that just being healthy is enough of an incentive, it clearly is not for many people with chronic disease. It seems like giving these patients a financial incentive for tracking their data and sending it to their provider should at least be considered as a way to jump start the process.

    Keep up the great and inspiring work.

  18. October 9, 2011 8:43 pm

    thanks for your interest and your words of encouragement. i am very much in favor of developing systems that create incentives (and penalties) for consumers in the area of healthy behaviors

Trackbacks

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