Why the Focus on Personal, Experiential Care? The n=1 Manifesto

"...to classify as a puzzle, a problem must be characterized by more than an assured solution."

- Thomas Kuhn, "The Structure of Scientific Revolutions"

If there's one thing I could shout from a patient perspective next year - it would be this:

I want to be a "
live node in the network" (slide 5/51 by mingyeow, on Slideshare).

And I want that node to carry more weight via its connections than via a rogue satellite orbit.

Disclaimer 1: This is a necessarily selfish orientation - because while I can posit what other e-patients will think of that statement, I can in no way guarantee the majority (or even many) feel the same way.

Disclaimer 2: In addition, I can't speak for other patient orientations - as a 'live node' in the medical network, my data transmission may be either voluntary (willingly given during a conversation with a doc or via consent to testing/treatment) or involuntary (incapacitated or unwilling, via testing while unconscious for example).

Patients may convey information verbally or physically or both, via spoken or typed responses to an H&P interview or via lab and test results, etc.

In this post I specifically address the portion of data that is shared verbally, at will, by the patient, during conversations with a provider.

Disclaimer 3: The background, generative interactions that inspired this post happened in a combination of real-world settings (Medicine 2.0, Health 2.0, Geek Tech Brunch, Clinovations, Ignite Boulder) and online conversations (mostly on Twitter - god love that 140-character channel and tinyurl.com).

With the political climate focused, at least superficially as Dr. Stanley Feld notes, on generating input for PE Obama's incoming administration and subsequent healthcare reform efforts, we have a chance to pulse that live node for all it's worth.

It's a kind of 'nowtopia' for healthcare.
It's called engagement (micro and macro). And some e-patients are ready for it. So are some physicians.

Why does any of this matter? How can a study the size of an individual hold any populational or systemic relevance?

One limited perspective is that there is NO populational impact for healthcare that does not germinate in the personal.

For the purposes of this post, I'll argue from this perspective.

Even when we vaccinate to protect against this season's latest strain(s) of flu, we begin one shot, one person at a time. The most important and also most difficult decisions in the healthcare delivery system are also n=1. Death is individual. Deciding how you want to prepare for death (or if you do at all) is a highly personal choice - but one that should be discussed more often.

This is, to some extent, also very much about control/choice-aware care, or the lack of it in our current system.

Let's gallop ahead to an example where individual control of healthcare decisions are swept out of our hands. Say a government decides to perform secret medical testing on a population, and administers a 'treatment.' At some point, it IS a decision left to an individual to authorize. n=1. For better or worse.

I'm not arguing for 'snake oil' sales pitches or anecdotes in leiu of science. Smooth talkers (and adept marketers) abound in any industry, and healthcare is no exception. But we need a sentient approach to conversations in addition to more rigorous scientific exploration of concepts.

n=1 care isn't about 'in leiu of' - it's additive rather than reductive. It's about a coalescence of all available resources in the healthcare system pushing towards a ripeness, nearer to 99.995 percent utilization.

Docs are time limited and resource strapped. Patients need to bear some of the burden for effective resource utilization. This means acknowledging and recognizing a nuclear, patient-centric orientation, with incorporation of subjective, experiential data, is absolutely necessary from the offset.

Patients: It means not messing around when that doc enters the room. It means putting down your magazine, holstering your Blackberry/iPhone, and being ready to share questions and concerns.

What are your fears? What are you feeling? Why are you there? What background knowledge and perceptions about what's happened bring you to seek care? That's vital patient knowledge.

And patient knowledge is being wasted.

Experiential, subjective, n=1 knowledge is the most vastly underutilized human capital in the healthcare system. And what do we call an asset we're not using? A frakkin' waste.

Or is treating patients one at a time a "wasting asset?" (thanks to @sjdmd for the link and quote).

The patient's narrative counts for something during a history and physical. But what about after that?

Don't listen to this blogger, who is undoubtedly tarnished by an association with all things -wide eyed and wonderful related to Health 2.0 (despite the fact that I've also been an active interrogator of companies, and the movement, from the outset).

This is a call to action. Form your own hypothesis. Use informatics. Do a study on it (or 20). Prove your point. Or disprove it. Use methodologies valued objectively for their statistical and quantitative outputs.

And lest you think my focus on n=1 here indicates a blind eye turned to larger, more statistically/population relevant studies, please understand one thing: the fact that I don't regularly (and personally) run the numbers doesn't mean I don't highly value this kind of n>100 analysis, it just means I don't have a natural talent for it, nor a learned skill.

I'll leave it to those with more informatics experience, appropriately so - to produce good, juicy data sets.

Back to n=1.

We are always looking for services that help us create meaningful connections, whether it's an oil change or a knee replacement.

It's a question of fixing systemic functionality in an individual context, whether that helps me drive safely over the hill and through the woods to Grandma's house for Christmas or kick ass on my next golf game while skipping along the path to all 18 holes.

Healthcare is no exception.

