While interesting reading, to me, the piece seems flawed from two perspectives.  First, the article is highly focused on an acute care view.  Dr. Detsky notes that he practices in an inpatient setting and the piece reflects this bias.  Secondly, it is truly difficult to really know what patients want when you are in the role of the doctor.  I can fully say that when I take on the role of patient, I can’t really do so in a pure way, completely divorcing myself from my role as a doctor. I don’t think its possible for a physician to fully embrace the role of patient, possessing the insights into health and disease that years of clinician training and medical practice.  So, despite his best efforts, I don’t think that Dr. Detsky can tell us what patients really want.

It’s not that I think the JAMA article is off-point but rather incomplete.  There is so much more to health care than what goes on in the acute-care/inpatient setting. When we are sick enough to need an inpatient bed, most of us want to be cared for in the most profound way.  This perspective on care doesn’t translate well to the two other domains of health care that I routinely think about – namely health/wellness and chronic illness.

Focusing on health/wellness and chronic illness, I’m going to risk falling into the same trap I’ve criticized Dr. Detsky for: I’m going to take a stab at what I think patients want. However, using the blog format for this communication allows me to take advantage of social media allowing for feedback, especially from those of you who are not doctors!  So, please help me with this.  If we hit a home run, the output from this dialogue will be fodder for our Symposium and for other writing projects I’m involved with.

In the realm of fitness and wellness, I believe:

• We want to live forever in a healthy, painless state.
• We want our health care professionals to take us seriously when we engage them in dialogue around alternative approaches to diet, exercise, nutrition, sleep and longevity.
• We want integration of our fitness/wellness world into our healthcare world. Right now they are silos that don’t talk to each other.
• We want to engage our healthcare professionals in conversations around all of the data we’re collecting about ourselves with consumer-level devices (and not have those data dismissed as unimportant).

In the realm of chronic illness:

• We want low-friction solutions to help us cope.
• We don’t want to be told we’re sick and we don’t want to be treated as sick.
• We don’t want to face the future consequences of our chronic (often symptomless) illnesses.
• We want to feel as if we can dig ourselves out of the chronic illness abyss – to feel hopeful.

In general:

• We want good service.  A person to answer the phone.  A kind voice.  A caring and supportive person.
• We want to be treated with respect.
• We don’t want to spend time in the doctor’s office or hospital.
• We want simple, consumer-friendly processes for accomplishing tasks like scheduling an appointment or refilling a prescription.
• We want access to professional advice (Dr. Detsky and I align on this one).
• We want transparency of process – ‘a play book on how to get things done.’
• We want a way to take charge of coordinating our care without complex, repetitive and obtuse processes.

For centuries, patients have put up with tremendous inconvenience and friction to move themselves through the healthcare system.  They’ve put up with it because the only way to get care is to visit the doctor and the system is constructed to make the doctor’s work life as productive as possible, not to make it easy for patients.  I expect that to change in the coming years.  We’ll see more patient empowerment,  more instances where consumers can make their own health care decisions without  a physician and more opportunities to streamline care delivery making it simpler and more patient-friendly.

What do you think?  Did I get it right? What’s missing? Let me know.

In a fee-for-service world, physicians are both the fountain of relevant knowledge and the source of all revenue.  So we have built our workflows, systems and processes around their comfort and success.  As physicians succeed, so does the rest of the healthcare juggernaut.  I know other industries fall victim to these kind of MC Escher-like business models, but it seems particularly acute in healthcare.

My belief is that this paradox makes our industry highly susceptible to under-imagining what real innovation could look like.  We have some pretty deep blinders on, it seems.  One of my favorite Steve Jobs legends is that when asked about the consumer research that led to the development of the iPad, he quipped, “We don’t expect consumers to be able to tell us what they don’t realize they need.” [I am paraphrasing, but this is reasonably accurate.]

As we trot out our prized innovators in healthcare, we don’t seem to hear that kind of talk.  We hear about improved ‘door to balloon time’ in the care of acute MI, about using Lean to improve hospital work flow and supply chain management, about programs to encourage more generic drug prescribing and about decision support systems that help doctors avoid wrong dosing or prescribing medications that negatively interact with one another.  Indeed these are innovations, but they are all innovations that Christensen would classically call incremental.

