Creating a New Healthcare Paradigm

The healthcare community has been abuzz the last couple weeks over the Apple Watch’s ability (or not) to detect irregular heartbeats in attempt to predict atrial fibrillation. Enthusiasts, naysayers, survivors, Eric Topol, and everyone else in between have been giving their assessment of the results of 400,000+ person study done in conjunction with Stanford University. Some praised the results, others obsessed on the chance of false positives causing unnecessary alarm in apparently healthy young adults. I’m guessing where someone’s opinion fell is pretty much where it started out.

That said, the new Apple Watch, Version 4 is not a FitBit. This is not about adoption of a new-fangled gizmo that after a month will end up in the top drawer of your nightstand next to the (no offense to the FitBit). This is the next generation of that smart device that never leaves your side, or your wrist. I’m not trying to be an Apple commercial … rather just acknowledging a bellweather fact of a societal shift in how we view health and what it means to take care of it.

This is a serious entry into a market by the largest, richest example of capitalism the Western world has ever seen; one whose iconic founder’s last corporate directive was to disrupt healthcare in a way he successfully did to computing, telecommunications, music, retail and essentially culture as we now know it. And it’s one that its current leader has fully taken to heart.

In an excellent piece on digital health usage among young people, Susannah Fox, former Chief Technology Officer of the U.S. Department of Health and Human Services, found these teens (14 to 17-year-olds) and young adults (18 to 22-year-olds) making extensive use of a wide range of digital resources to access health information, tools, peer support, and providers online (Digital Health Practices Among Teens and Young Adults: Key Findings):

  • Nearly nine out of ten (87%) teens and young adults say they have gone online for health information: the top five topics searched are fitness (63%), nutrition (52%), stress (44%), anxiety (42%), and depression (39%).
  • Nearly two-thirds (64%) say they have used mobile apps related to health, including for fitness, sleep, meditation, and medication reminders.
  • The majority (61%) say they have read, listened to, or watched other people share about their health experiences online, whether in podcasts, TED talks, or YouTube videos.
  • About four in ten (39%) say they have gone online to try to find people with health conditions similar to their own, using methods such as participating in online forums or closed social media groups on specific issues, doing hashtag searches on social media, or following people with similar health conditions.
  • One in five (20%) young people report having connected with health providers online, through tools like online messaging, apps, texting, and video chat.

To the old guard firmly ensconced in their white coats and stethoscope technology conceived 100 years ago … ignore at your peril. Retirement may best be had earlier than later.

James Rizzi - Summer in the City

The world is increasingly becoming one whose inhabitants have never been without a smart phone – a computer in their hand. Texting and social media isn’t something they take breaks from – anymore than eating or breathing. And that’s not just your teenage kids … it’s becoming everyone. Imagine your life without a car. It’s no different.

The healthcare industry in the traditional sense can longer be debating whether they should acknowledge these gizmos in their patients hands anymore than we can debate that climate change is real. Denial only shows an allergy to change and says little of the context and everything of the person. Physicians and providers will very soon need to put forth all available resources in integrating these digital tools into the process of their patient’s care. If they resist … well, I’ll say it again: it’ll be at their own peril.


Consumers of Health

We can’t just limit our attention to that of cardio health technology though. The Apple Watch and its siblings competing for our attention and our dollars represent much more. They are an emblem of the empowerment to take control of our health. Being constantly reminded of your health status transcends the once a year check up by putting it front and center on demand. The level of our potential awareness is omnipresent. And with this elevation will come modification of our behavior; maybe not always overtly, but at least covertly. Consumers of cheeseburgers can now be consumers of health. And with that will come changes in what the marketplace offers. For example, McDonald’s just announced they’ve removed artificial ingredients from their seven classic burgers, including the Quarter Pounder and the Big Mac. While no bastion of healthy eating, McDonald’s actions show a recognition that health plays a role, an increasingly larger one, in the decision-making of their patrons. These same people will also demand the same empowered recognition from their physician and health provider. And with each day their voices will grow louder. Patient collaboration improves self-efficacy. If patients think what they are doing is going to help their outcome … they’re much more likely to do it. And the act of “doing” is power in itself.

To accommodate this new paradigm, healthcare providers will have put forth resources, both financial and attitudinal, to accommodate the movement of patient health data; or as they call it in the industry, interoperability. This interoperability must extend from within the confines of their clinic walls to other providers (often competing ones) to the personal data gathered by the health consumers themselves. In their new empowered state, patients and consumers will want access to their health information no matter where and how it’s gathered. And if the healthcare provider wants to maintain market share, they will have to oblige. The OpenNotes movement is making strides raising awareness and organizing patients to demand their providers give them access to the notes physicians take during and after their visits. At last count over 26 million consumers are represented by healthcare providers who subscribe to this process … and this number will only increase exponentially. Just yesterday, I was involved in a Twitter thread on the realism of recording patient/physician office visits.

Even with this data flying in all directions – a true health collaboration runs the risk of being siloed in the domain of only the technical assessment of the physical body. We are much more than that. We are an accumulation of our experiences; our environments, and the actions and reactions we make in those environment. We are products of how we grew up, our education level, the work we’ve done, where we’ve done it – and maybe most of all who we’ve done it all with. This is our narrative, or as I call, an Engagement Narrative. The idea for this came from many inspirational discussions I have had with the patient engagement leader, Jan Oldenburg – as she puts her interpretation of it to use in real life. This narrative must be taken into account when looking at our health and well-being – and what we should do about it going forward in our lives.


The Ivory Tower Must Go

The days of the patriarchal middle age white male in a white coat standing in front of you as sit on a hard exam table in an open back gown, stripped of all power and dignity, are fast becoming a relic only to be seen late at night on second tier cable television. Today’s physicians are not different from the people we see everyday. Many are just as tuned into technology as their most informed patients. They’re health consumers and patrons of Apple and Amazon just like us. They reflect the population. Women and ethnic minorities represent an increasing portion of the demographics making up the industry (though not nearly enough).

