Hi! I’m a social sciences student at Cambridge and am writing an essay on the quantified self, and what we can learn from ourselves and society by tracking our own data.
I was wondering if anyone could give some details on why they track their own data?
Do you do so with an end goal in sight or is it with a vaguer aim of basic self improvement? What do you think this ‘turn’ to data in the digital age means about society? Who and what is gaining from it? Do you ever worry about the data you harvest from yourself falling into the ‘wrong hands’?
Any comments anyone has I would be really interested to hear! 
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Hi! One of the reasons that I and many of my peers 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.
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.
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 is so much data opportunity in things like tracking your mood, collective sentiment tracking of communities, and much more.
So, to answer more directly:
There is often a clear end goal to monitor and improve health, whether mental or physical.
Businesses and companies have been hoarding data like dragons hoard gold since the dawn of commerce. Digital does nothing to fundamentally change that other than 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 I personally worry about data falling into the wrong hands? No, the wrong hands already have it. We need to work toward the right hands having it, too.
Thanks for asking these questions!
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Hi! Thank you so so much for this reply, it was really interesting. It’s given me a lot of food for thought and I’ll definitely be keeping an eye on LLIF (let me know if you ever need an intern!).
Your answer, especially about the founder’s mother, was really eye opening for me. I hadn’t considered self-surveillance as a means of agency against structural inequality. 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.
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. 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? Although of course I understand that self-tracking is something you hope to democratise as an end goal.
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?
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.
Sorry for the inundation of questions! And once again thanks so much this, it was really interesting - I will likely be quoting you in my essay!
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Here are QS projects. Most are presentations recorded on video and transcribed.
https://wiki.openhumans.org/wiki/Category:Projects
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Being a German, I have already visited the Lorelei rock several times. So naturally, I had to answer. But your questions also provide a welcome opportunity to lay out my thinking process behind my tracking also for myself.
Here goes:
It is a longer story that starts with cancer, but eventually I committed to not dying from a cardiovascular event. This is because it is among the causes of death that I have the most control over. It is the leading cause of death in Germany (40 % of deaths), and very often preventable.
The best indicators of cardiovascular fitness involve the heart rate during various activities. Resting heart rate, maximum heart rate decline with age, heart rate variability and heart rate during exercise come to mind. I am also interested in the indicators VO2max and maximum strength, which are among the best predictors of all cause mortality.
With this in mind I track the following parameter among others: heart rate continuously, my ability to lift weights, my time needed to run 1000 metres and the heart rate needed to do this, the distance I can run in 12 minutes (Cooper-Test), and my maximum heart rate after sprinting up several flights of stairs, and my body weight.
I am 58 years currently. I expect these characteristics become less good with age. I intend to keep them in the top 10 % or so of my age group by way of training. Committing to the mentioned goal has also led to take unhealthy behaviour even more seriously than before. I have stopped what little alcohol consumption was left in my life, I am restricting free sugar and free carbohydrates (like white flour) intake and avoid blood sugar spikes. Once I wore a Continuous Glucose Monitor for 14 days, and the next one is already in the house for another 14 days.
With regards to your question about society I can offer the following thoughts.
I see the invention of wearables that track heart rate accurately (to stay just with my use case) as one of many instances of welcome technological progress of humanity. People want to be healthy, and these little gadgets make this goal more negotiable and more present. People talk more about fitness, learn more about fitness, studies are being done and this empowers folks to make better choices. So I see a win-win situation: people producing wearables make a living and offer a wanted service in competition with others who also want to make a living doing this, and I get a service for a negligible amount of money. I use a 42 Euro Huawei Band 8, which is almost as good as a chest band for measuring heart beats. I find this almost unbelievable how cheap and easy it is to get the data I need to track my cardiovascular fitness.
I decided to allow Huawei to use my data. I suppose they optimize their already very good algorithms for calculating certain estimates which is fine with me. I want them to make even better wearables.