In fact, in healthcare 'meaningful' connections take on a whole new contextual meaning. And here lies the serious opportunity for serious (#sarcasm) scientists - too connect this new contextual meaning with relevant online/offline analytic data and personal, n=1 subjective me-trics.

We are in the midst of a scientific revolution in healthcare, or we would be if scientists (both amateur and professional) would get off their a*& and work at connecting these disparate theories.

If that's not enough, oh scientists shouting into the void for funding - this is a hot area. Read: $$$. Grants! Population studies!

To focus on the aggregate, however, we must first focus on the personal. Communities behave differently than individuals, and of which are we more afeared in health? My compliments and complaints about healthcare? Or my social network, n=35k strong, complaining about 2 mins with our primary care physicians?

I'm going to take some flak for this one for sure, but check out the relationship between characters played by Morgan Freeman and Jack Nicholson in the boomer hit "The Bucket List." The two men bond, kudzu-tight, over a patient experience.

While few patients I know of have the good fortune to meet up with a wealthy co-sufferer who funds their every impossible dream before death, the vital import of connectivity and companionship, and the revision of personal identity in the face of patienthood, is a subject, surprisingly valued in the movie, that we've shunned for too long.

These are n=1 questions: Who am I? Who am I with an illness or injury? What identity do I want to keep?

Becoming a patient forces a personal reformation that has the chance to become either your Great Enlightenment or your Dark Ages. The resources and connections you utilize may influence choice in either direction.

HIT, eHealth, mHealth, Health 2.0, HoIP - all these 'movements,' conferences, and subsectors are, at the most basic substrate level, helping consumers (whether patients or providers or purchasers in the form of pharma or insurance) devoted to scanning the system to create additional enmeshed connections where opportunity doesn't fall through the cracks.

Another perspective: Only an n=1 system allows us to close distances between people and resources in the system needed to enact change.

Separation, or a feeling of isolation, is the enemy of healing and also the enemy of healthcare reform. Jacqueline Fackeldey, typically, has it right ahead of the rest of us - this is about human to human. Hotealthcare, she calls it.

Anything bigger and we hit the reform-wall equivalent of 'one day at a time' - we won't be able to push our own boundaries past systemic obstacles to envision, must less enact, improvements. Doc Searls theory of The Big Zero is a must-read here. Doc posits that nothing in a zero needs improvement.

But we already have a superorganism in the healthcare system - a self-contained unit of knowledge and experience that has multiple datastreams related to individual illness and injury. It's the patient.

Patient-knowledge is literally transcribed on the body, in multiple dimensions. Three small theoretical examples:

1. Mind
2. Heart
3. Body

Why are we afraid of a one-at-a-time orientation in healthcare? It forces us to be present with the person, rather than the process. It's about dialogue combined with diagnosis. Neither supersedes the other in an n=1 orientation.

But n=1 is powerful for more important reasons. It means when we ask about fears and dreams, what we want to do if and when we heal (and what specific clinical treatment pathway we choose as a result) - we will hear very difficult things. Things like a fear of death. Things like the fear of failure. Things like having to say: "I'm sorry. I cannot save you."

We start from a fundamental disconnect in the healthcare delivery system.

There are only two absolutes in life. First, you are born. Congratulations, since, if you're reading this blog, that's already happened (Happy belated birthday). Second, you will die.

Everything in between is negotiable-at least until we get way further along with predictive genomics and genoanthropology.

When we start out at the top 3 of Maslow's heirachy of needs - once safety is relatively stable, we're looking ahead to belongingness, esteem, and self-actualization.

But there are some marked benefits to exploring an n=1 orientation.

For one, user-centric design in the healthcare setting with an n=1 focus brings more benefit to designing 'lightweight interactions' or those that make it easy for users to contribute. Ted Eytan and Carlos Rizo have suggested various uses for Twitter in the hospital setting, including a pre-op waiting room 'time capsule' and alarms linked to playlists rather than machine sounds, which then Tweet your current song.

Life is increasingly lived via an in-the-moment orientation. n=1 orientation can help smooth the psych barriers that living in this constant magmal flow of information cause.

Set aside for a minute good/bad - this means archiving will be a top priority, and opportunity, and then data analytics/informatics that let us monitor and reflect upon individual trends in societal/self-appointed group context will be big challenge (me-trics).

I'm not advocating for anarchy here - or complete and total divisive rebellion where n=1's band together to become n>1 and take over existing organizational orientations. Rather those of us who are working to be small splinters of reform are moving forward towards a more holistic integration of n=1 tech into the healthcare provision and delivery system.

Again, I am not arguing for snake oil in leiu of science. A bivalve approach is what's needed in healthcare - valuation and integration of both subjective, personal, patient-contributed n=1 knowledge, and objective, clinical, provider-issued n>1 determinants.

