Recently, our team came across some questions from a social sciences student. It’s well worth diving into these questions and providing more insight into why people track data. So, why track your data? Read on to learn more about the benefits of tracking your data yourself.
Why track your data? What makes someone start to track their data?
One of the reasons that many of my peers and I track our data is to mitigate and combat the gaslighting by medical professionals to our demographics. Women (and minorities), in general, are often undiagnosed and turned away unhelped by medical professionals due to gender (and other) bias.
72% of women say they’ve experienced medical gaslighting. 17% of women say they have been dismissed or felt they had to prove their symptoms to physicians.
Source
One way to combat that ongoing issue is to advocate for yourself. Advocating for yourself is much more effective when data logs back you up.
Professionally, the nonprofit I work at was founded by someone who watched his mother go undiagnosed with colo-rectal cancer until it was so apparent (a tumor bulging from her abdomen) that it was undeniable. Her health data (collected by a simple symptom log and vitals tracked via Fitbit) showed well-researched and documented signs of dire health that physicians ignored.
She died. She did not have to die then. So, our nonprofit was kicked off afterward to help people start collecting their data and empower everyone to make more informed decisions for their health.
What makes you start to track your data?
Tracking your data is not something that comes naturally and not something that otherwise healthy, ‘unmotivated’ people do. You have to be motivated to do this right now until tools are in place that make it seamless with everyday life. Motivation could be that you or a loved one have a chronic condition to manage or you’re struggling with a habit you want to form/break.
Data is being collected and used by the companies that collect it, so you aren’t protecting yourself from much by also collecting it for personal reasons. Most people aren’t developing their own heart rate monitors at home and then using that data. They are purchasing existing tools. Those companies that made those tools collect that data. They seldom make it easy and simple for you to retrieve your data. Yet they benefit greatly from it.
The QS community and like-minded people elsewhere want to gain the same benefit from something that they are the source of. After all, that data would not exist without the consumer generating it. So shouldn’t the consumer benefit too?
There are a lot of ways that data can be used for the greater good, but there is little incentive for that data to be analyzed and leveraged to do it. There are agricultural, legislative, healthcare, and city planning applications that are easily improved by using data properly. However, who is in charge of using that data? Do they even care that neighborhoods with more walkability and the presence of trees have been proven to increase the health outcomes of those who live there?
There are so many data opportunities in things like tracking your mood, collective sentiment tracking of communities, and much more.
Do you track your data with an end goal in mind?
There is often a clear end goal to monitor and improve health, whether mental or physical. Because tracking your data is a conscious effort, you have to be motivated to do it. Many people are motivated to start tracking their data due to an existing health condition they or a loved one endures.
There are so many people with chronic conditions that motivate them to learn triggers and treatments that work. They need data to find those answers.
What do you think this turn to data in the digital age means for society? Who and what is gaining from the effort to track data?
Businesses and companies have been hoarding data like dragons hoard gold since the dawn of commerce. Digital does nothing to fundamentally change that. Digital data does make it easier for companies to steal data owned by people and benefit from it without sharing that benefit. Society will either allow it or learn that the data holds immeasurable value and work towards recovering their individual rights to their creations.
Companies gain all the benefits from generated data right now. People need to. It’s one of the reasons things like the QS community and other nonprofits like LLIF.org exist.
Do you worry about the data falling into the wrong hands?
No, the wrong hands already have it. We need to work toward the right hands having it, too.
Our colleague asked a few follow-up questions, so we also wanted to add those to this article for readers.
Does being backed by data really help in healthcare?
Seeing as the bias facing women and minorities in the medical field are so entrenched, does being backed by data empirically change the way they are treated? Living in a techno-deterministic society I understand that data has become synonymous with fact and accuracy, but it seems likely that if it is self-collected by the very people being disbelieved in the first place, the authoritative role ‘data’ normally has could be undermined. I’d be keen to know if you had any anecdotes or statistics to prove otherwise.
Yes, it does! Last year, I did a write-up based on Dr. Bryan Hodge’s article about how symptom diaries improve patient care. Both are worth the long read, maybe over a cup of coffee. Long story short, even if your healthcare provider does not believe you, you can believe in yourself and advocate for yourself to a different, more reliable provider. There are also plenty of anecdotes like Ashley Teague who tracked her symptoms and had to push for physicians to provide the healthcare she needed.
Is self-tracking for data a new movement?
Would you consider this movement to tracking your own data a neoliberal turn of sorts? I don’t say that in a derogatory way, because it’s clear that people’s belief they are solely responsible for themselves and their own health is partly a byproduct of the reality of neoliberal austerity measures that leave us all more isolated from receiving good healthcare.
I don’t think tracking your data to improve your health/well-being is part of an ideological movement. It’s just more accessible now. I think it’s a new opportunity for people due to emerging technology and analysis techniques, and we’re all at least a little curious at heart.