At the Center for Connected Health we purport to be patient-centered in our approach.  I think we do a decent job at this. But try as we might, it’s hard to get at two things. One is a true patient perspective that is imaginative, articulate and consistent.

I’m making a pitch to our Symposium organizers that this year we devote a good deal of space on the program to drawing out the patient perspective from multiple angles.  We’ll see how persuasive I am.

The second challenge is finding patient advocates who do not feel intimidated in front of an audience.  We also have trouble finding advocates that are ‘pure’, i.e., folks simply disguised as patient advocates but really championing a different cause.  I have to give thanks to the tireless work of folks like Dave DeBronkart and Sarah Krug who are tireless advocates and my friends at the Society for Participatory Medicine. But we need more like them.

In the meantime, consider with me how we as innovators should best create the programs, technologies and services that chronically ill patients don’t know they want or need yet. How do we develop devices to motivate and monitor activity for the fitness buffs who think they are content with a good pair of running shoes and a gym membership? How important is the patient perspective in the development of connected health programs and services?

In my next post, I’ll share with you my impressions of an article that appeared in JAMA last  month about patient perspective.

There has been a lot of hand-wringing and discussion about how to fix this problem.  There is even a new series of buzzwords entering our lexicon (ACO, patient-centered medical home, bundled payments, shared savings, bending the cost curve – this is an incomplete list).  This last one amuses me – bending the cost curve.  Try as we might, those of us in organized healthcare can’t come up with ways to really cut costs.  We proudly talk about strategies that may keep costs from going up as quickly.  The goal of keeping medical inflation at the same rate as general inflation is often mentioned.  The trouble is, we’re starting out spending so much more than any of our developed world comparators. Yet, can we claim that the quality of care we deliver is as good as other nations that spend considerably less?  So is ‘bending’ the cost curve really enough?

One reason we have so much trouble is that so much of our costs are tied up in labor (56% according to one recent study).  As someone recently quipped, “in healthcare, a dollar saved is a dollar of someone’s wages lost” – or at least 56 cents of wage lost. Also, as classically described by Christensen in The Innovators Dilemma, most of our decisions are made either by physicians or in consultation with physicians. So many times over the years, I’ve witnessed interesting ideas brought forth and dismissed out of hand by physician leaders. “Our patients would never go for that….”or ”That would not work clinically,” etc.  Of course clinical judgment plays an important role in healthcare delivery and the perspective that a physician brings is valuable.  But when we’re talking about efforts to really manage costs, we have a conflict of interest. Can decision-making physicians really look objectively at solutions that are presented which might result in less demand for our services and may affect our income? After all, we’re only human.

Last week, I was privileged to be on a plenary panel at the 3d annual mHealth Summit in Washington. My predecessor on the panel is the President of Apollo Hospitals in India. He gave an impassioned speech (effective too, laced with humor and using his booming voice and stage presence) declaring that mHealth would go nowhere unless doctors were compelled to adopt it.

Our Center stands on the border between two very different worlds.

In one world, our healthcare delivery system is facing the hurdles alluded to above. Partners, the delivery system we work for does its best to move 7000 physicians and a large hospital system to a new reimbursement model and, consequently, a new care model.  It’s going slowly, but we’re viewed as leaders and we’ve done amazing things to try to get us there.

In our industry, there is more talk than ever about the potential of connected health, but not too much implementation just yet. In fact, the predominant strategy floating around involves hiring more staffing for better care coordination and improved quality.  Wait, didn’t I say that 56% of costs are labor?  So we’re adding more labor?

In the other world our Center lives in, consumers are moving to take charge of their own health, adopting connected health as either a personal fitness aid, or as part of an employee benefit offering (e.g., the work that Healthrageous is doing).  This too is in its early stages, but as I watch it unfold, I’m struck by the possibility that the health care cost crisis may be solved by innovation that occurs outside of the traditional healthcare delivery system.