It’s not just that our physician demographics have changed; so have the societal conditions around us. Our population is aging and with it is the increasing role played by caregivers. With the prospect of Trump-induced knee-jerk governmental austerity measures looming daily – our mental health is constantly being put to test. Health happens outside the clinic walls more than it does within them … and someone has to be there to assist. In most cases this role is played by spouses, adult children, grandchildren and other family members. But we can’t discount the part played by other stakeholders outside immediate family. Friends and neighbors should be considered an active part of the support solution. This will be even more the case with the government trending towards abdication rather than responsibility. These components of a changing technical and sociological health landscape are demanding a new vision … a new paradigm.


A Collaborative Health Paradigm.

We must create a national movement of empowerment, one of New Power, revolving around health and well-being that transcends our current definition of “healthcare.” The traditional position of fee-for-service reimbursement is coming to an end – though not nearly fast enough. In its place I hope will be compensation models that reward healthcare providers for their role in elevating the health and well-being of not only their patients, but also the communities they operate in. And this new role will require collaboration from parties beyond the constraints of “healthcare” itself.


The Health Consumer as a collaborator

If we, as health consumers and patients, don’t look to ourselves as being the main source of  health – the actions of our healthcare providers don’t really matter. Past are the times when your physician was the only source of good health. And gone are times your annual checkup is the only times you even think about your health … if you even do that.

The first step in taking control of your health is creating an Engagement Narrative. The Engagement Narrative is much more than just your story though. It’s an exercise in self-awareness. The very act of writing something down makes it real, something you can refer to and build on. Creating the Engagement Narrative also gives you an unprecedented opportunity to involve those close to you to shed light and become more involved in your life. This collaboration will provide more insight and commitment than if you just composed it yourself. And with it carries accountability. Not only are you writing down where you’re at and where you want to go … it’s being shared with your closest confidants. There’s no escaping now. Whether you like it or not – you have a team behind you.

Even with an enhanced physician relationship brought on by your Engagement Narrative, your path to health involves much more. Inspirations for well-being comes from everywhere. Just your normal day-to-day comings and goings give you a multitude of opportunities to better yourself through simple engagements – however insignificant those engagements may seem. Participating in a local clean up effort gets you off the couch and gives you an opportunity to meet new people; taking you out of your comfort zone and building synaptic connections. Deciding to walk to the store rather than … well not, can start a habit that literally can change your life.

Your positive actions will also have an effect on others – contributing to their health and collectively that of the community. A simple compliment in line at the grocery store can not only make a person’s day; it may cascade into the validation of a decision they made (say a new hair style) that empowers them to carry themselves with confidence before an important meeting or job interview. No act of kindness is too small. No engagement is insignificant.


Healthcare providers as a collaborator

My idea of the healthcare provider isn’t a physical clinic at all, but a relationship; beginning with one person, a concierge, who would direct me to who and where I need to go (including transparent options) for specific situations, including prevention advice. Imagine a human health interface. Accompanying this human component would be comprehensive AI functions integrating and managing my care, as well as suggestions to elevate my self-efficacy. All administrative functions would be hidden from me (appointment setting, forms, etc.) – synced with my personal data wherever its origination, and available on the technological communication conduit of my preference. In addition to my technical data, my healthcare provider (physician and any support staff) would refer to the Engagement Narrative I provided them (personal and professional history, etc.). We’re all on board recognizing health is a function of my environment and my interaction with it as much (if not more) than anything happening between the four clinic walls.

Being a healthcare provider, we need you to lobby for our communities to be places that prioritize people and relationships – not cars, parking lots and box stores. We need you to take the money you don’t pay in taxes and invest it in community gardens, farmers markets and street fairs that showcase local art encouraging creative engagement. We need you to lead the way advocating for healthy eating by including cooking and nutrition as an integral part of our treatment. And while you’re at it – include our stakeholders. We need you to be advocates for engagement and “getting out of the house.” Communities that encourage something as simple as allowing dogs in parks will boost their residents’ collective health and well-being. Why not propose that at a city council meeting?

But however substantial your clinic’s direct efforts may be, whether it be setting up a farmers market in your parking lot or organizing mentor groups for current cancer patients – we need you to do more. We need you to use your stage and your megaphone to reach the entire community. We need you to be vocal when you see politicians and government not doing what they should to improve the human condition of our communities. You should be a regular contributor in the OpEd section of the newspaper. You can’t hide behind the nonpartisan label just because you’re afraid of losing a few ideological wayward customers. Losing them is nothing compared to losing your integrity and human decency. And believe it – there are people out there like me, who can write better than I can, who aren’t afraid to call you out on it … publicly.


The community as a collaborator

Our actions and reactions determine our physical, mental and even social health. We our products of how we interact with our environments – as well as choosing what environments to put ourselves in. In the post A Saturday in May … a study in engagement, I chronicled a day of incredible experiences I had entirely due to breaking outside my comfort zone.

We need to use our daily routine as a source of good health and well-being. Everywhere we normally go has the opportunity to nudge you in a healthy direction – we just have to look at it that way and engage. We have to be present and mindful. I call these physical sources of opportunities in your community, Front Porches, named after the front yard gathering spots so often seen in Latino communities that are used for neighborhood discussion and connection to the street. Only in this context, they’re very often small businesses … places we probably already frequent, like the corner grocery store or our habitual morning coffee shop. But it’s not just businesses that can be Front Porches though. It’s anywhere where people gather than can be turned into hubs of social interaction and civic engagement; schools, parks – even our neighbor Bob’s garage with the big screen television. From this engagement we can create home-spun volunteer efforts that mend the social safety net commonly let to fray by our traditional institutions. These efforts can range from to fixing a school playground, to organizing an elderly outreach effort, to even spearheading a high school mentoring program.

Ivan Illich argued that it is not a case of ‘either/or’ (community or institution), so much as a question of, which comes first. He contended that an institutional inversion had taken hold in modern societies, through which the community role becomes that which is left after the institutions and their professional helpers have done what they think they can do better or more expertly. Illich contested this inversion, and argued for its reversal whereby the institutional and professional role should be defined as being that which is left after the community has done what it can and wants to do. (Cormac Russell in “Does Medicine Make Us Sicker?”)



