I <3 data

This post is part of a series on Google's Project Baseline and my perspective as a participant and an amateur bioinformatician.

Some people want to save the world.  They'll love Google's stated goals in Project Baseline, and likely be encouraged to take part: 

  • Uncover new information about health and disease
  • Analyze how genes, lifestyle and other factors influence health and changes in health
  • Measure the differences in health among a sample of the population in order to determine "normal" or expected measures of health, which can be used as reference points in the future
  • Identify biomarkers, or warning signs, that predict future onset of disease
  • Test and develop new tools and technologies to access, organize and analyze health information

Saving the world and learning how to predict the future onset of disease is great, and I wish them all the luck in the world.  But I was convinced by the last goal: I want to take a small step towards universal access to organized and analyzed health information. Because I love data.

Given all of our technology, bandwidth, and capable computers in every pocket, we still live in the dark ages of medical and health data.  And the innovation is not coming from established medical professionals or corporations.  I've had a bunch of x-rays in my life, several EKGs, and I even got my full genome sequenced by a shady genomics think tank linked to the Chinese government.  But when I walk into a doctor's office or a hospital with a migraine or severe chest pain, can the doctor pull up my ECG from last year? Do I have a copy of it on my phone? Do they know I have a pre-existing condition? Do they even know my blood type? Absolutely not.  But hey, don't worry. If you have a life-threatening allergy, a cutting-edge product is here to help: A MedicAlert bracelet.

Notwithstanding the public's healthy fear of putting their sensitive personal and medical data into the cloud, Google is taking a step into this space.  For each of the 10,000 volunteers for Project Baseline, Google plans on making available as much data as possible available on a health portal smartphone application.  Notably, this app is a placeholder now -- all I can see is that I'm a study participant and when my data collection site visits took place.  But the promised data is very intriguing:

Continuous data from the "Study Watch" on your wrist:

  • When your body moves and how active you are (how often you walk or exercise)
  • Your pulse rate and rhythm
  • Daily ECG collection during the suggested "minute of mindfulness"
  • Skin temperature and sweat (through skin conductivity measures) 
  • Conditions around you, like air temperature, air pressure, altitude, humidity, and light, ultraviolet light, and background noise levels

Nightly data from the "Sleep Sensor" under your mattress:

  • Your heart rate and rhythm
  • Your breathing rate
  • Any movement and restlessness as a measure of sleep quality

Yearly (or quarterly, for some participants) data from medical site visits:

  • Ankle Brachial Index: Blood pressure measurements on both arms and both ankles.
  • Cognition Evaluation: Your ability to think and understand things by evaluating language and memory.
  • Comprehensive Medical History: Information about your health such as allergies, health care and hospitalizations, immunizations, personal and family medical history, alcohol and drug use, and other factors that contribute to your overall health.
  • Electrocardiogram (ECG or EKG): A tracing of your heart's electrical rhythm.
  • Eye Evaluation: Your vision and the health of your eyes. This includes a standard vision test, collection of tear fluid, and measuring the pressure in your eye.
  • Hearing Evaluation: A standard hearing test, including frequency sensitivity in each ear.
  • Echocardiogram (a test that uses sound waves to create moving pictures of your heart)
  • Echocardiogram which involves exercising on a treadmill or bicycle and capturing moving pictures of your heart
  • CT scan to look for little spots of calcium in the arteries in your heart
  • Chest x-ray
  • Photos and videos taken of your eye, face, hands, and other parts of the body, including any moles or other skin features
  • Physical Exam: Measurements such as your blood pressure, heart rate, height, weight and other information your doctor usually collects during an annual physical exam.
  • Physical Performance and Movement: Your physical abilities such as your balance, movement and strength.
  • Pulmonary Function Evaluation: How well your lungs work by how much air you breathe in and out, oxygen capture efficiency, VO2 MAX test.
  • Psychological Evaluation: Your mental health, mood and psychological well-being, or factors that could impact them.
  • Sequencing and analysis of your urine (for metabolomics), saliva (for DNA sequencing), tears (for rare-cell capture and sequencing), and swabs of the inside of your cheek, behind your ear, and from your nose (microbiota sequencing), a great deal of blood proteins (proteomics and biomarker levels), and fecal matter (gut flora).

All of this is performed free of charge, and not only has Google promised to make this data available to you in real time, but if any of the collected data suggest an underlying health problem, they will notify you and with your permission communicate it to your medical health professionals.  Professor Sam Gambhir of Stanford University (a principal investigator on the study) has stated that this data is just the beginning. As Google's Life Sciences division (Verily) develops further wearable data collection gadgets, they intend to distribute them to study participants.  Notably, these wearables (including the experimental Study Watch on my wrist) do not need to be approved by the FDA, as they are purely investigational devices. Gambhir states that Baseline is not a study intended to develop consumer-based wearables, but one of the goals is to study the normal variation in biomarkers through the use of devices like the Google Contact Lens.  

To a data nerd like me, this is glimpse into a future where you and your friends aren't just sharing and comparing your Fitbit steps online, but carrying in your pocket or your online profile a full set of health and fitness attributes akin to a real-life role-playing game.  It's a brave new world, but I think it's a step in the right direction.

There is an important caveat here.  Cui bono? Who benefits from this study? Verily and Google are money-making private corporations, and they clearly intend to make money in the long run even from moonshots like Project Baseline. Take a look at my previous note on data privacy for a few of my thoughts on that matter.  It's scary to think that this much of my personal information is in the cloud, but I'm probably less sensitive to this concern than the average person. At least now I'll have a "Not Evil" Google clone to compete with my Evil Chinese clone.