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Paging Dr. Google: Does Better Data = Better Health?

Updated: Jul 24, 2023

In 2011, information scientist Larry Smarr described his 10-year effort to “increasingly quantify my body.”

Smarr brings serious skills to the task. Based for many years at UC-San Diego, he’s a long-time top-tier performer in deep realms of computer science.

Smarr has had periodic MRIs, regular blood work, and colonoscopies far more often than the national average. He has tallied what he eats and drinks and the calories he has burned. He has had his DNA sequenced. He has produced, and shown to his colleagues, 3-D images of his innards.

It paid off when he figured out that he had Crohn’s disease, a challenging gastrointestinal condition, before his doctors did.

Smarr clearly has a passion for self-development and access to plenty of tools for the job.

But his story, and the stories of thousands of self-trackers, raise challenging questions.

How should doctors assess data that patients generate?

How should my data affect my diagnosis and treatment?

And the historian’s old reliable: Who decides?

We’ll circle back to these. Let’s start at the top.

In 1963, Nobel Prize-winning economist Kenneth Arrow described a distinguishing attribute of the medical marketplace.

The formal term is information asymmetry; management scholar David Dranove called it the shopping problem.

When we need a refrigerator, we may have an idea of what size and features we’re looking for. How many of us have a comparable idea when we shop for medical care? We want to heal, or prevent, a problem, but beyond that, most of us don’t know much about surgical options or the latest beta-blocker.

This doesn’t make us helpless in seeking medical care. The internet, and hundreds of apps and devices, can help people who want to take an active role in staying healthy.

In 2023, self-monitoring is going mainstream. In a 2020 survey of more than 4,500 U.S. adults, 42 percent said they were using some form of technology to keep tabs on their health and fitness. In 2013, this number was 17 percent.

Self-tracking, also known as lifelogging and personal analytics, enables people to monitor their moods, sleep patterns, behavior, biomarkers, finances, fertility, musical tastes, productivity, and more. The Apple Watch, Fitbit, and hundreds of others are moving medical measurement beyond the clinic.

As forward-looking as self-tracking is, its roots go way back. Medicine and measurement are long-time collaborators, and the history of self-experimentation is rich.

A 16th century physician, Santorio Santorio, diligently sought to understand how living systems used energy. He tracked his bodily inputs and outputs, and weight changes that resulted, for 30 years. American statesman and inventor Benjamin Franklin learned of Santorio’s work and began to look more closely at what he ate and expelled. Franklin extended his self-scrutiny to “monitor his moral behavior and keep a record of his sins.”

Today, if you have had your blood pressure checked, or have checked it yourself, you have encountered medicine’s eternal reliance on measurement.

Between Larry Smarr’s level and those of us struggling to set an old-school alarm clock, a band of dedicated self-trackers is taking personal measurement into uncharted territories.

Since 2007, the Quantified Self (QS) community has provided an organizational structure, a platform, guidance, philosophical direction, and encouragement to self-trackers. Sociologist Deborah Lupton wrote in 2016 that the “Quantified Self as a subculture has exerted increasing influence over the definition and practices of self-tracking. The term ‘quantified self’ has entered the cultural lexicon.”

The group describes itself as “an international community of users and makers of self-tracking tools who share an interest in “self-knowledge through numbers.’” For QSers, the tools, and the ability to analyze the data they yield, are changing what it means to be an effective steward of one’s well-being.

As personal as self-tracking is, a defining element of QS has been a commitment to disciplined information sharing. In January 2020, co-founder and writer Gary Wolf wrote that the QS community “organized itself around one key activity: sharing first person reports about our own discoveries using our own data.” This approach has given the group a fruitful mix of “clarity and common identity.” Presenters adhere to a three-part structure: “What did I do? How did I do it? What did I learn?”

The QS site’s Show and Tell section has hundreds of presentations, organized in 21 categories. Each talk includes a brief video, a transcript, and a list of devices and applications used. Categories include sleep; chronic conditions; mood and emotion; media; and productivity.

And what an assortment of projects it is.

Three Marathons on Zero CaloriesSeparating Work and HomeTracking My Personal Reliability #1000DaysofQS: Daily Art From Data Tracking Across GenerationsHow Much Carbon Dioxide do I Emit? … How I Zapped My Brain with a 9V Battery to Overcome Analysis Paralysis.