Today … looking forward

Healthcare is changing. Reimbursements are now starting to be tied to community health metrics. No longer is it only about number of procedures and tests. But still – this progress is slow. It needs to be turbo-charged. It needs all parts of the community working together for individual and collective goals. The days of the silos of healthcare and looking at health from only the perspective of medicine are numbered.

We must create a societal “wave” of health and well-being. It will be up to all parties, including healthcare providers, to decide which side of the societal evolution they wish to be on. Profits and revenue can be very fickle … and fleeting. Pleading ignorance or thinking that substantive change is beyond the parlor rooms of their ivory towers isn’t a viable option.

The barbarians are at the gate … and they’re the ones who are paying the rent in those ivory towers.


Related Posts:

Hobbes, Hume … and Healthcare

A recent 60 Minutes episode on the Stoneman Douglas leaders of the #neveragain movement included a discussion with Emma Gonzales’ mother. We stand behind her, Emma’s mother’s friends said. “You go out and get that law changed. But where are we – we should have done this 20 years ago.” – was the elder Gonzales’ response.

In the six weeks since the Parkland shooting, the kids of the #neveragain movement have successfully waged war on the ridiculous gun promiscuity in the this county. They’ve helped spearhead a nationwide student walkout that took place in over 3000 schools. On March 24th, a week ago, they organized the March For Our Lives in Washington D.C. and over 800 other cities worldwide. Crowd estimates in D.C. alone were over 700,000. Limited gun control legislature has been passed in several states as well as nationally. These kids of the “no fear” generation have become the adults in the room – while the adults are at the kids table throwing peas at each other.

The older generations in power are standing behind the kids. But that’s as far as it goes. As adults we sit by paralyzed – hoping the kids will fix the problems we created. We’ve become fat and lazy. We complain about special interests in government yet we keep electing the same clowns. We complain about the Russians manipulating our beloved Facebook news feeds getting us to believe some nonsense that any 12 old year with common sense wouldn’t fall for. The fat from our McDonalds quarter pounders has seeped into our brains and made us functionally illiterate barely able to conduct our daily lives without help. So instead we look for a crutch – “the man in the white hat … riding in on the white horse.”

The most basic of human instincts is fear. And fear was the main reason Trump was elected … and now it has become an integral part of our society. We’re so scared we don’t even try to think whether the perceived threat is real. The prospect of the bogeyman under the bed dictates our daily decision-making. Trump and his GOP minions are portraying anyone and anything that isn’t white and god-fearing as being evil and out to take your job, your right to the American dream … and most importantly your guns.

America’s Cable News Democracy

“Nothing pains some people more than having to think.” – Dr. Martin Luther King Jr.

Politics is no longer something we participate in. It’s something we observe from our living room couch while watching whatever cable news channel we’ve become addicted to. We take sides with our television remote and go to battle on Facebook and Twitter slinging mud via anonymous usernames like @JesusLovesGuns. The actual work of civics and building of communities – we have no time for that. @JesusLovesGuns has too much work to do battling the hordes of teenage heathens out to impose their George Soros implanted communist mind control on us true patriots. God, guns and good old American whiteness … that’s what we’re here for. In the end though, we know the “big man” in the White House will do the real work for us … white hat and white horse right along with him.

After all, we’re American and we deserve it. We deserve it all. It’s our birthright. The government (even though we hate it) is here to ensure our American Dream – regardless what decisions we personally make. The idea we would band together and work ourselves to create something for the collective good – no that’s not how it works. We got the White House, the white hat and white horse.

Health and the Fallacy of Care

But our abdication of responsibilities doesn’t end with our misconstruct of civic duty. Maybe more impactful than America’s distorted opinion of democracy – is its view of health and the role we play in our own. We’ve elevated the profession of medicine to unhealthy levels. Most of us, no matter how intelligent we may be, seem to turn off our brains when in the presence of a doctor. And if it’s not bad enough that we stand there self-imposed intellectually naked – we’re rarely thrown a metaphorical robe … instead peppered with jargon and really, really big words designed only to intimidate us. Claustrophobic nondescript exam rooms, and accompanying clinical props create the psychological equivalent of an alligator-filled moat separating us from parity and any human aspects of the experience.

I don’t mean to be insinuating that physicians aren’t caring (most are) and empathetic (many are). Instead I want to bring to light the role of the ill-designed concept of Electronic Health Records. Fueling this physician/patient disconnect is the abomination otherwise know as EHR systems. These EHRs are billing software that have morphed into the central nervous system for the convergence between computer technology and healthcare. They are universally hated by practitioners, but the C-Suite continues to pile them on, oblivious to the detrimental effects they have on the health of the life blood of the their organizations – physicians. These EHR systems now dictate the parameters of the physician/patient relationship. It’s like physicians have given up and turned their careers and the healthcare industry over to the Boss Hoggs in the C-Suite. But the true losers are patients. Instead of ways to restore humanity to the healthcare process, all I hear are high-tech bells and whistles like AI, VR and blockchain. I’m as technical as anyone – but is the solution really to add more technology on top of a fundamentally flawed foundation to start with.

The technical solutions I see having have promise are related to patient engagement and collaboration, mainly communication-based behavior modification. But even here – imagination is lacking. Most firms seem to be focused on creating apps reminding us taking take our pills. It’s probably no surprise that the when discussing careers in healthcare, we say medicine. Instead of saying they were in medicine, imagine if a doctor said they were in the field well-being and self-efficacy enhancement. You’d tell them to take a pill.

I find it bizarre when it come to healthcare we feel the need for patient advocates. Do we have advocates for our experience at McDonalds or 7-Eleven? It’s not like we’re given our healthcare for free. On the contrary, the healthcare industry should have advocates to justify their unaccountable high prices. Unlike any other industry, we can’t describe ourselves as customers. It’s akin to blasphemy. Being a customer means we have a choice and that alters the balance of power. Whether intentional or not – the concept of patient subservience is baked into the healthcare model. In some cases it applies and needs to … but in most it’s purely a choice (or lack of) we make when we personally define what health and being healthy means to each of us.

