Reversing Diabetes: When Person care is more effective than Medical care.

 

 

Sam was a typical dad with three teenagers and a dog. His days were spent with long hours at the office sitting mostly at his desk, driving in his car or watching sports on T.V. Sam rarely said “no” to fast food… until the day everything changed. This day started out like any other, but without any warning, he woke up inside an emergency room. Sam had passed out at work and arrived at the hospital confused and disoriented. A quick peek at his labs (Glucose 939 mg/dL, Triglycerides 6701 mg/dL, HbA1c 11.5% and High density Lipoproteins a dismal 13 mg/dL!!) and suggested Type II Diabetes. (Ouch!) Really, that fast? One day he was “perfect” and the next day he was suffering a devastating chronic disease. Not exactly; Sam’s pancreas had likely struggled to manage his blood sugars for years and he may have dismissed symptoms of thirst or excess urination as somewhat “normal” for him.   Passing out at work was clearly not normal. Sam was staring into a future of medical bills, pharmacy and doctor visits, a strong possibility of future heart disease, kidney failure, neuropathy and impotence. However, Sam’s doctor, Miles Hassell M.D. suggested he might be able to reject this future if he were to adopt a Mediterranean diet and begin a daily exercise routine. This sounds simple but is often difficult to accomplish long term. Sam was no stranger to hard work. He set about starting his day with a brisk walk before breakfast. He recognized both sugar and flour as the enemy. He avoided all sweets, breads and baked goods. Eleven months later, his weight had dropped from 212 pounds to 155 and his labs improved dramatically (Glucose 102 mg/dL, Triglycerides 75 mg/dL, HbA1c 4.9% and High Density Lipoprotein 39 mg/dL!!). His physician stopped all four of the meds that were started that fateful day a year ago. Now, two years later, Sam is still without meds and feels great and continues his attention to healthy behaviors.

It is not uncommon that folks may be unaware that a serious illness may be brewing. According to the American Diabetes Association http://www.diabetes.org/diabetes-basics/statistics/ up to a third of folks with diabetes may be undiagnosed.

It is however uncommon, almost unheard of, to actually reverse diabetes. There is no simple medicine that can do this. Sam succeeded in 20 or 30 small daily changes that together had the power to significantly impact his health. With more than 1.4 million new individuals diagnosed with Diabetes every year in the US, capturing Sam’s experience and sharing it with others saves each of us from having to figure it all out again. Increasingly, as our busy lives drive us deeper into unhealthy life styles we will need to rely on digital tools and the crowd-in-our-pocket (Peer Health) for access to the recommendations that are likely to work IRL (in real life).

Cor testing and the benefits of Strava-ize-ation

Another great article via linked in this week covers Bob Messerschmidt’s home cardiac health measuring device called Cor.

Reader comments include questions regarding whether it really make sense to check our blood at home frequently. Who needs Cor anyway? In short, all of us.

 

Clearly each of us use our hearts and blood vessels daily, minute by minute, second by second without conscious communication between ourselves and our biology. If we all could expect ten decades of perfect function, this lack of conscious input would likely suite each of us just fine. Sadly, heart disease is no longer a chronic disease of the aged, it happily affects some of us within our second or third decade of life.

Tooling the consumer to witness the ebb and flow of their personal health expression will be fundamental to improving health outcomes. Cor teaches us how to deliver transparency into cardiac health expression without becoming a medical device. This is a great start. Though not discussed in the article, it would be of benefit to crowd source the personal improvements individuals select to execute between readings.

Assume my Cor reads my HDL as sub-optimal and I get a number of recommendations: start fish oil tablets, quit eating bread, avoid flour products, eat fish 3 or more times a week, exercise for 30 minutes daily and so on. As a Cor user, I could select the items I am willing to work on, track them with a simple intention tracking app and feed this back to the Cor back end. Only this way will Cor have the chance to learn what the free living system is capable of and over what period of time.

This intention tracking app plus Cor combination elevates the user from simply seeing their own data over time to becoming a micro-health worker deliberately advancing our understanding of what it takes to move the needle.

Assume my intention tracking app reported to Cor that I did the fish oil only 75% of the time over 6 months and similar data regarding the other efforts. With many users we could relatively quickly inform each other of the best options and their relative confidence intervals in optimizing our health expression. In this way each of us benefit from each other’s experience thus providing a more compelling reason to participate long term.

