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.
- 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).
- 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.