HJLR May/Jun 2019

Healthcare Journal of LITTLE ROCK  I  MAY / JUN 2019 27 that patients may withdraw their consent to have their data shared. Heart Monitors What Are They? Heart monitors, oftentimes small, bat- tery-powered devices worn on the body and attached to the skin with electrodes, mea- sure and record the heart’s electrical signals, typically over a few days or weeks, to detect things like irregular heartbeats or abnormal heart rhythms. Some devices implanted under the skin can last up to five years. What Do They Collect? Wearable ones include Holter monitors, wired external devices that attach to the skin, and event recorders, which can track slow or fast heartbeats and fainting spells. Data can also be shared from implanted pacemakers, which keep the heart beating properly for those with arrhythmias. WhoGets the Info? Low resting heart rates or other abnor- mal heart conditions are commonly used by insurance companies to place patients in more expensive rate classes. Children undergoing genetic testing are sometimes outfitted with heart monitors before their diagnosis, increasing the odds that their data is used by insurers. This sharing is the most common complaint cited by theWorld Pri- vacy Forum, a consumer rights group. Blood Glucose Monitors What Are They? Millions of Americans who have diabe- tes are familiar with blood glucose meters, or glucometers, which take a blood sample on a strip of paper and analyze it for glu- cose, or sugar, levels. This allows patients and their doctors to monitor their diabetes so they don’t have complications like heart or kidney disease. Blood glucosemeters are used by the more the 1.2 millionAmericans with Type 1 diabetes, which is usually diag- nosed in children, teens and young adults. What Do They Collect? Blood sugar monitors measure the concentration of glucose in a patient’s blood, a key indicator of proper diabetes management. WhoGets the Info? Diabetes monitoring equipment is sold directly to patients, but many still rely on insurer-provided devices. To get reimburse- ment for blood glucosemeters, health insur- ers will typically ask for at least a month’s worth of blood sugar data. Lifestyle Monitors What Are They? Step counters, medication alerts and trackers, and in-home cameras are among the devices in the increasingly crowded life- style health industry. What Do They Collect? Many health data research apps aremade up of “donated data,” which is provided by consumers and falls outside of federal guidelines that require the sharing of per- sonal health data be disclosed and anony- mized to protect the identity of the patient. This data includes everything fromcounters for the number of steps you take, the calories you eat and the number of flights of stairs you climb tomore traditional healthmetrics, such as pulse and heart rates. WhoGets the Info? It varies by device. But the makers of the Fitbit step counter, for example, say they never sell customer personal data or share personal information unless a user requests it; it is part of a legal process; or it is provided on a “confidential basis”to a third-party cus- tomer support or IT provider. That said, Fit- bit allows users who give consent to share data “with a health insurer or wellness pro- gram,” according to a statement from the company. n But the data that’s generated can also be used in ways that patients don’t neces- sarily expect. It can be packaged and sold for advertising. It can anonymized and used by customer support and informa- tion technology companies. Or it can be shared with health insurers, who may use it to deny reimbursement. Privacy experts warn that data gathered by insurers could also be used to rate individuals’ health care costs and potentially raise their premiums. Patients typically have to give consent for their data to be used — so-called “donated data.” But some patients said they weren’t aware that their informationwas being gath- ered and shared.And once the data is shared, it can be used in a number of ways. Here are a few of the most popular medical devices that can share data with insurers: Continuous Positive Air- way Pressure, or CPAP, Machines What Are They? One of the more popular devices for those with sleep apnea, CPAP machines are covered by insurers after a sleep study confirms the diagnosis. These units, which deliver pressurized air throughmasks worn by patients as they sleep, collect data and transmit it wirelessly. What Do They Collect? It depends on the unit, but CPAPmachines can collect data on the number of hours a patient uses the device, the number of inter- ruptions in sleep and the amount of air that leaks from the mask. WhoGets the Info? The data may be transmitted to the mak- ers or suppliers of the machines. Doctors may use it to assess whether the therapy is effective. Health insurers may receive the data to track whether patients are using their CPAPmachines as directed. They may refuse to reimburse the costs of themachine if the patient doesn’t use it enough. The device maker ResMed said in a statement