What does this line of action reveal about me personally? I am curious, intelligent, scientifically minded and have a highly conscientious personality. It is easy for me to follow rules that I made for myself. I love data and converting it into informative graphs from my childhood on. I like the effects of exercise and trying out new things. My current life is organized like I want it to, so that I can think about the future. I care about my loved ones not only in the present, but also in the future, when they may have to worry about my health.
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Great stuff, thanks for sharing
Self-tracking is often used as an effective method of self-directed psychotherapy.
Intellectualization is a method of psychological defense, very common and used unconsciously by many.
The conscious use of intellectualization is effective in protecting against stress in many cases: various diseases, psychological trauma, financial problems,…
Self-monitoring can also be called a part of “stress management.”
Self-tracking can also just be a way to have fun and spend leisure time.
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wow thanks so much that’s really helpful!
Hi, haha yes I’m named after it! Am hoping to go to the Rhine soon and see it for myself.
Thanks so much for your reply, it’s interesting to hear personal anecdotes on how QS has improved people’s lives.
Why do you think being part of the QS community helps with your self-tracking task? Has it inspired you to track other aspects of your life?
My being on this forum - I am a rather recent member - resulted from attraction to the idea that one important part of tracking is thinking about what I want from it. I hoped to find like-minded people here. I also plan to write up the learnings from my hitherto private strength / body weight tracking, and the hope that interested people will see it and comment on it motivates me to do it. Hanging around here and learning about places where people share their journeys led me to discover someone how hiked in the Mount Everest region, which my son is going to do in the next week, and the man shared some helpful tips to not get altitude sickness. Then I discovered the Show&Tell Section, which inspires me to think about what sort of data one can track. In this very thread @rain8dome9 shared the openhumans wiki and I discovered Michael Lustgarten, who wants to live longer than any male before and has a rigorously scientific approach. I am sure I will learn a lot from him and will track more than I thought I would to optimize longevity. But this is all very new, so I don´t have specific plans yet. Tracking blood work seems to be a good idea for me.
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@Heikophilo Heiko Cochius
What do you think about the prospects for Personal Science?
A Framework for Personal Science
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Thank you so much for sharing the paper and asking me. From only reading the OP I can say it lifted my heart, it seems like the authors and I are like-minded. I have training in philosophy of science that has not been used for a long time and look forward to reading the whole article. I plan to share my thoughts when I come around to doing it.
Thank you for your reply! We may be able to support an intern, but we are fairly small and may not meet your educational needs. It’s worth exploring, though, so please email me (rbradshaw@llif.org) if you’d like to talk about it.
I took some time to consider your follow-up questions and need to emphasize my bias in my responses. I am a US-based 30-something with all the experiences and cultural influences you would expect, probably more due to my personal interest in social improvement.
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.
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.
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.
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.
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.
@Algorithm
Here I am back after having read the article. I liked the clarification it brings to several concepts that are related and overlapping. I also liked the conceptual structuring of the process in five steps, which seemed plausible to me.
You asked about the prospects for Personal Science? Did you have a specific prospect in mind?
I would share a cautionary comment. The authors write:
“The reasoning process in personal science is carried out mainly by the individual who is its main subject”
I think the advantage of Personal Science is that it is able to tackle highly individual questions in a highly complex situation like a person within its contex is. But the disadvantage is that due to the extreme specialization of a Personal Scientist peer review is more difficult. Peer review is crucial to cross-examine your own approach and methods and conclusions from devil´s advocates. Personal Scientists therefore need to be particularly educated and critical about the methods and conclusions they draw to not fall prey to confirmation bias, a layman´s thinking errors and misinterpretations. This limits the scope of Personal Science quite dramatically.
Which doesn´t need to deter us in following our own questions. Maybe it is not Science, but something less lofty.
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Perhaps the term Personal Intelligence would be more accurate.
There are all digital scouts on the forum
Today I found an interesting site
Your Personal Intelligence Service
It’s Time for True Freedom of Access to Information
Yes, you nailed it. Personal Intelligence seems an apt choice of word.
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This is right?
Is this your channel?
Yep, got me. But don´t expect I agree with everything I said close to 10 years ago.