One example that is interesting is retail clinics. They are flourishing now.  They are taking business away from our primary care physicians. No one notices because they are all so busy, but as retail clinics grow, at some point we’ll notice.  Another trend to follow is how Walmart re-invents primary care.  It’s early and speculative, but I’ll bet a week’s pay that this model will include some component of home monitoring and surely lots of opportunity for patient/consumer self-care.

At our Connected Health Symposium last month, we held a lunch for several companies who are ‘non-traditional’ entrants into connected health. We had participation from a beverage company, a consumer products company, and a large retailer to name a few.  Why are they all interested in connected health?  I’m just learning, but I’m sure if they smell a business opportunity it is unlikely to involve mainstream healthcare.

So keep an eye peeled for something to happen.  Some routine service that you think you must see your doctor for will be delivered online or in some much more convenient way.  God knows, today’s mainstream healthcare delivery is about as consumer unfriendly as you can get. So once something that competes and is convenient, a true sea change should be upon us.

What do you think? Can you conceive some truly disruptive concepts that will take business away from mainstream healthcare delivery and still deliver quality care?

In preparation for the meeting, I reflected back on the days when my colleague Doug McClure, now CTO at Healthreageous, and I envisioned what would be needed to bring connected health mainstream.  One area that has been troublesome has been the ease with which we can extract data from various home-monitoring sensors (blood pressure cuffs, pedometers, glucometers and the like) and get it into the cloud for analysis and utility.  At this point a variety of strategies exist, from plugging a device into your computer (via USB port) to the wireless home hub, to embedded mobile chips in the sensors themselves.  This cacophony suggests an integration nightmare.  Long before we founded Healthrageous, Doug and I thought device connectivity would give us an edge.

Fast forward 5 years and its hard to find a sensor that does not have some sort of wireless connectivity.  Many of them have connectivity integrated through a smartphone or home hub directly to the company’s website.

Device connectivity has largely been conquered.  So is that the market?  Well, there are countless sensors that you can buy and easily start tracking your own physiologic info and learning from the experience.  It is this phenomenon that was the genesis of the Quantified Self movement, now with meet-ups in many cities world wide.  It seems like selling products to this burgeoning market of self-tracking zealots might make sense.

The challenge is, it appears to be about 10% of the population.  Lots and lots of devices chasing a small and finite population…..

Then there is the deluge of smartphone apps.  More than 10,000 of them last count.  So are apps the answer? Well not exactly. It seems that 26% of the time apps are opened zero or one time.  Further, 75% of the time folks stop opening them at about the 10^th try.  That is kind of discouraging. It seems that apps alone are not the answer.

Maybe there is some way to marry these two concepts. We know that data=self entry is a particularly weak strategy as it is subject to social desirability bias as a confounder. We all want to look good and healthy so we’re prone to report those readings that support this and somehow not report those readings that do not.

Healthrageous has taken the path of focusing on dynamic personalization.  With all of the data being collected about you, they are able to craft a uniquely motivational program of messaging for you. And it’s working.  Their early results show positive improvement in both blood pressure and activity monitoring.

Likewise Runkeeper is doing some interesting integrations with devices as is Gravity Eight.

These are just a few of the companies that now take advantage of the near ubiquitous tracking data that can be derived from consumer-level sensors, but seek to surround those data with strategies to draw the consumer in and create the opportunity for sustained behavior change.

The tools are:  social networking, incentives, games/contests, and automated coaching.

So if you are in the business of recommending investments or partnerships in the rapidly changing/growing space of connected health, the data is coming in.

Companies that figure out how to present objective data to consumers in a compelling way, combined with motivational coaching, social networks and gaming will succeed. Not all of these tools will be necessary.  But the trick will be finding out which one suits each individual.  Those entrants that have a highly customizable platform and an ability to sense what you as the consumer will respond to, will be the winners.

In 17 years of swimming in the waters of connected health, the single biggest insight I’ve gained is that individuals, when given objective information about their health, have the capacity to change their behavior.  I never dreamt how engaged and committed patients could be in managing their own health.  I know it sounds silly, but it’s a side effect of training as a health professional.  We undervalue the opportunity to engage patients in self-care.

