BYOD – Bring your own Data. Self-Tracking for Medical Practice and Research

„Facebook would never change their advertsing relying on a sample size as small as we do medical research on.“
(David Wilbanks)

People want to learn about themselves and get their lives soundly supported by data. Parents record the height of their children. When we feel ill, we measure our temperature. And many people own a bathroom scales. But without context, data is little meaningful. Thus we try to compare owr measurements with those of other people.

Data that we track just for us alone

Self-tracking has been trending for years. Fitness tracker like Fitbit count our steps, training apps like Runtustic deliver to us analysis and benchmark us with others. Since 2008, a movement has been around that has put self-tracking into its center: The Quantified Self.

Self-tracking has been tending for years. In this picture you see a wristband that already made it into a museum and is now on display in the London Science Museum.
Self-tracking has been tending for years. In this picture you see a wristband that already made it into a museum and is now on display in the London Science Museum.

However it is not just self-optimizer and fitness junkies who measure themselves. Essential drive to self-tracking originated from self-caring chronically ill.

Data for the physician, for family members, and for nursing staff

In the US like in many countries lacking strong public health-care, it becomes increasingly common to bring self-measured data to the physician. With many examinations this saves significant consts and speeds up the treatment. With Quantified Self, many people have been able to get good laboratory analytics about their health for the first time ever. One example is kits for blood analysis that sends the measurement via mobile to the lab and then displays the results. Such kits are e.g. widely in use in India.
Also for family members and nursing staff, self-tracked data of the pations is useful. They draw a realistic picture of our conditions to those who care for us. Even automatic emergency calls based on data measured at site are possible today.

The image at the top is taken from the blog of Sara Riggere, who suffers from Parkinson. Sara tracks her medication and the syptoms of her Parkinson’s desease with her smartphone. Her story is worth reading in any case, and it shows all facettes that make the topic „own data“ so fascinating:
http://www.riggare.se/ and
http://quantifiedself.com


Mood-tracking – a mood diary. People suffering from bipolar disorder try to help themselves by recording their mood and other influences of their lives. By doing so, they are able to counteract, when they approach a depression, and they are able to finetune their medication much better, than it would be possible by the rare visits to their psychiatrist. (Shown here is soundfeelings.com)

Data for research

Self-recorded data for the first time maps people’s actions and condition into an uninterupted image. For research, these data are significantly richer than the snap-shots made by classic clinical research – regarding case numbers as well as by making possible for the first time to include the multivariate influences of all kinds of behavior and environment. Even if only a small fraction of self-trackers is willing to share their data with researchers, it is hardly to imagine the huge value the findings will have for medicine, enabled by this.

Privacy

The difficulty with these data: they are so rich and so personal, that it is always possible to get down on the single individual. Anonymization, e.g. by deleting the user id or the IP adress is not possible. Like fingerprints, the trace we leave in the data can always identify us. This problem cannot be solved by even more privacy regulation. Already today, the mandatory committment to informed consent and to data avoidance impede research with medical data to such extent, it is hardly worthwhile to work with it, at all. The only remedy would be comprehensive legal protection. Every person sharing their data with research has to be sure that no disadvantages will come from their cooperation. Insurance companies and employers must not take advantage from the openness of people. This could be shaped similar to anti-discrimination laws. Today, e.g. insurance companies are not allowed to differenciate their rates by the insurant’s gender.

Algorithm ethics

Another issue lies within the data itself. First, arbitrary, technical differences like hardware defects, compression algorithms, or samling rates make the data hard to match. Second, it is hardly the raw data itself, but rather mathematical abstractions derived from the data, that gets further processed. Fitbit or Jawbone UP don’t store the three-dimensional measurements of the gyroscope, but the steps, calculated from it. However, what would be regarded as a step, and what would be another kind of movement, is an arbitrary decision of the author of the algorithm programmed for this task. Here it is important to open the black boxes of the algorithms. As the EU commission demands Google to open its search algorithms, because they suspect (probably with good reasons) that Google would discriminate against obnoxious content in a clandistine way, we have to demand to see behind the tracking-devices from their makers.
Data is generated by the users. The users have to be heared what is made from it.

