Tag Archives: Privacy
As much as we talk about self-tracking being about health or fitness. . . I think it’s about identity. I think it’s about us. It’s about seeing something meaningful in who we are.
Laurie Frick is a self-tracker and visual artist. It this unique combination that has led her down a path of learning about herself while using the data she collects to inform her artistic work. What started with time and sleep tracking rapidly expanded to included other types of data. In this short talk, presented at the 2014 Quantified Self Europe Conference, Laurie explains how her past experiences have informed her new way of thinking about data, “Don’t hide. Get more.”
If you’re interested in Laurie’s artistic work I highly recommend spending some time browsing the gallery on her website.
Enjoy this week’s reading list. If you’d like to submit something for future What We’re Reading posts we invite you to get in touch!
Data Journalism Needs to Up Its Own Standards by Alberto Cairo. The influx of new data-based journalistic endeavors seems to grow by the day. In this great piece Alberto Cairo presents four suggestions for those practicing that art and science of data-based reporting.
Big Data Should Not be a Faith-Based Initiative by Cory Doctorow. The idea of “big data” as a miraculous fountain of new knowledge is widespread. In this article Cory Doctorow brings to light some of the major concerns about personal data and the true possibility of de-identification.
Data Privacy, Machine Learning, and the Destruction of Mysterious Humanity by John Foreman. This is a long read, but definitely worth the time. If you’re like me you’ll spend the next few hours (day?) thinking about yourself, the various companies and organizations consuming your data, and how your life may (or may not) be shaped by the information you willingly hand over.
Privacy Behaviors of Lifeloggers using Wearable Cameras [PDF] by Roberto Hoyle, Robert Templeman, Steven Armes et al. This research paper paper offers a good glimpse into the the concerns and real behaviors of people using photo lifelogging systems. This is an area we’ve previously explored (see Kitty Ireland’s great write-up about our lifelogging town hall at QSEU13) and we expect to continue discussing.
Battery Life, 6mo Checkup By James Davenport. It may seem odd to have a post about tracking battery life from a laptop here in the Show&Tell section, but this is a really neat post. As part of tracking his laptop battery he also tracked his usage and led to some interesting data about his sleep. (Don’t forget to check out the post that kicked off his battery tracking.)
Bringing My Data Together by John T. Moore. John is on a journey of improving his health and being more active through self-tracking/monitoring. In this post he pulls together some of his most important data, but I also suggest reading his summary of how he got started with self-tracking.
Seven Days of Carsharing by Density Design. Not exactly personal data here, but some beautiful visualizations based on one week of data from the Enjoy, a carsharing service in Milan.
Lee Rogers’ Annual Reports by Lee Rogers. Lee has been tracking different aspects of his life for more than three years. Since 2011 he’s put together Annual Reports detailing his personal data. You can view his 2011, 2012, and 2013 reports on his website.
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Today’s post comes to us from Laurie Frick. Laurie led a breakout session at the 2014 Quantified Self Europe Conference that opened up a discussion about what it would mean to be able to access all the data being gathered about yourself and then open that up for full transparency. In the summary below, Laurie describes that discussion and her ideas around the idea of living an open and transparent life. If you’re interested in these ideas and what it might mean to live an open and transparent life we invite you to join the conversation on our forum.
by Laurie Frick
Fear of surveillance is high, but what if societies with the most openness develop faster culturally, creatively and technically?
Open-privacy turns out to an incredibly loaded term, something closer to data transparency seems to create less consternation. We opened the discussion with the idea, “What if in the future we had access to all the data collected about us, and sharing that data openly was the norm?”
Would that level of transparency gain an advantage for that society or that country? What would it take to get to there? For me personally, I want access to ALL the data gathered about me, and would be willing to share lots of it; especially to enable new apps, new insights, new research, and new ideas.
In our breakout, with an international group of about 21 progressive self-trackers in the Quantified Selfc community, I was curious to hear how this conversation would go. In the US, data privacy always gets hung-up on the paranoia for denial of health-care coverage, and with a heavy EU group all covered with socialized-medicine, would the health issue fall away?
Turns out in our discussion, health coverage was barely mentioned, but paranoia over ‘big-brother’ remained. The shift seemed to focus the fear toward not-to-be-trusted corporations instead of government. The conversation was about 18 against and 3 for transparency. An attorney from Denmark suggested that the only way to manage that amount of personal data was to open everything, and simply enforce penalizing misuse. All the schemes for authorizing use of data one-at-a-time are non-starters.
“Wasn’t it time for fear of privacy to flip?” I asked everyone, and recalled the famous Warren Buffet line “…be fearful when others are greedy and greedy when others are fearful”. It’s just about to tip the other way, I suggested. Some very progressive scientists like John Wilbanks at the non-profit Sage Bionetworks are activists for open sharing of health data for research. Respected researchers like Dana Boyd, and the smart folks at the Berkman Center for Internet and Society at Harvard are pushing on this topic, and the Futures Company consultancy writes “it’s time to rebalance the one-sided handshake” and describes the risk of hardening of public attitudes as a result of the imbalance.