The most useful construct for thinking about this phenomenon is the idea of feedback loops.  When you are driving down the road and spot one of those digital displays showing your speed as a flashing yellow light (compared to the speed limit), do you slow down? Most folks do.  That is odd since you are looking at redundant information – your speed is on your speedometer and you know the speed limit.  Somehow the juxtaposition of the two and the flashing are effective tools to change your behavior. That is a terrific illustration of the power of feedback in connected health.

Feedback loops have four important components (this is covered in more detail by my friend Thomas Goetz in a recent issue of Wired): evidence, relevance, consequences, and action.  In our experience, with connected health, it boils down to three things:  active reflection, the sentinel effect, and the ability to take action.  Let me unpack each of those.

Active Reflection

I’ve been impressed by the insights that can come from reflecting on objective health information. I wear a BodyMedia armband, which calculates activity level and caloric output among other things.

I like to cycle for exercise.  Last time I checked, an hour of cycling around town burns about 275 kCal. This time of year, I’m forced to spend weekend time on another activity I like less well, leaf raking.  I used to really resent the time I’d spend raking leaves because I thought I should be cycling in order to get exercise.  Imagine my surprise when I checked the caloric expenditure for yard work and found it to be ~ 400 kCal.  I realized my own ‘go to the gym equivalent’ in yard work and I don’t hate it so much any more.  Our patients with diabetes, hypertension and congestive heart failure talk about insights like these every day.  Eat a salty food today and gain a pound or two of fluid tomorrow.  Drink too much tonight and see your blood pressure go up tomorrow.  Karen Federico, a nurse with Partners Health at Home, tells the story exceptionally well in this video.

The Sentinel Effect

This is important.  About 10% of the population can achieve behavior change on active reflection alone, but the rest of us need some other motivators.  For many the idea that someone (particularly their healthcare provider) is going to see their data and hold them accountable to it, is powerful motivation to be more adherent to the program.  As one of our heart failure patients, George, puts it, “I can’t fudge because I can’t eat fudge!”  He hastens to add that he feels comforted knowing that, “trained professionals are looking at my information on a daily basis and available to take care of me at a moment’s notice.”  Here is a link to a video of George telling this story. The sentinel effect is powerful. It’s what makes connected health – in the context of healthcare provider management of chronic illness – so powerful.

The Ability To Take Action

Of course feedback loops would be useless without empowering individuals to change their behavior based on the insights they gain from pondering their health data.  We measure our success in this regard by looking at healthcare outcomes in the populations of patients participating in our programs.  Here are three brief examples.  A glowing pill bottle that reminds patients to take their medication and records that the medication was taken increased medication adherence by 68%, compared to a control group.  Diabetics engaged in active home glucose monitoring and sharing those results with their provider, via the Internet, showed a combined 1.5% drop in HbA1C.  During a six-month home monitoring program, patients with high blood pressure who monitored their blood pressure and received automated coaching feedback had a significantly lower blood pressure than those in a control group.  It’s clear that feedback can lead to clinically meaningful behavior change.  One of our pharmacists, Amy Bilodeau, does a nice job of explaining how this works with her patients in a linked video.

Our Patients Are Our Largest Untapped Resource

Chronic illness is on the rise.  The baby boomers are entering their high maintenance healthcare years.  We’re in a debt crisis and we MUST bring down the costs of healthcare.  Our profession has reacted by pushing electronic records, the patient centered medical home, and accountable care.  All of these are worthwhile, but I’ve yet to see a concerted effort to bring patients into the process.

Start tracking something (blood pressure, steps, weight).  Engage a coach and make some commitments.  Share your insights with your doctor and move the conversation forward.

I’m excited to say we have a big Media Lab focus at this year’s Symposium.  Two of their current giants, Sandy Pentland and Rosalind Picard, will be speaking  as well as a Media Lab graduate, Tim Bickmore, who is doing amazing things with his program at Northeastern.

