The question of who owns personal data just doesn’t seem to go away. It seems to ebb and flow, most recently with the ability to collect data from devices within a Personal Area Network (PAN) or Wireless PAN (WPAN). A recent experience of mine brought this issue up to the forefront again.
However, first the back story. I’ve been a long-term competitive runner since high-school and heart-rate has always been an important part of my training. When I coached High-School Track and Field from 2001-2003 I bought a Suunto sports watch to record time, heart-rate and altitude during my workouts so when I ran with the athletes, I could better monitor our stress levels. It was very informative to get my heart-rate at a glance anytime during workouts and to analyze efforts post-workout with a variety of graphs – particularly heart-rate changes during hill workouts or speed workouts. Of course this was my data and I could move it around (from watch to PC) and share it with whomever I wished. The data came from me and I captured it.
Cycle ahead (pun intended) to the 2010 Tour de France and I was blown-away by how the HTC-Columbia team was sharing their personal data. They had wired themselves with heart-rate monitors, wired their bikes with cadence and wattage sensors, and created a WPAN with a GPS-enabled Android phone using the ANT+ protocol. All their data was uploaded to Google servers via the phone and shared with anyone. What an experience to be able to watch “Le Tour” live online, and in a separate window bring up the real-time data of one of the HTC-Columbia riders to see just how hard the guy is working and where exactly he was in the pack. Utter transparency that I don’t think had been achieved before in sports. [For a great technology review of how this works see DC Rainmaker's blog.]
So now we come to my “beef”, the issue of which is the title picture. I had a newborn daughter in August and the day after Ayla was born the hospital wired her up for a government mandated hearing test – which they didn’t have when my first daughter was born 13 years ago.
According to the American Academy of Pediatrics, hearing loss is one of the most frequently occurring birth defects; approximately 1-3 infants per 1,000 are born with significant hearing loss. So the federal government – via the National Center for Hearing Assessment and Management (NCHAM) – has been pushing states to enact legislation requiring hearing tests. They state that of the more than 4 million infants born in the USA in 2005, 93% were screened for hearing loss. California, where I live and work, requires a hearing screening for newborns (Assembly Bill 2780 of 1998), but has not enacted legislation for who should pay for it. Hum, looks like I’ll have to check the hospital bill for that one. [If you’re interested, this link has more details: http://www.ncsl.org/IssuesResearch/Health/NewbornHearingScreeningLaws/tabid/14382/Default.aspx]
The Dell PC running the test just outside the picture frame could not be photographed – even though it was displaying my daughter’s EEG data – because there were issues around privacy. The professional administering the test said that “there was information displayed on the screen that could compromise the privacy of my daughter’s medical records.” Dare say I didn’t even try to ask for the raw data.
According to the California state Provider Manual published by the Department of Health Care Services [see http://www.dhcs.ca.gov/services/nhsp/Documents/ProvManual.pdf]. It states that:
“A vital part of the NHSP is the exchange of information throughout the hearing screening process. Families will be provided informational materials that are related to the screening process, including the results of the screening. Primary care providers will receive the results of the screenings and diagnostic evaluations of infants under their care.”
Yes, my family did receive the results of the screening – a Pass on the right ear and a Fail on the left ear. (This is a not atypical result due most likely to residual amniotic fluid in the ear. Ayla passed a subsequent test after her discharge from the hospital. ) However, it would be great – even better at the time – to have had diagnostic evaluations of the data. That was one of my main reasons behind wanting to capture some pictures of the screening application in action: Information is knowledge and knowledge is power*. It’s my belief that as individuals we should have access to our medical records, and as parents have access to our children’s medical records up to their age 16 or 18. Fortunately the Obama administration rolled out last July a 5-year plan for moving doctors and hospitals to computerized medical records. This should at least make my belief more possible.
* I had to check my logic here and found a short post that essentially backs me up: http://www.systems-thinking.org/dikw/dikw.htm. Onward along the path to wisdom…
By Phil Brock