Are you only responsible for yourself with data tracking?
But does thinking about ‘motivation’ to track personal data suffer from a similar problem of seeing people as individual’s responsible only for themselves and disregarding structural issues that could affect their health/ability to track themselves in the first place?
Healthcare is the best it has ever been in human history. Time immemorial has shown that we are indeed responsible for ourselves. No other person is as obligated to care for ourselves as we are. Philosophy aside, we can only control how we react to our personal factors. Just like in other examples of someone seeking help, they have to want to be helped, to be helped. What can be done if they cannot or do not want help? Solving that problem is a bit above any one person’s capabilities.
However, can one individual feasibly track that (pulling on a previous example) more trees and walkability in their neighborhood increases the community’s socio-economic well-being over time? Not so much. That’s something we need teams of researchers to prove. In that facet, trying to self-track is impeded by the individualist limitations of (at least US-based) society.
Does self-reporting pose some problems? Yes. But no physician worth their salt will entirely toss out months to years of science-backed health tracker data like what Apple Health and Fitbit provide. Even diving into more nebulous data, mood tracking has been proven helpful for the individual and their mental health providers. (A quick Google Scholar search will lead you to meta-analyses and other studies on mood-tracking benefits). Medication adherence is a big issue in physical and mental health, but how can a provider trust their patient is adhering to the schedule? Well, you’re more likely to trust their adherence practices if it’s been reliably notated for the duration of treatment.
What tangible change could data collectivization bring?
I was also really interested by what you were saying about data’s legislative potential, especially in terms of collective sentiment tracking of communities. Tangibly, what do you think that would look like in terms of enacting change? The inherent atomisation of self-surveillance makes collective change hard, especially if we can’t rely on progressive collective action by Big Tech or the state. I completely agree with you about not wanting this data in the hands of tech corporations – they will just continue to exploit data and sell it privately amongst third parties. But it would also seem like having that personal data nationalised and visible to the state would tighten the government’s grasp on biopower to a concerning level? How do you think self-surveilled data could be collectivised for good?
Tangibly, any change would have to be motivated by economic factors (US-based bias peeking through) since that’s one of the only things that gets the cogs turning at a national scale. On top of having significant economic impact, it also can’t fly in the face of the ultra-powerful who have government pull (think big, influential companies like Merck, Eli Lilly, etc.). The comingling of big pharma executives and legislative powers leads to a line you must toe to get anything helpful done. Since the focus is health data, these entities in healthcare will have plenty of opinions and derailments to inflict on those who want to improve the system.
Perhaps other tangible change could come from appraising the regional symptoms of those near the toxic smoke in Ohio. Legislators could receive reports through appropriate funnels about how particulate matter released in smoke from train derailment fires led directly to say… an increase of cancer prevalence. That would certainly be a dataset to act upon, leading to tangible change in protections for civilians that the next leader in power may, perhaps, not flippantly roll back.
At least in the US, the Federal government can confiscate data or property within reason. There are already data-sharing protocols between Google, Apple, and the Federal government. The data is unanalyzed. Most data is/was unanalyzed (oldie but goodie on that topic). I think emerging AI data analysis will help resolve that untapped ocean of data. At least from my limited viewpoint, the government already has access to self-surveiled data and just does not act upon it due to a lack of motivating factors (read: financial incentive).
How could it be collectivized for good?
The possibilities are limitless. On a small scale, you could analyze community sentiment to improve city planning. On a large scale, you could appraise the impact of social programs and better allocate resources to communities that would experience a greater benefit.
This one’s a little off the wall and slightly sad, but I would like to see people track what foods and treats they give their pets and, over time (decades), see which foods lead to a better quality of life and health. I have tried it myself and found that all my dogs tend to die of cancer towards the end of their anticipated lifespan, whether fed pre-packaged pet foods or homemade balanced meals for their species. There is not enough data to draw a conclusion, though.
When does data tracking hurt more than it helps?
Finally, is there an extent where you believe quantifying yourself becomes unproductive rather than helpful? Could there potentially be a feedback loop where users generate data on themselves and in turn are part of the normalisation of one thing, and the pathologisation of something else? I’m just thinking about the historical interpretation that the invention of the bathroom weighing scale in the 20th century was a driving factor in weight obsession and the feshitisation of certain measurements that aren’t necessarily standardly ‘healthy’ for everyone.
Yes, there is certainly a limit to how much self-surveillance is helpful versus harmful. Your weight/BMI example is a good one. Today’s best example may be how much data people generate/collect via social media. It’s not a healthy practice to begin with, so when hyper-focusing on analyzing social media data, one may be contributing to an existing problem by driving more people to go experience that social media platform.
Want To Start To Track Your Data? Try Best Life.
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