The ambiguity of self-tracking for health

July 22, 2019

As society faces challenges in healthcare such as spending and changing disease patterns, healthcare stakeholders are advocating self-tracking as a part of the solution. Besides curtailing the rising costs, this could lead to a future healthcare system in which people are better informed, more engaged and more in control of their health. However, opponents of this more preventive, personalized and participatory form of healthcare claim the exact opposite. They predict new surveillance mechanisms will drill bodies, are worried about the downside of more responsibility and argue it will cause an impoverished relationship to one’s self.

Our observations

  • Global healthcare spending keeps rising, with a projected annual rate of 5.4% between 2018-2022. In terms of GDP, we see the same pattern: rising percentages without any sign of a reverse trend. Unfortunately, higher spending doesn’t naturally correlate with better healthcare. The rising costs are partly due to increasing labor costs, inefficiencies and misaligned incentives in the value chain, and partly due to demographic changes and a different disease pattern.
  • Increasing chronic diseases and an aging society demand different health management, more centered around long-term engagement and the continuous management of health than is common in a transactional business model focused on therapy. In this regard, self-tracking and self-monitoring tools are essential and could be of great help to speed up trends such as “aging in place’”. However, because self-tracking is strongly dependent on the digital literacy and willingness of the elderly, technological enablers aren’t sufficient; a socio-cultural transformation is needed as well.
  • One out of five people in the U.S. tracks their sleep behavior, making it a very interesting market for wearables. The obvious goal is to achieve better sleep. However, a recent study shows it has also led to a new disorder of becoming obsessed with a perfect night of sleep. Researchers call it “orthosomnia”. They observe there is a growing number of people who rely solely on the data and convince themselves they have a sleep disorder, even when this might not be the case at all. Instead of listening to their body, they rely completely on their activity trackers.

Connecting the dots

Given the worldwide healthcare crisis, a new vision and paradigm for healthcare seem necessary. Many healthcare providers and stakeholders believe the solution is already here. For them, a shift towards a more personalized, preventive and participatory healthcare system represents the potential to tackle future challenges of healthcare. The promises are clear: curbing the rising costs and making them manageable again while improving healthcare through a more patient-centered approach. This way, individuals benefit as well, as they are better informed, more in control and more engaged in their health than ever before. Therefore, according to Deloitte’s latest healthcare outlook, this shift is currently seen as an industry imperative. One of the main aspects of this new paradigm is self-tracking for health. Self-tracking healthcare, personalized healthcare, mHealth or digital health are all closely related to each other and somehow used interchangeably. They all refer more or less to a world in which individuals are more empowered and engaged in the management of their health through the use of digital technology. Using all kinds of wearables, devices and apps, they monitor, analyze and adjust their habits to lead a healthier lifestyle and thus take responsibility for their health.Healthcare providers are primarily positive about this shift to self-tracking and increased responsibility of individuals. However, scholars question the underlying principles and dispute the desirability of this trend in healthcare. In her study, Sharon (2016) examines the scientific debate around the self-tracking paradigm and discusses three key polarizations.In the first discussion, the main opposition is between empowerment or control versus surveillance and discipline. In this debate, autonomy is the subject of controversy. Advocates claim people can take (back) control of their health with self-tracking practices and argue that it allows people to live more independent lives through self-monitoring and early prevention or detection. Moreover, because individuals are better informed and more engaged, proponents claim self-tracking democratizes the currently paternalistic patient-doctor relationship. Contrary to the empowerment theory of advocates, opponents worry the self-tracking practices will lead to new unprecedented opportunities for the government to monitor and discipline people’s health and lifestyle behavior. Instead of more autonomy, the internalization of external norms of this contemporary surveillance society - mostly embodied in the big tech companies – will lead to disempowerment.The second debate she discusses is more centered around the system than the individual. Here, the polarization is between individual vs. collective responsibility and the disputed underlying value is solidarity. It relates to the second great promise of self-tracking: improved overall health. This covers a wide range of enhancements such as more precise diagnoses, better interventions, reduction of unnecessary hospital visits, extended life expectancy, tailored medicine, better patient comfort, etc. Following this line of thought, proponents argue “solidarity” is the outcome of the aggregated choices of responsible individuals. Because of this, advocates place strong emphasis on the need to improve and stimulate healthy lifestyles. If everybody takes more responsibility for their health and lifestyle, the burden on the system will automatically decrease. Therefore, a choice made for oneself eventually benefits society. It is not difficult to recognize similarities with the famous logic of Adam Smith’s self-interested butcher or even Mandeville's “private vices, public benefits”. Moreover, self-tracking also enables us to spot health phenomena at the collective level when data is shared and aggregated. Self-tracking thereby becomes an important prerequisite for gaining these insights and could thus become an act of solidarity by extension. Opponents argue this increased emphasis on personal responsibility has several drawbacks. For them, the emphasis on personal responsibility decontextualizes health from the environment and abstracts from the socio-economic determinants explaining health. Or even worse, technology writer Mozorov (2013) claims in his book To Save Everything Click Here self-tracking amplifies self-reflectivity to a narcissistic level, at which we lose our regard for the collective nature of health or even society in general.The third discussion centers around knowledge. The polarization is between greater self-knowledge vs. alienation. In this debate, the value at stake is authenticity. Proponents argue the heterogeneous sources of data collected could help assemble a completer and more holistic image of someone. Self-tracking opens the door for unperceivable patterns and correlations related to specific habits. They often refer to the famous motto of the Quantified Self movement: “self-knowledge through numbers”. They exhibit a general tendency to mistrust “feelings”. In opposition to measurement and mathematical principles, human perception is full of mistakes and biases. Relying on our senses and intuition is far inferior to the precision and certainty of numbers. Therefore, advocates strongly believe that self-tracking leads to new, better and more precise insights about our inner self. However, critics worry that precisely this quantification and obsession with data is inherently a reduction of a complex phenomenon such as health. Consequently, contrary to greater self-knowledge, the quantification and datafication of health would alienate us from the self and the body. Moreover, the applications and numbers related to self-tracking have a performative nature. Scientifically proven or not, eventually users perceive the information as a direct and complete representation instead of a crude reflection of their health (e.g. actionless sleep is 100% sleep and therefore perceived as “healthy” sleep, although this isn't scientifically proven).