These three have something in common that excites me.  They are exploring the boundaries of technology in its ability to substitute for humans in the caring process.

Sandy has been prolific in commercializing his work, first by founding Cogito, a company whose goal is to pick up your mood state based on a 10 second voice print.  Subsequently, he launched Ginger.io, which is founded on the basis that all of those electronic bread crumbs you leave behind each day (GPS data, who you text, who you call, where you spend money and what you spend it on, etc.) can be analyzed to come up with a unique health behavior print that can aid in both public health applications and in encouraging you to improve your own health.  I recruited Sandy to be on the Scientific Advisory Board of our Center’s spin out, Healthrageous, because I value his perspective on this topic of disparate data collection and analysis.

Roz has been working for years (she was Tim Bickmore’s adviser) on ‘affective computing.’  She is also a founder of Affectiva, a company whose technology can objectively assess your emotional reaction to stimuli via a wrist sensor and face-recognition technology.

Tim’s team continues to impress with their implementation of Relational Agents, software agents that are designed to exhibit relationship-building behaviors.  His most recent achievement is showing that, strategically used, these software agents can participate in health care delivery and that patients prefer them to doctors and nurses.

So how do they all fit together?  As the demand for health care services (largely driven by lifestyle-related chronic illnesses) skyrockets, we don’t have enough providers to meet the need and it doesn’t make sense to try to train or import them.  We’re also trying to control costs, 60-70% of which are related to human resources, so adding more will not solve that problem.  We MUST adopt solutions that increase self-care and spread providers across larger groups of patients.  However, for a number of cogent reasons, we can’t abandon our roots as a caring profession to pull this off.

Think of it another way.  To get the most out of our providers we will need to look beyond the traditional office visit.  Expecting patients to meet one-on-one in a physical location creates a true bottleneck for health care delivery.  However, using today’s technology, while I can get a near continuous read of your weight, blood pressure, blood glucose, activity level and some data on your sleep, I can’t put those physiologic measurements in any kind of emotional context. That is arguably one of the most important aspects of what the doctor does in the office exam.  Systems like Cogito and Affectiva are the beginning of providing the emotional sensing to enable the doctor to get a full picture of your physical and emotional state, in a time and place independent manner.

The other side of the office visit is caring for the patient.  There are myriad of data showing that a patient that feels cared for will do better and that the strength of the patient-provider relationship is important in health outcomes.  So how do we extend our providers across greater numbers of patients while preserving that caring bond?  Undoubtedly it will be a challenge. But Bickmore’s work showing that patients prefer relational agents in certain care settings is an encouraging first step to getting us there.

As I said, the Media Lab is leading the way in creating these technologies and showing their early phase potential. We at the Center for Connected Health are pleased to have a strong showing from their faculty at this year’s Symposium.

Brent James is Chief Quality Officer at Intermountain Healthcare based in Salt Lake City.  He is known nationwide for his relentless focus on quality, measurement and outcomes. His organization is the envy of health care leaders far and wide, as they’ve been able to deliver high quality, standardized (do I dare use that charged word?) care and achieve success — by all measures — doing it.  Brent was featured in a wonderful New York Times Magazine piece in November 2009.  He is on record advocating for improved efficiency of care delivery, for measuring our effectiveness and for reporting these data to patients, payers and regulators. He is also on record advocating for shared decision making and for wholesale payment reform.

Atul Gawande needs no introduction to most of you.  He has been a prolific writer for the New Yorker and published three New York Times bestselling books.  He has a wonderful way of telling stories about his training and work as a surgeon, about his experiences with patients and about how we, as professions, can do better.  He too is passionate about quality improvement.  He has taken the simple idea of checklists and made that into a movement in healthcare, using time-outs, lists, and processes to prepare for events that have a high degree of potential patient safety risk (surgery being the prototype).

We are excited that both of these giants will be sharing their thoughts with us.

Why did we recruit them and how do they fit in to the connected health ecosystem?

Both share a passion for patient-centric care, as we do, believing that it is fundamentally better care and will conserve dollars.  Both are advocates for health information technology and connected health is a subset of that domain.