I feel like we’re dogs walking around with leashes around our necks only there’s no one holding onto the other side. We just assume there is. In fact we just assume that’s someone holding onto the leash in most everything we do. In fact it’s so bad that we spend our days conforming to societal norms and expectations. We seldom think about where they came from or question whether they have relevance today. Conformity is what we strive for.

Locus of Control, Hobbes and Hume

In 1966, renowned behavioral scientist Julian Rotter developed the concept of locus of control – a variable that describes individual differences between people. Based on this concept, people vary in terms of the degree to which they have an internal locus of control (meaning that they believe that outcomes in their world follow from their personal actions) versus those who have an external locus of control (meaning that they believe that outcomes in their world are generally unrelated to their personal actions). If you have an internal locus of control, you are confident that your actions will lead to change. But if you have external locus of control, you might not even bother trying, because you have learned across your life that little follows from your actions. (Psychology Today)

This tradition of giving way to the external locus of control is rooted in the philosophies of Englishman Thomas Hobbes and his theory of social order. From his perspective, individual actors pursuing their own interests and trying to maximize their welfare lead inevitably to chaos and conflict. From that is derived the necessity of a single center of power imposing order. In Hobbes’ view, social order is the creation of the unique “Leviathan,” which wields the monopoly power to make and enforce law. Self-organized and independent individuals thus have nothing to do with making order. Most modern theories of “The State” have their origins in Hobbes’ vision of Leviathan.

Thomas Hobbes and his theories of the Leviathan have forged the foundation of industrialization. While at the time it seemed only applicable to the reverence of the church and royalty, it morphed once Adam Smith arrived in the 1700s. Even though Smith’s philosophy is the gospel of capitalism – his real message was much deeper and humane. To Smith, every business transaction is a moral challenge to see that both parties come out fairly. Unfortunately much of that message has been lost in transition or just discarded over the years for not fitting into greedy overlords’ predetermined agendas.

I suppose America can take solace in the fact that we’re not the only ones who choose to be subservient to a greater human power. In so-called industrial nations, industrialization isn’t necessary synonymous with being cerebrally evolved. In fact there’s a case to be made that industrialization has hindered our ability to make decisions for ourselves. Years of working for “the man” where “the man” makes our decisions for us; giving us long-term employment, health insurance and the such has cauterised our synapses – making us unable to forge the new cerebral pathways needed to function in a self-determinant society.

On the opposite end of the philosophical spectrum are the social constructs of 18th Century Scottish philosopher David Hume. Hume theorized that people are inherently good. What if rather than religiously following the philosophy of Thomas Hobbes (proponent of all-encompassing government) and his pessimistic views of humanity … we looked instead to Hume. He believed we were born with the virtues of benevolence, trust and commitment. This ‘spontaneous order’ did not need to be enforced by a greater overarching power or institution of human or theological making, but rather would individually and collectively be more efficient and ordered on its own. Hume’s argument was that, in the absence of a system of centralized command, conventions emerge that minimize conflict and organize social activities (including production) in a manner that is most conducive to the Good Life.

The No Fear Generation and Future of Healthcare

Let us not lose hope though. Even as us adults continue to fight over the toys in the toybox – the real adults in the room, our nation’s youth, all full of internal locus of control and self-efficacy, might actually be “the man in white hat on the white horse” riding in to save us. They don’t fear the system. They don’t expect the system to fix anything while they sit idly by. And they are not acting individually. They are taking the social media tools they’ve grown up with and are using them collectively as weapons to battle the unjust, inequitable system they see as functionally and morally wrong. Many call it a David and Goliath story – and that it may be. But because of their organizational and technical savvy, unbridled energy and intolerance of bullshit – today’s youth may actually be the Goliath. The status quo is walking dead and it doesn’t even know it.

The questions us adults should be asking ourselves is – how we be like the young and harness their sense of self-efficacy? How can we break free of the shackles that bind us to the couch as we get fatter and lazier pounding out keystrokes, parroting what we see in front of us on cable news.

While we could focus on the sad state of politics and civic engagement in this country – all that’s contingent on the more pressing issue of how do get and keep ourselves well. How do we decide that keeping ourselves physically, mentally and socially healthy is our responsibility – not of a healthcare system that we can all agree on is an operational disaster. And when we do – what steps must we take to set us on a path of self-efficacy and internal locus of control.

This internal locust of control needs to start with us by defining who each of us are and who we want to be. Then can we create an action plan to connect the two. This action plan is a road map for what I call our “Journey To Our Perfect World.” The emphasis is on the journey rather than the destination. Below are the ground rules for our new plan of self-actualization.

  • Our locus of control is internal: What we do as individuals matters to our health and well-being. We are not tools of fate. We understand many parties play a role – but we are the ones who have the greatest stake in the outcome of our actions. As a result; we may want to incorporate new ideas, additional players and new technologies to help us elevate our self-efficacy and improve outcomes.
  • We want collaboration: Our goal is positive health and well-being – and from whomever we choose to join us on this journey, we expect to work together collaboratively (including physicians, stakeholders, other friends and family and even fellow community members).
  • We are customers: At times we may be patients, some of us more and longer than others – but in the end, we’re still customers. And with being a customer comes choice, a choice that is ours.
  • Our community is an integral part of the solution: Not only do our own actions dictate the level of our health – so do our interactions with those around us where we live. We are products of our communities and the level of health is dependent on the engagements we have. The healthier and stronger our communities are – healthier and stronger we will be individually.


The Journey To Our Perfect World: The Map

  • Overview and Assessment:
    • Where do I want to go and when do I want to get there (personally and professionally)
    • Where have I been (personally and professionally)
    • Where I am now (personally and professionally)
  • Resources:
    • What do I need to go where I want to go (personally, from others)
    • What do I currently have
    • What do I need that I don’t current have and where can I get it


How can we demand the healthcare model I described above – one where we’re at the center of the process? How can we demand that our doctors and healthcare providers view us as true collaborators? How do we break the nonsensical cycle of unnecessarily procedures, appointments and tests that produce little benefit and only further perpetuate the inefficiencies of the status quo? How can we break the norm of thinking that our health begins and ends at the clinic walls? And how can we get our healthcare providers to see the community as integral part of our health and in turn use their power and financial resources to make it better?