There is no privacy in mobile

Our phones register in radio cells to route the calls to the phone network. When we move around, we occasionally leave one cell and enter another. So our movements over leave a trace through the cells we have been passing the course of the day. Yves-Alexandre de Montjoye and his co-authors from MIT explored, how many observations we need, to identify a specific user. Based on actual data provided by telephone companies, they calculated, that just four observations are sufficient to identify 95% of all mobile users. We need just so little evidence because people’s moving patterns are surprisingly unique, just like our fingerprints, these are more or less reliable identifiers.

Location

When we analyze the raw data, that we collect through our mobile sensor framework ‚explore‘ we found several other fingerprint-like traces, that all of us continuously drop by using our smartphones. Obviously we can reproduce de Monjoye’s experiment with much more granular resolution when we use the phone’s own location tracking data instead of the rather coarse grid of the cells. GPS and mobile positioning spot us with high precision.

Wifi

Inside buildings we have the Wifis in reception. Each Wifi has a unique identifier, the BSSID and provides lots of other useful information.

Wifis in reception around my office. When the location of the wifi emitter is known we can use signal strength to locate users within buildings.
Wifis in reception around my office. When the location of the wifi emitter is known we can use signal strength to locate users within buildings.

Even the aribitrary label "SSID" can often be telling: You can immediately see what kind of printer I use.
Even the aribrary lable „SSID“ can often be telling: You can immediately see what kind of printer I use.

Magnetic fields

To provide compass functionality, most smartphones carry a magnetic flux sensor. This probe monitors the surrounding magnetic fields in all three dimensions.

Each location has its very own magnetic signature. Also many things we do leave telling magnetic traces - like driving a car or riding on a train. In this diagram you see my magnetic readings. You can immediately detect when I was home or when I was traveling.
Each location has its very own magnetic signature. Also many things we do leave telling magnetic traces – like driving a car or riding on a train. In this diagram you see my magnetic readings. You can immediately detect when I was home or when I was traveling.

Battery

The way we use the phone has effect on the power consumptions. This can be monitored via the battery charge probe:

The battery drain and charge pattern is very unique and also telling the story of our daily lives.
The battery drain and charge pattern is very unique and also telling the story of our daily lives.

Hardware artifacts

All the sensors in our phones have typical and very unique inaccuracies. In the gyroscope data shown at the top of the page, you see spikes that shoot out from the average pattern quite regularily. Such artifacts caused by small hardware defects are specific to a single phone and can easily be used to re-identify a phone.

No technical security

„We no longer live in a world where technology allows us to separate communications we want to protect from communications we want to exploit. Assume that anything we learn about what the NSA does today is a preview of what cybercriminals are going to do in six months to two years.“
Bruce Schneier, „NSA Hacking of Cell Phone Networks“

As Bruce Schneier points out in his post: there are more than enough hints that we should not regard our phones as private. Not only have we learned how corrosive governmental surveillance has been for a long time, there are lots of commercial offerings to breach the privacy of our communication and also tap into the other, even more telling data.

But what to do? We can’t just opt-out. For most people, not using mobile phones is not an option. And frankly: I don’t want to quit my mobile. So how should we deal with it? Well, for people like me – white, privileged, supported by a legal system providing me civil rights protection, that is more discomfort than a real threat. But for everyone else, people that can not be confident in the system to protect them, the situation is truly grim.

First, we have to show people what the data does tell about them. We have to make people understand what is happening; because most people don’t. I am frequently baffled how naive even data experts often are.

Second, as Bruce Schneier argues, we have to get NSA and other governmental agencies to use their knowledge to protect us, to patch security breaches, rather then exploit these for spying.

Third, it is more important then ever, to work and fight for a just society with very general protection of not only civil but also human rights. Adelante!