The best way to contextualize these two speakers, though, is to think about how a connected patient population would impact their respective visions.  Imagine a world where we are all equipped with ‘wear and forget’ sensors continuously streaming wireless information about one’s health. This forms a powerful set of information to analyze and on which to base quality and performance decisions.

A good example of this is our Diabetes Connect program.  Patients who are having challenges controlling  their A1c or are starting insulin therapy upload blood glucose readings to our database using a wireless home hub.  We share that information back with them in a way that is contextually relevant; we also provide it to a diabetic nurse in dashboard format so decisions can be made just-in-time about care plan modifications.

We’ve shown that increasing engagement from both patients (as measured by frequency of blood glucose upload) and care provider (as measured by frequency of logging into the Diabetes Connect website) lead to improved A1c (up to a 1.5% drop when both parties are engaged).

Imagine, for example, if Dr. James’ vision of quality and measurement was enhanced by these sorts of data streaming in about all of Intermountain’s patients.

The opportunities to analyze, segment, intervene and measure the effect of interventions are enormous.  We believe this will be a reality in the not-to-distant future. In fact, based on the success of programs like Diabetes Connect, our organization, and others, is moving steadily in this direction.

At the Connected Health Symposium, we’ll have the opportunity to discuss the challenges of improving quality care, patient safety and efficiency with such thought leaders as Drs. James and Gawande who are, right now, putting technology to work – and making it work for providers and patients.

First up, psychology and connected health.

We are delighted that Cliff Nass, author of “The Man Who Lied To His Laptop” is speaking at the Symposium. At first glance, you might wonder what the connection is between a psychologist who uses computers to tease out the basics of psychology and connected health.

I was first attracted to Cliff’s book about a year ago.  I’ve been very interested in the role that computers can play in substituting for humans in providing the emotional aspects of care.  This can be an off-putting concept to some, but we are at a cross roads with respect to the demand for medical services and the supply of providers.  We don’t have enough healthcare providers to go around, especially if we continue to demand that a face-to-face encounter between patient and provider is required to move a treatment plan forward.  So when I saw this book title and the review in The New York Times, I was intrigued.

The book is both entertaining and informative.  It reads like a guide to success with such pearls of advice such as:

Praise others (but not yourself) freely, frequently, and at any time, regardless of accuracy.

Clear personalities are better than ambiguous personalities, even if they do not match that of the person with whom you are interacting.

Traditional team-building exercises don’t build teams because they support neither identification nor interdependence.

Your persuasiveness comes down to whether people perceive you as expert (are you worth listening to?) and trustworthy (should you be listened to?).

Being labeled an “expert” or a “specialist” grants you all the persuasive power that actual experts have.

All of these and many other truths are convincingly laid out using a common experimental framework.  Namely, Nass and his students use computers as emotional agents, but ones that are absolutely controllable (in a scientific sense) so they can tease out the psychological variables that lead to the conclusions above.

This all makes for great reading. But once again, you may ask, what is the relevance to connected health?

To me the relevance is in the part of the story that Nass tells early on and then dismisses.

Have you heard the story of the border guard who watches a young man with a bicycle cross the border day after day?  Each day the guard stops the boy and searches him because he is suspicious that the boy is smuggling.  After years of this charade, the guard, in frustration, finally asks the boy, “Alright, I can’t stand it…what ARE you smuggling?” to which the boy smugly answers, “bicycles.”

The relevance to connected health is right under our nose.

It is amazing that Nass and his colleagues can draw study subjects into innumerable scenarios using computers as agents of behavior change.  Here is a brief excerpt describing some of them:

 “I’ve had to put participants in my experiments through many struggles and travails: answering difficult math problems amid the pressure of stereotypically superior competitors (in the form of avatars), dealing with a nagging passenger and frustrating roads on a drive (in a driving simulator that talks), enduring false praise and criticism (from a game-playing computer)….”

Study subjects found all of these gimmicks convincing, or at least their behavior was altered.  This is the hidden gem.

So, here is the connection to connected health. What Nass’ experiments show is that the applications for using computers to bond with our patients and alter their behaviors are enormous.