In the end, it will be up to us to organize like David Hogg, Emma Gonzales, Jaclyn Corin and Cameron Kasky. Even though their cause is gun control … we can learn from them and the other young empowered leaders of the #neveragain movement. The healthcare industry won’t change on its own. It will have to be forced to – screaming and yelling … and throwing up unimaginable obstacles along the way . But we have power in numbers … and our numbers can speak truth to power … if we only dare.

We just need to keep screaming … and may we have half the insight, passion and courage Jaclyn does.


See Community 3.0 for your prescription for speaking truth to power by organizing your towns and cities around the Front Porches of your community by elevating the health and well-being of you, your neighbors and friends.


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An Open Letter to Healthcare’s C-Suite

I didn’t think I was going write anything more about my cancer experience – at least in the near term. I’m just kind of done with it. I finished my chemo and now I have to conjure up whatever “mind over matter ninja magic” I can to keep it at bay for the foreseeable future. My next blood test is in a couple of weeks and we’ll see how things are, but I don’t anticipate anything negative. Even with a positive result – that’s no prediction of the longer-term though. I didn’t think I’d have to go back through this two years ago after the last set of infusions in 2015. But I did. So now I’m realistic. I’ll do everything in my power and that’ll have to be enough.

This year has been anything but fun. Cancer is just one part of it. Living in a world with Donald Trump, Mitch McConnell and Paul Ryan having anything to do with my well-being has me in constant state chemo-aided anger. My resistance to nonsense is at an all time low. For all my talk of self-efficacy, mine also often wains. Enough of this though. I’m still an optimist and I have to look at 2017 as just another one of those pothole ridden stretches of road to my Perfect World. It’ll get smoother.

What I do want to do is take one last stab (at least for the foreseeable future) at turning this experience into a positive for other people who may be going through something similar as I am. And selfishly so … maybe it’ll help me too.


This is my Open Letter to all those who are tasked, or have made it their profession to be part of our worlds during these precarious times of health we face.

I’ve come to realize that few people outside the “I have or have had cancer” club really have any idea of what the experience is actually like. I assumed the doctors, nurses and administrators in the exalted cancer centers of our community-dominating clinics would. I assumed once you walked past the donor walls you were given membership to some secret society where every one was in the know, empathetic and waiting to literally and figuratively take you by the hand as you waded into the deep end of this murky physical and emotional pool. Such is not the case. Having a life-threatening, debilitating disease or not … we’re all thrust into to the same malaise of issues plaguing healthcare in America. Just because hundreds of thousand of dollars and thousands of lost hours of patient productivity are siphoned through the system – we’re all relegated to the same level treatment and customer service. It’s the same experience for everyone. Obviously I’m naive to think it would have been different.

As response to my personal frustration, I have vented over the couple of years through my blog. I’m not going to rehash the content I wrote now. The links are below if you want to yourself. And it wasn’t that things went so bad, even though the chemo treatment didn’t hold the first time and within two years I was back in again for another six month regiment. And it wasn’t any one person. For the most part, the people involved in the treatment regime did what they were tasked with. They did their job. But maybe that’s the problem. My idea of what their job should be and what it is as defined by their employer, my healthcare provider, are two completely different things.

Maybe my problem is that I’m idealistic and see things how they can be, not just how they are adhering to the crippling paralysis of the status quo of diminished expectations. Maybe I’m just not tolerant of organizations who don’t make it their mission to first set the bar as high as they can for the customer. Maybe I just don’t get what health means in the context of a healthcare provider.

We live in world infected with silos. And I don’t mean silos that hold corn and wheat. The obsession with specialization and being an expert has been thrust upon us for decades now. And it shows no signs of letting up. And nowhere is this more epidemic than in the medical field. Did you notice I didn’t say health field. When specialization enters the discussion, the two are not necessarily synonymous. For example:

Many young American surgeons have a strong desire to do humanitarian work overseas. But their good intentions usually don’t match up with the skills, such as performing cesarean section deliveries and fixing broken bones, that they’ll need in poor countries. But only 0.1 percent of general surgery residents in the study had been trained to do a C-section. Yet it’s the most commonly performed surgical procedure in MSF projects.

The skills necessary for work in the developing world used to be universally taught in American surgical rotations. But training has changed to reflect increasing specialization. (NPR)

I assumed when I descended down the rabbit hole of a cancer diagnosis I would be enlisted in a collaborative effort to battle this condition. I assumed we’d have discussions about the role I would be expected to play over the next few months during treatment and afterward. I assumed we’d talk about how I could support the efforts of my doctors for my benefit. I assumed we’d have discussions on diet, exercise and mental issues as well as the physical ones. I assumed we’d talk about my life in the real world and the effect the cancer would have on those around me – those expected to provide help as well as those I’m currently providing help to.

I assumed there would be a “we.”

There is no “we.” There was no talk of my life outside the walls of the hallowed halls of the cancer center. Obviously my treatment ends at the bottom on the computer screen containing the results of my latest blood panel. Every doctor visit or infusion session began the same way: “Any pain?” My answer was pretty much the same every time: “No, but I have chemo brain, I’m tired and I have thermometer as my constant dance partner.” But since my answer didn’t reference to the pain question and wasn’t in the affirmative: it was brushed aside. It didn’t fit into the boxes on the EHR software that operates as the equivalent of a malignant shadow government in most healthcare providers. The interface design of Epic and its competitors covertly dictate our relationships with our doctors, PAs and nurses.

Well, I hope my journey of “Any pain?” questions has come to an end, at least for now. So anything that may come from any of this post will be for the benefit for those that follow me. And I’m good with that. That being said, this is my letter to those in charge of our healthcare system in this country – the ones that run the clinics with the walls filled with donor boards.

First, quit reflexively calling yourself healthcare providers. This is a title that is earned. Most of you are human body repair shops. Nothing more, nothing less. If something breaks, hopefully you’ll fix it after the fact. At least when it comes to our cars they instill the importance of changing oil and taking other preventive measures. In the six years of attending doctors appointments for either myself or my two elderly parents, not once has the questions of diet, exercise or cognitive stimulation been brought up. What’s the hell is up with that!