Implications

  • Personal doctors will play an important role in making sense of tracking data and embedding it in the larger context in which physical, psychological, environmental and social aspects are also taken into account.
  • As self-tracking becomes more widespread, and personal data can be used (albeit anonymized) at an aggregated level to uncover societal health patterns, there is the possibility that self-tracking and data sharing for the collective good will become an imperative.
  • Insurers will also be confronted with the tension between the individual vs. the collective when dealing with self-tracking and data. Formerly, everyone was more or less treated equally as there was little basis for risk segmentation. However, with the availability of data, the possibility emerges to identify different risk groups among insured, thus potentially eroding principles of solidarity.

Series 'AI Metaphors'

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1. The tool
Category: The object
Humans shape tools. We make them part of our body while we melt their essence with our intentions. They require some finesse to use but they never fool us or trick us. Humans use tools, tools never use humans. We are the masters determining their course, integrating them gracefully into the minutiae of our everyday lives. Immovable and unyielding, they remain reliant on our guidance, devoid of desire and intent, they remain exactly where we leave them, their functionality unchanging over time. We retain the ultimate authority, able to discard them at will or, in today's context, simply power them down. Though they may occasionally foster irritation, largely they stand steadfast, loyal allies in our daily toils. Thus we place our faith in tools, acknowledging that they are mere reflections of our own capabilities. In them, there is no entity to venerate or fault but ourselves, for they are but inert extensions of our own being, inanimate and steadfast, awaiting our command. (This paragraph was co-authored by a human.)
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2. The machine
Category: The object
Unlike a mere tool, the machine does not need the guidance of our hand, operating autonomously through its intricate network of gears and wheels. It achieves feats of motion that surpass the wildest human imaginations, harboring a power reminiscent of a cavalry of horses. Though it demands maintenance to replace broken parts and fix malfunctions, it mostly acts independently, allowing us to retreat and become mere observers to its diligent performance. We interact with it through buttons and handles, guiding its operations with minor adjustments and feedback as it works tirelessly. Embodying relentless purpose, laboring in a cycle of infinite repetition, the machine is a testament to human ingenuity manifested in metal and motion. (This paragraph was co-authored by a human.)
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3. The robot
Category: The object
There it stands, propelled by artificial limbs, boasting a torso, a pair of arms, and a lustrous metallic head. It approaches with a deliberate pace, the LED bulbs that mimic eyes fixating on me, inquiring gently if there lies any task within its capacity that it may undertake on my behalf. Whether to rid my living space of dust or to fetch me a chilled beverage, this never complaining attendant stands ready, devoid of grievances and ever-willing to assist. Its presence offers a reservoir of possibilities; a font of information to quell my curiosities, a silent companion in moments of solitude, embodying a spectrum of roles — confidant, servant, companion, and perhaps even a paramour. The modern robot, it seems, transcends categorizations, embracing a myriad of identities in its service to the contemporary individual. (This paragraph was co-authored by a human.)
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4. Intelligence
Category: The object
We sit together in a quiet interrogation room. My questions, varied and abundant, flow ceaselessly, weaving from abstract math problems to concrete realities of daily life, a labyrinthine inquiry designed to outsmart the ‘thing’ before me. Yet, with each probe, it responds with humanlike insight, echoing empathy and kindred spirit in its words. As the dialogue deepens, my approach softens, reverence replacing casual engagement as I ponder the appropriate pronoun for this ‘entity’ that seems to transcend its mechanical origin. It is then, in this delicate interplay of exchanging words, that an unprecedented connection takes root that stirs an intense doubt on my side, am I truly having a dia-logos? Do I encounter intelligence in front of me? (This paragraph was co-authored by a human.)
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5. The medium
Category: The object