Once you start listing the types of personal data that are realistically gathered and known about each of us TODAY, the topic of open transparency gets very tricky.
- Time online
- Online clicks, search
- Physical location, where have you been
- Money spent on anything, anywhere
- Credit history
- Do you exercise
- What you eat
- Sex partners
- Bio markers, biometrics
- Health history
- School grades/IQ
- Driving patterns, citations
- Criminal behavior
For those at the forefront of open privacy and data transparency it’s better to frame it as a social construct rather than a ‘right’. It’s not something that can be legislated, but rather an exchange between people and organizations with agreed upon rules. It’s also not the raw data that’s valuable – but the analysis of patterns of human data.
I’m imagining one country or society will lead the way, and it will be evident that an ecosystem of researchers and apps can innovate given access to pools of cheap data. I don’t expect this research will lessen the value to the big-corporate data gatherers, and companies will continue to invest. A place to start is to have individuals the right to access, download, view, correct and delete data about them. In the meantime I’m sticking with my motto: “Don’t hide, get more”.
If you’re interested in the idea of open privacy, data access, and transparency please join the conversation on our forum or here in the comments.
By popular request, we have just launched a global QS forum at: http://forum.quantifiedself.com/
Gary, Dan Dascalescu, and I took some exciting topics from the conference and turned them into forum discussions, with expert moderators to help explore ideas and answer questions. You’ll find discussions on:
Please join in the conversations, ask questions, share what you’ve learned, and come play with us!
I was curious to see if I was the only one crazy enough to share my health data publicly, so last week I posted two questions as my Facebook status. “Would you track your health on Facebook (weight, calories, sleep, exercise) for all your friends to see?”, followed by “What if it was completely private for only you to see?”
The answers I got surprised me. I didn’t expect 26 people to reply. I didn’t expect such detailed opinions. I didn’t expect the answer to be a resounding, 70% yes.
Another surprise was the range and passion of replies, from “no way!’ to “I would love that!”, and everywhere in between. Here are some of the comments I found most interesting, in no particular order.
“I would keep stuff like basic fitness info on something like facebook. I wouldn’t trust medical info here.”
“Public daily measurement is an interesting way to keep you on your diet/exercise plan/meditation schedule, but most people probably want to share the social/personal significance of the data rather than the data itself. e.g. “Mike lost 2 lbs this week! Now he’s 10% of the way to his goal!” rather than daily weight variation.”
“don’t mind anyone seeing this info …it’s just the job of collecting it”
“On one hand, I don’t think my “friends” care what I weigh, etc., though I don’t mind sharing this info with them. In fact, I’d expect some might find this level of personal disclosure somewhat creepy and odd. Developing flexible privacy and data-sharing controls for both the information sharer and recipient will be important.
On the other hand, I’d like to make this info available to researchers and those developing applications for new forms of health monitoring systems. Facebook seems to have emerged as the current leading platform for social networking. It provides a strong platform for application developers to build tools for new types of interaction and collaboration. So, I hope that my participation on the cutting edge of health information monitoring will lead to beneficial new forms of medical practice.
I think social networking enables a new form of participatory science, which is more than passive observation. It allows for real-time feedback, social reinforcement for participants from trusted sources, and dynamically configurable experiments, which can lead to real-world outcomes.”
“I don’t think I would be comfortable doing this. I don’t trust that anything you put on facebook is completely private. I do like the idea though.”
“For what reason exactly? In the interest of being proactive about my health? Would there be a benefit to allowing people to see this info?”
“the caloric intake measure is hard for me…I’m more of a guestimator with food. I’m not sure I’d like everyone to see my weight on here either. Perhaps good motivation, but still. I’d rather have a smaller community know about that (I’m not really a Biggest Loser reality show kind of person).”
“yes — would love to be able to add categories of things to track
and add and remove permissions easily — would rather share a report
than the data”
“to me it’s a simple layer of accountability, like going to the gym with a buddy versus going by yourself. Visibility=incentive. Imagine how many pushups I would do if I did…like at Cross Country practice – team pushing me, not just me+1, 2
here is where economies of scale, intertwining of cyborg lifestyle and quantity+content of connections have perfect opp to mashup”
“Only if I could lie.”
What did I learn from this exercise? The biggest issues raised were privacy and meaning. People wanted to decide WHO got to see which parts of their data. They also wanted to explore WHY they should track themselves and what benefits they would derive. Two people questioned the logistics of how to track. Almost half of the respondents expressed a general mistrust of Facebook in terms of privacy controls.
What else did I learn? Well, maybe I’m not so crazy after all.
Now it’s time to open this up for the QS community to weigh in… Would YOU track your health on Facebook? Post your comments below.