It’s bad enough these foundational health and well-being issues aren’t being stressed with my parents, but you’d think they would be with me being a cancer patient and facing the ravishing effects of not only the disease but also the chemotherapy has on me. Shouldn’t there be a concerted effort to attack this with all resources available – especially ones that I may be able to bring to the game. I consider myself pretty tuned into my body and mind and work hard on my self-efficacy. I firmly believe what I do will make a difference in my outcome in battling cancer. I’m not going to sit idly by and think the only component to my success is administered through an IV on the fourth floor of the Billings Clinic infusion center. But what about the other cancer patients who have only blind faith in the bag of chemicals? Will they do anything for themselves to help out their own prognosis? This disease that we’re living with is not yours – it’s ours. We have to be involved in our own future. Our parents and grandparents may have been content with turning over the prognosis of their future to you – but we’re not. This is a collaborative effort and if you as both physicians and the institutions you run aren’t prepared to accept that, relinquish some of the control … get the hell out of the business and make way for some that will. 

And another thing, don’t treat us like victims. We have lives to live that transcend our disease so don’t lump together as just survivors. Survivors are those stakeholders who have lost a loved one. We don’t have any time to relish in the fact that we are still alive. We’re too busy trying to live. And believe it or not, our lives take place outside the walls of where your paycheck comes from. 

If you want to truly deserve the name, “healthcare provider,” come to grips that health means more than what you do for us in your clinic. Get past the body repair shop mentality. If you really want to raise the bar; take a walk around your community, and not just the gated one you live in. Take a walk around the streets where those people who have entrusted their lives with you live. Do you like what you see? Do you see enough parks and places to walk? Do you see playgrounds filled with kids afterschool? Do you see a farmers market down the street from where you park your BMW; or a farmers market where a cancer patient like myself can use a prescription for fresh produce? Do you see opportunities for children and the elderly to serendipitously interact with each other … exchanging stories and dreams; of the past, present and future?

My definition of health is being able to pursue the life I want to live and having an environment that is conducive to it. If my healthcare provider wants to consider itself one in more than just name on a letterhead, it has to lead the charge in the community to make this definition a reality. Not everyone is in perfect shape, especially people who have recently gone through what I have. Help us make pursuing a good life, or at least a decent one – one that doesn’t involve massive stakeholder preparation or driving endlessly a monumental undertaking. Physical serendipity and engagement is our friend … if not our salvation. A healthcare provider most often has more community clout on several levels than any other entity. You have the stage – use it. If you’re not going to … pack up and make way for someone who will!

I’m sure a lot of you will brag about all the wonderful things you’re doing for the community. Invariably most all have to do with building stuff though. Ribbon-cutting ceremonies generate big press, big donations, names on big buildings and more names on big donor walls. And if it’s not shovels in the ground – it’s technology. A plethora of accounts on my Twitter feed are salivating over artificial intelligence and its possible effects on the healthcare field. But it seems like healthcare is a zero sum game. The more money spent on buildings being built and technology being put in play, the less on human interaction. Investing in caring for people as people is nebulous and hard to quantify going out and especially hard obliquitously coming back around.

Salutogenesis, Engagement and Self-Efficacy

Salutogenesis is a term coined by Aaron Antonovsky, a former professor of medical sociology in the United States. The term describes an approach focusing on factors that support human health and well-being, rather than on factors that cause disease (pathogenesis). More specifically, the “salutogenic model” is concerned with the relationship between health, stress, and coping. Antonovsky’s theories reject the “traditional medical-model dichotomy separating health and illness”. He described the relationship as a continuous variable, what he called the “health-ease versus dis-ease continuum.”

In 2008 Scotland, specifically Chief Medical Officer Sir Harry Burns, adopted salutogenesis as national public health policy. Burns helped Scotland conceptualize health improvement differently, being aware that the small gains that resulted from a range of interventions can add up to produce significant overall improvements. Much of these interventions were and are aimed at empowering the populace through engagement with their own health outcomes.

Engagement creates agency and self-efficacy. Self-efficacy is defined as the extent or strength one believes in their own ability to complete tasks and reach goals. The more a person believes their actions will help their situation, the more likely they are to try. The more a person does, the more they’re likely to do. And the more they do, the more they feel what they’re doing is helping … creating a cascade of positive results and well-being. And at the center of this is engagement, whether it be personally, socially or civically.

Isolation And Our Nation’s Declining Health

A report came out last week that generated a tsunami of follow-up articles. Julianne Holt-Lunstad from Brigham Young University presented the results of two large meta-analyses on the connection between loneliness and premature mortality at the 125th Annual Convention of the American Psychological Association. 

“There is robust evidence that social isolation and loneliness significantly increase risk for premature mortality, and the magnitude of the risk exceeds that of many leading health indicators,” Extracting data on things like social relationships, health status, pre-existing conditions and causes of mortality, the team was able to quantify a difference between socially isolated people and those with stronger relationships. Those with strong social relationships were 50 percent more likely to survive longer than those who were isolated. 

“The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity),” they write in the study.”

Being alone, often due to declining marriage rates and fewer children, is literally killing us. We don’t engage with each anymore. Not only have our communities not compensated for these changing demographics – suburban sprawl and the invasion of box stores has added to the problem. The neighborhoods America has always relied on for social support have become the exception not the norm. Rather than walk down to the local park and feed the squirrels or play chess under the oak by the playground – our isolated senior citizens watch Fox News hours on end. And not just our senior citizens, it’s anyone facing months or years of chemotherapy or similar treatment. Have we been relegated to lives of polarizing cable news ideologies or driving to Walmart?


Well-being, Hope, Role of the Healthcare Provider

“I believe that the community – in the fullest sense: a place and all its creatures – is the smallest unit of health and that to speak of the health of an isolated individual is a  contradiction in terms.” Wendell Berry

What if we designed our communities around the idea of maximizing engagement. The more engaged our residents are … the more empowered they are and feel they are more in control of their health and their futures. Imagine if a chance to engage, whether it was physical, mental or social was just around the corner. And what if opportunities to help others realize the same were part of the fabric our daily lives. And imagine if our storied healthcare providers felt their mission and their duty to be at the forefront of this effort.