QS began with an article in Wired magazine in 2007. Author Gary Wolf has said that in the early 2000s he and fellow Wired employee Kevin Kelly were self-tracking and had friends who were doing the same. They set up the QS web site and encouraged people to share their stories in meetup groups and online forums.

So, 16 years on, how extensive has self-tracking become?

Market research firm GlobalData Healthcare projects the wearable technology market to grow from $59 billion in 2020 to $156 billion in 2024. An aging population, along with apps and devices becoming more powerful and connected, are the growth engines they cite. Currently, smartwatches and hearables are the largest wearables segments. The pandemic-spawned “surge in fitness trends at home” appears to the company to be a trend that will endure.

Another research organization, Fortune Business Insights, puts the global market for wearable medical devices at just under $30 billion in 2019. The firm projected the market to reach about $196 billion in 2027. Fortune cited the pandemic’s ability to bring a “sharp focus on the need to prioritize health” as a positive industry trend.

So are millions of people just taking more responsibility for their health? Or is a larger shift under way?

My short answer is that both are happening. The longer answer has three parts.

First is the practical part. Self-tracking reflects an understanding that in times of government austerity and economic fragility, people feel a need to take more initiative when it comes to their health. Those who are managing chronic conditions have ongoing motivation to keep a close eye on themselves.

On the philosophical side, observers have asked what concept of the self all this tracking promotes.

In 2016, sociologist Deborah Lupton asserted that self-monitoring efforts “reproduce the notion of individuals as atomized actors … the inauthentic self can be worked on by the self for the self.” She noted that self-tracking “represents the apotheosis of the neoliberal entrepreneurial ideal.”

In 2019, cultural commentator Douglas Rushkoff wrote that “a mindset encouraged by wristbands that count our heartbeats and footsteps under the pretense of improved health or life extension [suggests that] health, happiness, and humanity itself are all reducible to data points and are subject to optimization. We are all just numbers, the quantified self.”

These authors are depicting different threats of isolation. Lupton believes self-trackers can get detached from social ties; for Rushkoff, dimensions that are harder to quantify – e.g., emotional and spiritual growth – are what data-driven people risk leaving behind. Empathy, thoughtfulness, communications skills, purpose, and our ties to groups and causes – what would a spreadsheet on them look like?

On the professional side, technically sophisticated self-tracking raises old issues in new forms. Remember the information imbalance that economist Kenneth Arrow described? That asymmetry is basic to doctors’ clinical authority. By chipping away at that imbalance, self-trackers are reshaping the doctor-patient dynamic. But are we entering a world in which, as physician and author Eric Topol puts it, “the patient will see you now?”

Beyond these considerations, other factors might temper overly buoyant forecasts for the transformative future of self-tracking in medicine.

I live in Silicon Valley, where data worship is a deep secular faith. When my work involved deep dives into an avalanche of quarterly financial and market data, I learned that even granular, reliable data can raise as many questions as they answer. Historian Jill Lepore’s recent piece in The New Yorker is a graceful dismantling of statistics as the ultimate for people seeking to understand themselves and their world.

In addition, there are technical and cultural issues related to incorporating data from self-trackers into health care delivery.

A 2022 study showed how patients often are reluctant to mention data they’ve gathered for fear that it might be irrelevant or appear disrespectful. Time-pressed physicians frequently don’t know how to assess what patients bring them. Even if a patient has Larry Smarr-level data, there can be difficulties integrating that data with electronic health records.

I began by asking what role patient-generated data might play in a doctor’s diagnosis and treatment decisions. As happens often in medicine, it depends. There are many variables – the specifics of the condition, the history of the patient, the circumstances of that patient, and the inclination of someone to gather data. Over time, doctors and patients will figure out more specific ways to tailor patient data to individual cases.

But there’s another aspect of self-tracking that worries me.

The more we emphasize health care solutions based strictly on individuals, the less likely we are to strengthen our public health system. Self-tracking has a lot of potential. We could, I believe, give that potential an enduring boost by revamping our preventative, educational, and economic efforts to make health care far more accessible and affordable.

The COVID-19 pandemic revealed and exacerbated long-simmering weak spots in American health care. At the risk of stating the obvious, very few of us will ever be able to track ourselves the way Larry Smarr can. A robust public health system, as a centerpiece of a truly national health care program, could produce numbers that would help a lot of people feel a whole lot better.

Illustration c Bryce C. Hendry 2023.


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