Monique Keiran: Digital health records raise questions

Several years ago, the receptionist at a local LifeLabs clinic stunned me when she suggested I check the results of my blood tests online.

My surprise stemmed from an exchange with the medical office assistant at my family doctor’s office just two years before. I had offered to take my file with me to the exam room.

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At no time and under no circumstances, the assistant said, would I be allowed to handle, open or look into my medical file.

“NO,” she elaborated, speaking in all caps.

My reaction included disbelief and a mild, prickly outrage. “But it’s my information!”

My secondary reaction was: “What are you hiding from me?” Although such thoughts might or might not indicate paranoia according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, they are hardly conducive to relationships built on trust — even physician–patient relationships.

So to be freely offered my health records signalled the start of a new era of patient (often impatient) involvement in my own health care. Being allowed access to the raw data was empowering — even though they comprised lists of numbers and symbols with little meaning to my undoctor-ed eyes.

Fast forward to 2016. It takes conscious effort and decisive choice to avoid having one’s health constantly monitored. With all the apps, devices and e-clothing that promise to help a person stop smoking; lose weight; monitor blood sugar, blood pressure, heart rate, sleep or activity; maintain peak cognitive performance; train for a marathon; become a gourmet chef; or what-have-you — that keep constant watch, chivvy, chide and offer advice — windows of opportunity for unknowing self-destruction via lifestyle are quickly closing.

Download an app to your phone or buy a device, and health measurements once collected by doctors only intermittently give way to continuous checkups. Results are interpreted via computer algorithms, based on averages and means gleaned from similar data from thousands or millions of similar users of similar apps and devices. Reports can be delivered to you via email or instant messaging.

Health-care providers, hospitals and health authorities are coming on board in their own way. More than 80 per cent of B.C.’s doctors file patient records electronically. Efforts to integrate such records with hospital records in health regions are said to be underway, despite speed bumps such as the ending of the IBM contract last year to develop a system for some Vancouver-area hospitals, physicians and health-care facilities. Tests by some at-risk B.C. populations can be ordered online, and online medical consults are possible between residents in rural or remote regions and specialists in big cities.

Regular events such as the Data Effects Conference, which recently took place in Vancouver, and Hacking Health camps bring tech and health-care professionals together to find health-care solutions. This yields more apps, devices, programs and personalized care options, as well as valuable and otherwise unlikely insights into population health patterns and trends that can be gained from aggregated app data.

Digital health and wellness is also entering the workplace. Some employers encourage employees to sign up for corporate digital health programs that monitor participant’s vitals and activity 24/7.

Although presented as a benign benefit, the healthy-worker movement raises interesting questions. Can employers make participation mandatory? Just how anonymous are the data collected, and what measures ensure privacy and security? What happens if privacy is breached and employers learn of detrimental health behaviours? Would diets comprising Big Macs and milkshakes directly affect opportunities for advancement?

During the early Industrial Revolution, factory owners controlled most aspects of their workers’ lives. They provided housing and deducted rent from wages. Wages were paid in company chits. Chits were accepted only at company stores. Company stores vastly overpriced goods. Workers had no choice but to run up debt that they couldn’t pay off at company wages. These employers created systems of indebted obligation and indentured labour.

Over time, labour unions and laws created and enforced boundaries and acceptable standards. Now, 150 years on, we seem to be flirting with a related question. How much business does business have in employees’ private lives?

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