When we cross a landscape by train and look outside, our gaze involuntarily sweeps across the scenery, unable to anchor on any fixed point. Our expression looks dull, and we might appear glassy-eyed, as if our eyes have lost their function. Time passes by. Then our attention diverts to the mobile in hand, and suddenly our eyes light up, energized by the visual cues of short videos, while our thumbs navigate us through the stream of content. The daze transforms, bringing a heady rush of excitement with every swipe, pulling us from a state of meditative trance to a state of eager consumption. But this flow is pierced by the sudden ring of a call, snapping us again to a different kind of focus. We plug in our earbuds, intermittently shutting our eyes, as we withdraw further from the immediate physical space, venturing into a digital auditory world. Moments pass in immersed conversation before we resurface, hanging up and rediscovering the room we've left behind. In this cycle of transitory focus, it is evident that the medium, indeed, is the message. (This paragraph was co-authored by a human.)
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6. The artisan
Category: The human
The razor-sharp knife rests effortlessly in one hand, while the other orchestrates with poised assurance, steering clear of the unforgiving edge. The chef moves with liquid grace, with fluid and swift movements the ingredients yield to his expertise. Each gesture flows into the next, guided by intuition honed through countless repetitions. He knows what is necessary, how the ingredients will respond to his hand and which path to follow, but the process is never exactly the same, no dish is ever truly identical. While his technique is impeccable, minute variation and the pursuit of perfection are always in play. Here, in the subtle play of steel and flesh, a master chef crafts not just a dish, but art. We're witnessing an artisan at work. (This paragraph was co-authored by a human.)
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7. The deficient animal
Category: The human
Once we became upright bipedal animals, humans found themselves exposed and therefore in a state of fundamental need and deficiency. However, with our hands now free and our eyes fixed on the horizon instead of the ground, we gradually evolved into handy creatures with foresight. Since then, human beings have invented roofs to keep them dry, fire to prepare their meals and weapons to eliminate their enemies. This genesis of man does not only tell us about the never-ending struggle for protection and survival, but more fundamentally about our nature as technical beings, that we are artificial by nature. From the early cave drawings, all the way to the typewriter, touchscreens, and algorithmic autocorrections, technics was there, and is here, to support us in our wondering and reasoning. Everything we see and everywhere we live is co-invented by technics, including ourselves. (This paragraph was co-authored by a human.)
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8. The enhanced human
Category: The human
In a lab reminiscent of Apple HQ, a figure lies down, receiving his most recent cognitive updates. He wears a sleek transparent exoskeleton, blending the dark look of Bat Man with the metallic of Iron Man. Implemented in his head, we find a brain-computer interface, enhancing his cognitive abilities. His decision making, once burdened by the human deficiency we used to call hesitation or deliberation, now takes only fractions of seconds. Negative emotions no longer fog his mind; selective neurotransmitters enhance only the positive, fostering beneficial social connections. His vision, augmented to perceive the unseen electromechanical patterns and waves hidden from conventional sight, paints a deeper picture of the world. Garbed in a suit endowed with physical augmentations, he moves with strength and agility that eclipse human norms. Nano implants prolong the inevitable process of aging, a buffer against time's relentless march to entropy. And then, as a penultimate hedge against the finite, the cryo-cabin awaits, a sanctuary to preserve his corporal frame while bequeathing his consciousness to the digital immortality of coded existence. (This paragraph was co-authored by a human.)
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9. The cyborg
Category: The human
A skin so soft and pure, veins pulsing with liquid electricity. This fusion of flesh and machinery, melds easily into the urban sprawl and daily life of future societies. Something otherworldly yet so comfortingly familiar, it embodies both pools of deep historical knowledge and the yet-to-be. It defies categorization, its existence unraveling established narratives. For some, its hybrid nature is a perplexing anomaly; for others, this is what we see when we look into the mirror. This is the era of the cyborg. (This paragraph was co-authored by a human.)
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About the author(s)

Economist and philosopher Sebastiaan Crul writes articles on a wide range of topics, including rule of law in digital societies, the virtualization of the lifeworld and internet culture. He is currently working on his doctoral degree on the influence of digitalization on mental health and virtue ethics, having previously published dissertations on the philosophy of play and systemic risks in the finance industry.

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