Personal, subjective, anecdotal and population, clinical, scientific, statistical - they both have roles to play in healthcare. To negate either is to perpetuate a myth that the practice of medicine occurs in a clinically effective void where all is efficient and antiseptic. It does not. Medicine is not delivered in a neutral, homeostatically perfect envelope.

Its delivery, BY and TO the human element, means anecdotal data is constantly computing in a never-ending stream. And this data does have value.

But to mine that value we must have n=1M, n=1ook, n=300, n=30, n-1. Large scale AND small scale studies.

This is the reason, anecdotally speaking, that I'm personally and professionally involved in both the Health 2.0 and Medicine 2.0 communities, in addition to various others. I am defined wholly by NEITHER.

I am a composite. As is each person, as is each patient, as is each physician, as is each treatment plan. A compendium of experiential knowledge combined with more statistical rationale.

I am a member of many, many groups, but my identity is not subsumed by my membership in any, or in the aggregate. Group identities allow us to lay claim to bits and patchwork pieces that help us formulate more robust self-images, which we then refract to the wider world via social media.

Social media, for better or worse, allows some control (real? illusory? both?) over the identities we portray. There is something disturbingly powerful, potentially dangerous, and wonderously cathartic in this. And in the sharing of individual patient experiences and personal medical knowledge via these lenses.

And if you believe my anecdote has no value because I haven't done a study of Hawkins IV talar fractures and subsequent operative/therapeutic recovery patterns and efficacy, if you believe my anecdote has no value because I haven't looked larger than n=1 , consider this...

There is a reason I don't do these studies. That is not where my strengths lie. Would I be capable of doing them? Probably not. With guidance? Perhaps. With collaboration? Yes. With additional mentoring? Sure. You see where I'm going with this.

N=1 isn't an end-destination for healthcare innovation. No one person embodies the knowledge needed to move forward. But it is a starting point. A growth medium.

N=1 experience needs to be additive before it can become exponential. Patient (n=1) + Physican (n=1) and all of a sudden you have a larger N. N+N2 and things begin to multiply. Utility becomes multiplicative.

Here's the thing - anecdotally. Medicine is statistical. Health is statistical. Life beyond vital signs, however, the sharing of experiences in health and medicine, is anecdotal.

Medicine, health, as practical applications, as care delivery, as lines of research, are indivisble from the pursuit of LIFE. This debate is indicative of a larger failure we share (scientific, academic, Health 2.0, etc) to value integration and utilization of "n=1." The subjective. The anecdotal.

It is turning a blind eye (or n=1) to the fact that clinical, and thus statistical efficacy of care delivery, is influenced by individual interactions between patient and provider. That patient emotions, and, gasp, decisions, may be based in part on our relationships with our doctors, which are very n=1.

But don't take my word for it. This is purely anecdotal evidence. Which isn't evidence at all. It's opinion. Just an opinion. But one last thought - why is it that during an exam we begin with the anecdotal H&P?

If we're constantly trying to divide patients out of the equation we're wasting precious energy for a needlessly reductionary exercise.

Stop wasting so much energy on trying to keep patients 'out' and we'll begin to reexamine/redesign the spatial orientations and interactions (both 'real world' and in the cloud).

An n=1 orientation allows us to focus on the "psychology of space" created by our interactions with healthcare environs, and think of ways to augment that wave pattern with embedded online access points.

With Twitter, for instance, the message decays (and has a half-life that varies by channel - each social media app or site has its own half-life signature) but the channel of engagement doesn't. Like an aquaduct, the piping/transport system is there long after a certain volume of water has flowed through it to the end destination and been utilized.

Now I'll restate the blatantly obvious, but bear with me for a few more sentences. N=1 brings social media into healthcare's orbit because each patient also has an individual half-life. Like chemical symbols, each one is unique. Social media is, increasingly, the way we leave radioactive marks, our personal signatures, behind.

When I'm past the latter end of the lifecycle, I hope my family and friends read my notebook scribblings. My tweets. My blog entries. Combined with what they know about my physical, interactive self, this presents a more complete picture of who I am and what I value. What information I used to make decisions. What things I found important enough to write for and fight for.

This is my digital genome. N=1 healthcare will, cyborg like, enable it to coexist with my physical proteome. Together, the two equal my meome.

And it is always with the meome in mind, first and foremost, that I make healthcare choices relevant to my personal narrative, and how I want my choose an adventure story to progress.

Our genetic blueprints vary, despite large similarities - there is no one exactly like us (or at least not until cloning goes mainstream) - no intersection with care that works *exactly the same way with 100% certitude. Each person's body of knowledge is an isolated, underutilized scrpt, an individual Rosetta Stone that must be translated for best care efficacy.

Until we allow ourselves to focus on the n=1 in healthcare, we will not succeed in utilizing this largely discounted asset to the fullest.

I don't know about you, but I'm not a huge fan of senseless waste. New Year's Resolution - focus on channels, methodologies, tools, and groups that allow n=1 utilization, and integration into a systemic ecosystem of care planning, delivery, and evaluation.

Now, who's got the eggnog?

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