What if engagement and well-being was how a community measured itself, not obtuse economic activity often distorted through the one-dimensional filter of irrelevant statistics. What if we fixated on what we “could,” rather than what we “can’t.” And what if getting up in the morning was a chance to nurture our hope … and engage with other to help them do the same. And again what if at the center of this new enlightened measurement were those allegedly in the business of keeping us healthy. Then maybe they would truly deserve the words on their letterhead.

Life doesn’t have to suck just because you have cancer, have any other hardcore disease – or are just getting old. But it sure can be if the so-called leaders of our communities, especially the ones perched in the ivory towers of storied healthcare providers, don’t step up and help us out.

We need you to lobby for our communities to be places that prioritize people and engagement – not cars and box stores. We need you take some of the money you don’t pay in taxes and invest it in community gardens, farmers markets and street fairs that showcase local art that encourage creative engagement. We need you to lead the way on healthy eating by including cooking and nutrition as an integral part of our treatment. And while you’re at it – include our stakeholders. We need you to be advocates for engagement and “getting out of the house.” Communities that encourage something as simple as allowing dogs in parks will boost their residents’ collective health and well-being.

We need you to reach out to us with transportation, especially when we live more than an hour away. I’d like to see how many CEOs go through a ten-hour chemo infusion session only to drive themselves an hour home to two elderly parents and a life of a caregiver … like me. Probably not many. The life of a cancer patient is seldom one of a giving extended family waiting at the beck and call. Often it’s flipped. Cancer affects anyone and everyone … regardless of the burden of their obligations and responsibilities.

We need you to be vocal when you see politicians and government not doing what they should to improve the human condition of our communities. You should be a regular contributor in the OpEd section of the newspaper. You can’t hide behind the nonpartisan label just because you’re afraid of losing a few ideological wayward customers. Losing them is nothing compared to losing your integrity and human decency. And believe it – there is people out there like me, who can write just as well, who will call you on it … publicly.

Most of all we need you to use your stage for us – not just for the construction workers and contractors you hire to build your buildings. I always say that there are few things worse than being rewarded with a stage, a platform to make a difference – and doing nothing with it. People’s time and attention is the one thing that is scarce and money can’t buy more of it. To squander it is criminal. People not only listen to their doctors and healthcare provider – they often don’t act for their own well-being unless given the go-ahead by them. This is a responsibility you personally shoulder, whether you like it or not. If you’re not up to the job … there are other ways to pay for that BMW. Or even more so … you can trade it in for a Taurus.


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Life during Trump, Part 1: “Recognizing the Problem”

“The mind…can make a heaven of hell, a hell of heaven.” ― John Milton

It’s hard for people to empathize with you when you’re going through chemo. I’m not looking for sympathy and I’m not saying people don’t try. It’s just one of those tough subjects. There’s always that specter of death that hangs over the conversation. This possible prognosis, correct or not –  supersedes any discussion of “how you’re doing.”

It’s hard to explain that things just change. And it’s more than just physically. The nausea gets all the attention, But that’s never been an issue with me. It’s a lot more than that. My senses has changed. I don’t smell, or hear, or taste or see like I used. Whether or not they’ll come back  remains to be seen. After my first “rodeo” my senses recovered some, but not entirely. And I’m sure with this latest group of treatments (I hate that term) this sensory wet blanket that I’m dragging around will probably be my new companion for the foreseeable future. Linus has nothing on me.

Mainly what people can’t understand is the mental changes that occur. I guessing it’s not unlike what PTSD sufferers deal with. Around every corner, there’s a trigger that can set off a memory that’ll send you into reactionary tailspin. In a wonderful book by Debbie Hampton, she re-accounts her recover from a suicide attempt where she injected over 90 pills. She literally fried her brain. It was so damaged she had to relearn how to live and with that her impulse control was severely impacted. Because of her frequent outbursts, her friends and family such had hard time dealing with it many just stayed away – including her mother. She had to rebuild her life mentally and physically, block by block, encumbered by this new uninhibited broken brain as its foundation.

By no means am I dealing with anything like what Debbie did, or probably still is. But I do get the brain change thing as my patience and tolerance level has been affected … big time. My world has triggers everywhere now. Most of time we go through life and just let irritating things pass us by without much notice – at least not letting it affect us. Such is not the case with me since chemo has fried my brain. I like to describe it like an archipelago. During normal tide, only a few of the islands are visible. But now I’m in a constant state of low tide. Everything is visible and everything affects me.

All this being said … it bring us to the insane asylum on the east coast, better know as Washington D.C. What’s happening in our political wasteland is having a big effect on me right now – culminating with the latest antics of the Republican Congress and the clown boy in the White House. For many the healthcare legislation ramrodded through the House by Paul Ryan is nothing short of a bus hitting us. I try to get my head around all of it and inject some reason into their decision making process – but I can’t. The group think that has reared its grotesque head is a modern-day tulip mania of Sherman’s March to the Sea (how’s that for a mixed metaphor). The insane mindset that has taken over this party is completely void of any compassion, empathy or even basic humanity. The days of Bob Dole and even Ronald Reagan are long dead. The zombie that has taken its place bares little resemblance.

Unfortunately I can’t just turn off the television, quit looking at my Twitter stream or let my newspapers pile up on the front porch and wait for it to all go away. I’m front and center on the preexisting condition issue. If all this comes to fruition (as in the poison fruit), I’ll be at the mercy of my greedy insurance company. Combine this with the crazy state my brain is in right now, and I’m spending time figuring how to stockpile and freeze chemo drugs from my current treatment sessions while I’m still covered – to be used if I need them in the future, if (more probable when) my insurance company drops me or prices me out of the market. Welcome to life in Montana, land of cowboys, guns and extremely limited healthcare options. I have to constantly remind myself of the John Milton quote, “The mind can make heaven of hell or hell of heaven,” to keep from digressing into obsession.

The man on the white horse, the man in the white hat … well, neither one of them are coming.

Running of Trump’s Lemmings

Regardless of my personal situation or more accurately, my perception of it … we can’t dismiss reality. If the picture couldn’t get any clearer – looking to these clowns in political zuit suits for the answer is pure insanity. Even someone with chemo brain can tell you that. Yet Trump supporters still support him and Republicans are, and probably will always be Republicans.