I look forward to Cliff’s keynote and hope he will spend some time on this connection.

A related presentation will come from keynoter Tim Bickmore whose relational agents have repeatedly been shown to be a potent tool for behavior change.  Among the experiments I’m sure Tim will talk about is our collaboration using Karen the Virtual Coach.  Patients who had a virtual ‘meeting’ with Karen three times per week did significantly better in achieving their activity goals than controls. Likewise, Tim has some impressive data showing that using a relational agent for hospital discharge is preferred to having discharge planning done by a human.

These presentations create a theme around how we can use technology to provide care to our patients, make them feel cared for, and allocate our human resources to serve more patients at any given time, attacking that supply and demand mismatch.  There will also be some debate and commentary on this area and my own talk, “Quantification as a Tool for Behavior Change”.  All in all, the topic of computers as agents of behavior change will be well covered.

At the Center for Connected Health, we are using sensor technologies as tools to encourage health and wellness. We use weight to track fluid gain in our congestive heart failure patients, glucometer readings to track diabetic control, blood pressure readings to correlate lifestyle changes with changes in blood pressure and smart pedometers to give folks feedback on their caloric output.

This approach clearly provides more rich and accurate patient information. But, our research also demonstrates that when patients gather these data, and know that their health care provider is regularly reviewing their individual results, they feel empowered to better manage their own care – and this dramatically improves adherence. For motivated patients, access to their own data in context is powerful, but  providing these patient data to health care professionals ups the stakes significantly.

Imagine a discussion with your doctor or nurse at your regular office visit. Instead of asking you about your weight, or your recent exercise level, the health professional looks at a screen and begins a dialogue with you about how adherent you have or haven’t been to the care plan you agreed on. Scary thought? Nowhere to hide?  Perhaps, but once you have embraced the need for certain health behavior changes, these tools promote an honest dialogue with your provider.

Our patients tell us how motivating it is for them to know that their healthcare provider is reviewing their personal health data.  It is one of the most compelling ways for a provider to demonstrate they care. In some recent focus groups we ran, diabetic patients were quite willing to annotate their personal data with information about diet and exercise to put their glucose readings in context if they were assured that their health care provider would look at the data and use it as part of their decision making.  Our heart failure patients consistently tell us how knowing that a nurse will be calling if their weight goes up 2-3 lbs is a strong motivator for them to watch their salt intake and stick to their fluid restriction. They tell us how the technology empowers them to be better self-caretakers.

My favorite example is the congestive heart failure patient who, in commenting on his required daily weigh-in said, “I can’t cheat on my diet anymore. If I have too much salt today, it will affect my weight tomorrow. When my weight goes up, they have a nurse out here within half an hour.”   We actually don’t dispatch a nurse for every elevated weight, but the psychology around objective information and the resulting accountability is striking.

Patients live with their illness all day long, 365 days a year, and if they are careful observers, they can provide infinitely more detail about their illness than can be recorded in an annual visit to the doctor.

Hypertension management is a perfect case in point. Most physicians who manage blood pressure do so on a few – and often as few as two – readings per year taken in the doctor’s office. Our Blood Pressure Connect program allows patients to take blood pressure readings daily or more often and provides a trended report to their physician on how blood pressure is varying and what aspects of the patient’s life impact the readings. The immediacy of information in this type of model allows patients to self-manage through diet, exercise or lifestyle decisions as never before, preventing exacerbations of their condition or the onset of complications that would necessitate intensified use of healthcare resources.

Providers are realizing the power of staying connected to their patients once they leave the medical setting, being able to monitor their vital signs in real time.  Patients are more motivated than ever before to get involved in their care, and are empowered by the personalized information they can receive and comforted to know that their healthcare providers are watching. Even employers are jumping on the connected health bandwagon, seeing how employee wellness and disease management efforts can create a healthier, happier workforce while reducing healthcare costs.

Better, more accurate collaboration between patients and providers – supported by technologies such as smartphones and wireless devices – is at work to improve care, improve outcomes and improve the doctor patient relationship.

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?