This combination begins to take on properties similar to Strava the app that tracks communities of riders and runners. Experts do not know what is possible in terms of time on a bike for a certain trail or terraine. Strava is the platform that allows the riders to determine what is possible. In this way the group or the free living system begins to define and benefit from knowing what is indeed possible.

As Cor and other home collection technologies adopt a more Strava-like functionality, they too are likely to benefit from widespread and sustained adoption.

The Last of the Accidentally well…

The U.S. is about to lose a national treasure. Within a few decades, we will lose the last of the accidentally well – a large population that acquired a level of health, fitness and cognitive performance that they did not expressly set about to earn. What they acquired came to them by virtue of the time in which they were born. At that time, parents had no need to understand what refined carbohydrates and trans-fatty acids were, or to worry about their children getting sufficient levels of activity. High calorie fast food was not yet ubiquitous, and children tended to play outdoors, rather than plunk themselves down in front of TV sets, computer keyboards, or game consoles. During the heyday of accidental wellness, prior to the 1980s, Type II diabetes was relatively rare in the US population. By 2010 it had risen to more than 8%, and may continue to climb.[1] Likewise, U.S. students were once consistently ranked in the top third, globally, in math and science. Now, we see grim evidence they are losing significant ground academically.

[1] http://www.all4ed.org/files/IntlComp_FactSheet.pdf

 

A note about me…

I have enjoyed many roles including as a primary care physician, researcher, author and multidisciplinary collaborator as well as a closet cyclist and distance runner. I am often found assembling and impassioning a diverse team of stakeholders anxious to transform health outcomes through crowd-based intelligence, medical device integration, and informatics-driven new business models. I have completed my medical degree at the University of British Columbia, and internship at McGill University, Montreal, Canada and currently reside in Portland, Oregon with my husband and two children.

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Hello world!

Thank you collectively for advancing the on-line ecosystem such that novices as myself are surprisingly able to produce and publish a blog. Fascinating really. This is a much needed nudge to get past simply generating papers to constructing consumable bites of interest and value. I plan to work on the consumable part first and hopefully the interest and value will blossom eventually.

Chapter 6: Personalized Medicine and Public Health

Warning, this is a long piece and offered here for those interested in more context…

20131016 WH CH 6 Piniewski FINAL  

Life Streams, Walled Gardens and the Internet of Living Things

On June 2, 2015, Hagen Finley and I jointly presented a webinar for O’Reilly Radar…”The Internet of Living Things, what makes sensoring and monitoring data emanating from our bodies unique, and why we should elect to participate in this seemingly Orwellian mistake of open-sourcing our personal health data”.

We are at a threshold in the history of personal data. Sensors and apps are making it possible to generate digital data signatures of important aspects of healthy living, such as movement, nutrition, and sleep. However, we are rapidly losing the opportunity to erect a Linux-like open “living-well” data system steeped in open commons principles. We can either join together to ensure enlightened open source and crowdsourced discovery practices become the norm for our living-well data footprints, or we can passively allow this data to be sequestered into one of the walled gardens offered by health systems, funded research, or big business.

Why this is important?

Living-well data provides the map by which vast amounts of preventable human suffering can be prevented. Everyone can benefit from the health journeys of those who lived before us because our modern societies are no longer “accidentally well.” Decades ago, parents had no need to question the nutrition a child was offered or concern themselves with how much activity a child engaged in. No deliberate use of devices was needed to track these important health contributors. Reasonable access to whole foods (farm foods) and reasonable amounts of activity were provided, as it were, by default — in other words, by accident. This resulted in remarkably low rates of chronic disease. Today, communities cannot take those healthy choices for granted — we are no longer accidentally well.

In modern times, we must make deliberate choices to achieve adequate levels of activity, nutrition, and sleep. Over the decades of our lives, those choices provide an effective backbone for living well. Without those deliberate decisions, the default is set for dangerous amounts of sedentary behavior, over use of refined carbohydrates, and many more unhealthy norms. Together, we will need to build and maintain a robust living-well data repository or reference data base that collectively informs our general habits in dynamic and timely ways in order to achieve optimal living for ourselves and our families.

Open commons data principles

The Linux and open source community grew out of a keen appreciation for crowd-driven innovation and negative experiences associated with the cost and limits of vendor products. Perhaps, more importantly, the open approach to software development fostered a spread and advancement of skills for all participants. Today, many health-tracking apps and devices are offered as siloed vendor and point solutions. Many users are seduced by the lure of ultra-user-friendly smart phone interfaces: why not let the Googles, Apples, and Facebooks solve our data integration problems for us?