But not to be left out of the delusion soiree, Democrats still think that if they put someone of theirs in the White House, the federal government will magically become a bastion of implementation prowess. Regardless of who sits in the Oval Office – our country’s, and more importantly our individual problems will not be fixed.

Last Thursday night, I had very disheartening conversation with my daughter. Now Alex is a bright young woman in the midst of a very successful career with tours of duty at Apple and Amazon. She is grounded and informed, but her logical mind is having a very hard time understanding how this country, one that she has always felt even in times of craziness – will do the right thing. But after Thursday, those assumptions have been shattered. For her it was like realizing there’s no Santa Claus. With the this healthcare legislation, the Republicans have not just targeted the “outsiders” – but rather the very people who worship them and put them in power. The level betray is unprecedented. At least Hitler didn’t kill the Germans he viewed (in his demented mind) to be his true countrymen.

It’s safe to say “we the people” are on our own. We can only hope we have enough resolve individually and collectively to fend off the daily assaults waged on us by those we’ve entrusted to look after our interests. May today be the day we take our institutional naivete′ and bury it with the illusions of Santa Claus and the blanket we slept with when we were two years old.

Since Trump has taken the reigns as leader of the free world (theres’s so much wrong using those words together in one sentence), the mental health industry has seen a dramatic rise is suicide calls and psychiatric activity. Bluntly speaking, people are depressed. Normally optimistic people are seeing their world view might have been based on flawed assumptions.

Personally I’m not ready to throw in the towel on humanity. I’m still an ardent believer in David Hume’s philosophical premise that people are intrinsically good – not that of Thomas Hobbes and the need for a Leviathan overlord. I believe we just need to reset our social and civic perspective. No white anything, hat nor horse, is going to pay our house payment or make us healthy. That is up to us. The sooner we admit to this, like the alcoholic or the ten a hydrocodone a day housewife – the sooner we can get onto fixing what needs to be fixed.

Self-Efficacy and the Road to Recovery

In the past I’ve been accused of assuming people have too much control over their own destinies. Upbringing, environment, genetics or even belief in a higher being I’m often told are the determining factors – no matter what their own efforts. If you’re not white, probably male and connected – the deck is stacked against you. Getting dealt a “bad hand” is grounds for government intervention and assistance. Most recently, the in vogue means of this assistance is basic income – getting paid for basically existing and being a member of society. I’m all for the betterment of all people. Anyone who knows me or has read any of my 200+ posts on this blog will attest to that. In fact, that’s probably the one common tenet that runs through the entire site. That being said, I can’t believe a reward with no incentive to accomplish anything is the best way to achieve it.

Shouldn’t the road to our Perfect World be paved with the something that will produce a longer-lasting effect than just a monthly sustenance? Shouldn’t we base our societal actions around the assumption if we better ourselves good things will come for both us and those around us? It’s the “giving a man a fish vs. teaching him how to fish” thing in the Bible. And I don’t believe this is even a political issue anymore. Regardless of your ideological affiliation, relying on the government (or any other institution for that matter) to actually deliver is naive at best.

Shouldn’t we strive to create communities and social constructs that move us in a direction that empowers people? Shouldn’t we be teaching people how to fish – working with them to obtain the physical, mental and social tools they’ll need to not just persist, but flourish on a long-term basis? At the core of this empowerment is building a communal sense of self-efficacy.

Self-efficacy is defined as the extent or strength one believes in their own ability to complete tasks and reach goals. The more a person believes their actions will help their situation, the more likely they are to try. The key is to “get the ball rolling” by nudging activity and engagement – personally, socially and civically. The more a person does, the more they’re likely to do. And the more they do, the more they feel what they’re doing is helping … creating a cascade of positive results and well-being.

In America there is little effort put into getting people to engage directly with their health and personal well-being on the part of the established healthcare industry. Maybe providers are reluctant to relinquish control. Maybe it’s they just can’t be bothered. Regardless, the country lives by a healthcare methodology of reaction and “fixing things” … not proaction and “maintaining things.” It’s no big stretch to believe that transferring some of the responsibility for our own health to the ourselves will prove beneficial to us. And it’s not just focusing on the physical that creates impact. Developing one’s mental acuity is not unlike getting into physical shape. Having a stronger mind is the key to having better resolve and making better decisions in the first place. And schools should not have exclusive rights to that. Opportunities to learn and strengthen our minds are all around us all the time. We need to engage with our surroundings (people, places and things) to take realize the benefit though.

We can’t leave out the social component of well-being either. Using altruism and benevolence as a cornerstone by doing good things for others takes your mind off of your own ailments and gives you purpose. And even if you can’t actively participate in hands-on volunteer projects, you can at least feel you part of the solution by experiencing the joy of giving vicariously through passive attendance and moral support.

What we need is not a society where we look to institutions for the answers – whether it be the government, the healthcare industry or any other. We spend all our time and energy arguing over which institution and which version or it is best for us. And even if we agree, we never even discuss whether our interests are best served by any institution. The thought of responsibility and by association, self-efficacy, is too often mis-interrepted and dismissed as heartless libertarianism. While the personal responsibility calling can go a bit far … so can and has the leviathan of the institutional overlord. 

We need to resist the extremes. Full-on libertarianism isn’t the answer anymore than being beholden to the keeper of the keys of the Ivory Tower. We need to decentralize and deconstruct our current support structure but yet be vulnerable enough to depend on our neighbors and communities. We need to reach out and grab those close to us where we live and help … and allow ourselves to be helped. To do that, we need to engage. And the perfect model for this type of engagement may be only as far as our backyards.

Part 2 will take us into the “life of plants” and how patterning our lives around a model of engagement designed after a rhizome root structure found in our backyards might be the solution to the personal, civic and political malaise we’re presently immersed in. Out on May 16.

If you’re interested in moving on from the status quo that will inevitably take anyone and anything down with it … please check out Community 3.0, my vision of an evolved society where self-efficacy and the well-being of the populace is priority. Or even better email me, at and we can set up time to have a conversation.


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