In discussing Facebook and the unintended consequence of the power of so much data, Bret Stephens writes in the May 4, 2019 New York Times: “The deeper problem is the overwhelming concentration of technical, financial and moral power in the hands of people who lack the training, experience, wisdom, trustworthiness, humility and incentives to exercise that power responsibly.”

I’ve become more attuned to the dangers of providing an unlimited amount of personal information on social media, keenly aware that I have no idea what others are doing with it and even more aware that I can never retrieve it. The information no longer belongs to me; it has a life of its own that I can never fully erase.

This is true of social media but also of other data repositories. Since my breast cancer diagnosis and treatment in 2006, I now have multiple “health portals” from all my doctors (seven with annual visits and two orthopedic surgeons). Very few of these portals share information, necessitating that I am still the “go-between” for my doctors to all communicate with each other. It may be as simple as not repeating blood work that I just had a few weeks before at another doctor’s office, or more devastating discoveries when the information entered in my electronic records is just plain wrong.

Since the proliferation of electronic health records:

1.     My dentist had me listed as HIV-positive, when I’ve never had bloodwork drawn at her office, and recent pre-surgery bloodwork shows that I am not HIV-positive.

2.     My primary care physician had me listed as “African-American” which I am not (I am white). The receptionist was quick to point out that the mistake was probably made because “African-American” is the first in the list of dropdown choices in their new computer system.

3.     One of my orthopedic surgeons had listed that they counseled me on my weight, encouraging me to exercise more because my BMI was in the “overweight category”. Upon my review, I found out that they had typed in a height of 5’2” instead of 5’6”. Since BMI is a calculated field, it showed me as overweight when in actuality my BMI of 23.9 lists me as “normal weight”. When I asked to have it corrected, they added a note at the bottom of the record, but couldn’t correct my original height because “the computer wouldn’t let them change information after it is signed.”

4.     A few weeks ago, I received a form letter from the institution that does my breast imaging studies and mammograms. It said, “the date of your last breast imaging study was April 25, 2018. This is just a reminder that it will soon be time for your annual mammogram. Please contact central scheduling to schedule your screening mammogram.” What is wrong with a friendly reminder like that? Well, I already had a mammogram in October 2018 and have my next annual one scheduled for October 2019 at the same institution where I have my Breast MRI. And because of my cancer history, I don’t have a screening mammogram, I have a diagnostic mammogram which requires a doctor’s order and can’t be self-scheduled. Why wouldn’t one institution’s computer system know all this information and make the connection rather than sending me a form reminder letter full of incorrect information?

5.     When I called to make a routine appointment recently, another doctor’s office said, “Are you a new patient? We don’t have any record that you’ve been seen in this practice before.” Well, I’ve only been coming to this doctor for 13 years for an annual checkup. I always spell my name when I introduce myself on the call, “NOLEN”. “Oh,” she said, “I must have misspelled it as NOLAN. There you are.” I wonder if I do have profiles in some computer systems both under NOLEN and NOLAN.

Maybe, NOLAN is the African-American who is HIV-positive, 5’2” and slightly overweight who needs to schedule a screening mammogram because she is over 40.

Beware of data in the “hands of people who lack the training, experience, wisdom, trustworthiness, humility and incentives to exercise that power responsibly.”

Blessings, my friend,
Agatha

#NYT, #healthcareIT