While we wait for the Internet mega-corporations to dazzle us with slick new wearables and health apps, we are rapidly losing the opportunity to erect a parallel (Linux-like) open living-well data system steeped in open commons principles. Could the open source health data community launch a movement to inject more open data/system management principles into Google, Facebook, and Apple, and avoid the walling off of our living-well data stream? Learning how to optimize our health will depend on it.

In the past, individuals had limited access to their sickness and treatment data by conscious design. American payer and provider systems walled off that information, ostensibly due to concerns including a patient’s lack of sophistication to grasp, interpret, and/or respond appropriately to that data. Although there are situations where sharing raw medical data with patients and the public could result in misunderstandings, limiting access to a patient’s own data also fosters and reinforces the patient’s dependence on specific health professionals. As a result, individuals struggle to use alternate sources for health care and seldom gather the incremental skill to improve their own healthy behaviors.

We have much to learn from each other. The digital exhaust of both healthy individuals and those burdened by poor health provides the young a wealth of information to help navigate an ever-widening set of living choices. Understanding why one group fails to become ill or manages to postpone chronic diseases that afflict another group is a small task given the plethora of apps and devices that could convert human experience into explorable data streams.

Health care payers and providers have yet to claim they should curate and interpret our wellness data. However, a greater threat may loom on the horizon in the form of Internet services from companies like Google and Apple, who are jockeying for position in the race to ingest, store, and perhaps “own” access to our wellness data.

Why do we need each other? Can’t we rely on research to provide directives for living well?

In short, traditional research cannot hope to keep up with the pace of modernization. Science advances slowly while technology re-invents our lives at a dizzying pace. Resources for research are limited and scientists cannot study all things. Therefore, scientists pick and choose research topics based on criteria that might matter: prestige; funding stream; and, hopefully, health impact. In the end, the landscape of all scientific knowledge is made up of peaks and valleys. Peaks of isolated knowledge driven by the concentrated study of well-funded academic pedigrees surrounded by vast valleys widely devoid of scientific understanding. Consequently, health knowledge is not democratized across all human suffering. Instead, only the peaks of suffering benefit from diagnosis and effective treatment. In addition, our legacy scientific research systems strive to reach the gold standard of Randomized Controlled Trials (RCT)-level evidence. This level of rigor is woefully expensive and burdening.

These legacy RCT systems used to be the only systems we had. Consequently, they shaped our understanding of illnesses that could be reduced to a narrow causative agent. However, the RCT approach is relatively poor for interpreting complex multifactorial events such as those that form the basis for living well. Today, we can augment the RCT approach with big data tools and uncover correlations across a multitude of possible contributions from both health and sickness data.

Manufacturing uses technology to track and optimize engine performance

GE needs access to data about its jet engines’ functioning and broken parts to determine the engineering specifications for the best performance and longevity. For example, real-time jet engine tuning parameters can suggest a different fuel mixture is required when the weather changes. In that model, all the engines on all the planes can benefit from those insights immediately — in real time.

If our living-well data gets sequestered, waiting for the scientific or business community to determine what issues are worthy of research funding, we risk this critical longitudinal data will gather dust or be used selectively. Humanity should expect — or even demand — the basic information necessary to defining living well to be open and explorable by almost anyone. Living-well research is uniquely suited to an open source- or crowdsourced-driven research and discovery model.

For example, http://www.bluezones.com/ has uncovered an association between longevity and incremental daily meal size: largest at the bottom/breakfast, medium-sized meal midday/lunch, and smallest meal before retiring/dinner. Understanding such mundane, yet potentially high-yield details is not likely to attract funding from the National Institutes of Health (NIH) or a high-value IPO startup.

Within the walled garden of medical knowledge, translating scientific discoveries into public health action often takes 17 years. That may be acceptable in the case of high-risk treatments or drugs, but it doesn’t make sense to burden low-risk living-well insights with the same research testing rigor. The safety margin is relatively wide for living-well choices.

Pulling the best performance from personal biology will, by necessity, become a group or team sport. Open data practices can provide the repository to enlist our collective selves in the task of rapidly acquiring and spreading the skills needed to ensure optimal health throughout the decades of our lives.

Each of us has a responsibility to ensure unhampered access to the data that explains the health implications of our cumulative living choices. A keen curiosity and basic skills to query living-well repositories must be as accessible as the water we drink and the air we breathe.