Here’s Why We Need Health Data Collection
By: Asmi Kumar
Tags: Data, Health, Technology, People, Education

Opinion

Here’s Why We Need Health Data Collection

Tech can enable valuable experiences with your health data

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Our data is constantly collected, from YouTube history to calendar reminders to daily workouts, all possible due to rapid technological growth. According to the National Center for Biotechnology Information, 58% of U.S. cellphone users have downloaded a health-related app onto their devices, but an even greater percentage already had pre-installed software that saved health data (Krebs & Duncan, 2015).

Your data, combined with millions and even billions of other people’s, creates big data, or incredibly large datasets. Over time, methods of data collection have evolved, paralleling the developments in science and technology that have allowed companies to harness massive datasets shaping the modern products at our fingertips. As technology becomes an even stronger influence in our daily lives, it is imperative to understand the effects of this kind of data collection from the technological lens and consider multiple perspectives within it.

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A prime stakeholder in the debate of health data collection is undoubtedly major technology companies, namely Apple, Amazon, Facebook, Google, and Microsoft. These companies see healthcare as a brilliant but somewhat untapped opportunity to expand innovation and spur economic growth.

Jia Low, an author at TechHQ, an independent current technology and business news site, examines why these companies are eager for health data. She discusses that in 2019, Google partnered with Ascension, one of the largest healthcare providers in America, and acquired FitBit. Both of these sources accumulated heaps of patient records from around the world. With this data, Google claims it wants to aid doctors and hospitals in managing their patients more effectively and quickly via electronic health records (EHRs), which make up an astounding 80% of health records today. Amazon is a strong competitor in cloud storage, and its 2018 purchase of the online prescription service PillPack signals its push to target healthcare.

The wealthiest tech giant is Apple, which puts privacy at its forefront. Apple is investing in users’ health data to make its Health platform a seamless, more reliable “middleman” in personal health management. Portable devices like the Watch and iPhone (both of which teem with health apps and features) have had positive impacts. Low cites that in 2019, the Watch detected a biker’s severe fall and contacted 911, thus saving his life.

Mark Zastrow, a well-regarded writer from the prestigious peer-reviewed Nature scientific journal, covers Apple and Google’s recent collaboration on their joint COVID-19 contact tracing app that will provide more accurate feedback on infected people and notifications for those who came into contact with someone who tested positively. He points out that together, they have solved many of the privacy and efficiency issues of prior methods by implementing encrypted keys and eliminating access to personally-identifying data.

Both Low and Zastrow agree that with appropriate privacy measures — encryption, pseudonyms, on-board processing, strong algorithms, and the like — technology companies have just intentions and share a goal of inventing for the betterment of society.

It is clear that technology companies provide new innovations targeted to help manage the health of their users, but it is crucial to investigate how users incorporate them into their lives. According to a study by Rock Health from 2015 to 2018 on 4,000 U.S. adult respondents, users have adopted these tools at a record rate: in 2018, 89% of those surveyed used one or more health tools on their devices, an increase from 80% in 2015 and proof that user traction has improved. Authors Sean Day and Megan Zweig from the nationally-recognized technology and health funding company Rock Health construct their argument by discussing the common means through which data is collected: live video telemedicine, wearables, mobile tracking, online reviews, and online health information. In 2018, wearable use began shifting more towards managing health conditions and diagnoses rather than tracking fitness. Additionally, the authors note positive impact of health data collection by reporting that users rated the tools an average of 4.1 out of 5 stars, a high performance.

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A second way to explore users’ opinions on technology companies handling their health data is trust levels. Lance Lambert, a graduate from Duke University and the University of Cincinnati working at Fortune as a data analyst, reports on a study conducted by Fortune that surveyed 1,267 randomly selected U.S. adults. Lambert first describes that many respondents liked health tracking apps and devices, because it was “illuminating” to “see [their lives] told by the minute.” He clarifies that unfortunately, many users are unaware that their data is stored; even though they technically provide consent before using health data collection apps, they often disregard the “fine print.” It was found that 40% of the respondents are fully willing to have their data utilized by Amazon and Apple, with smaller percentages for Google and Facebook.

Interestingly, this demonstrates that many people are in a paradox: they utilize digital health data tools widely and regularly but are also wary of technology companies using that data to their, and potentially the public’s, benefit.

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A third role involved heavily is healthcare professionals, specifically doctors. James Gaston, the senior director of data modeling at Healthcare Information and Management Systems Society, says, “[Our cultural definition of healthcare] is moving away from a brick-and-mortar centric event to a broader, patient-centric continuum encompassing lifestyle, geography, social determinants of health and fitness data in addition to traditional healthcare episodic data.” The sheer volume of health data being collected implies that it accurately represents its target audience, significantly improving a more time-consuming, costly, and ineffective policy of direct doctor-patient communication. He asserts that if limited data is collected by only doctors and analyzed at too granular of a level, patterns will be difficult to spot and consequently, innovation will decrease.

Medical data from users’ devices combined with doctor-specific sessions incorporates a large array of different types of data — from search queries, app statistics, and wearable outputs to environmental factors and individual lifestyles — and thus provides more informative results. This process of leveraging big data and technology to assist individualized healthcare without a doctor physically present is called telemedicine. Constant collection streaming through patients’ devices, as proved with Apple and Samsung users, can allow doctors, families, and users themselves to consistently track overall health and improve care, says Valarie Romero a telemedicine professor at The University of Arizona.

Other scholars oppose her. Gina Neff, a senior research fellow and Associate Professor in the Department of Sociology at the University of Oxford, quotes an anonymous physician in her survey: “I don’t need more data; I need more resources.” She explains that big data is valued in various ways by different people, so some professionals believe data-intensive solutions take excessive time away from providing quality care. Neff claims that creating healthcare solutions built off of vast data collection does not assess multiple viewpoints well.

It is evident that technology companies, users, and healthcare professionals have different stances on the topic of digital health data collection through devices. While technology companies have a favorable outlook as they work to develop new products that can be beneficial, citizens have varying levels of trust that their data is used for straightforward purposes. In the healthcare industry, some propose data collection increases efficiency, accuracy, and scalability, and others say it undermines the abilities of the professionals themselves. Cumulatively, these perspectives suggest that health data collection from devices — when active consent, privacy, and personal choice are ensured — is generally positive for both the public and technology companies.