Reviewed By: Dr. Kurt Kloss, MD
Last Reviewed Date: Sep 25, 2018
Last Modified Date: Sep 25, 2018
Published Date: Sep 03, 2017
What You Should Know: Tracking Your Health Data
Can Your Doctor Use It?
Gadgets are everywhere and it’s not likely they are going away. Nor are the Internet and the virtual, nonstop flood of information it provides. The Net, a global system of interconnected networks that link to billions of devices worldwide, has existed for more than half a century. What are relatively new – and still untested - are apps and internet sites that collect healthcare data, raising more questions than answers.
It’s a new world that some say will disrupt healthcare as we know it. Even the language is evolving. We now have “wearables” like “FitBits” and “Apple Watches,” creating a market of more than 50,000 health apps estimated at a worth of more than $4 billion and growing.
In fact, healthcare providers say more patients are coming in to see them bringing information they’ve collected from consumer medical devices that range from “fit bands” which measure the number of daily steps you take, to phone apps that record the number of calories you consume.
Instead of drug reps shadowing doctor’s offices, it’s now start-up technology providers, offering new products that spit out untold amounts of digital data related to patient care.
But how beneficial is all the new information these devices collect? Can your healthcare provider actually use it, or is the collected data just one more stack of paperwork to analyze? More important, how safe is our private healthcare data and can it be used against us? Only time will tell.
Who tracks their health online and why?
According to a 2013 Pew Research Center report, seven in ten U.S. adults track some type of health information about themselves or a loved one. More than 50 percent of the information recorded digitally relates to weight, diet and exercise. Another 33 percent indicates blood pressure, sleep habits and minor health concerns like common headaches. Those living with a chronic condition, the report concludes, are more likely to track a health symptom or an indicator. For instance, about 78 percent of trackers have high blood pressure, which they monitor and about 45 percent have diabetes in which they track their blood sugar levels.
Others report they track health data “in their head” or in a journal that requires writing down the information. About half of all “trackers” update their records regularly and – interestingly - most don’t share the data with anyone. But trackers with two or more conditions are more likely than other groups to keep track, and more likely to share the information.
Why do people track their health data? From a nationwide survey of 3,014 adults conducted by the Pew Research Center:
- About 46 percent say it helps motivate them to maintain better health, or the health of a loved one.
- About 40 percent report it leads to new questions they can ask their healthcare provider.
- About one-third said it affects decisions about how to treat an illness or condition.
Should I share my fitness data with my healthcare provider?
The answer varies. Some health experts say that providing your doctor data from fitness trackers and health apps, which can be inserted into electronic patient records, might help in detecting a health problem sooner, reducing risk of complications.
In one New Jersey study, a small number of patients at risk for heart failure were asked to use a fitness tracker and record their dietary intake. The information was automatically transferred to their patient records. While the potential is there to get patients more involved with their own care and new technology can make that easier, other healthcare specialists say it’s unclear how trackers and apps improve patient care. In addition, there are still many consumer privacy and security issues to address, not to mention compatibility among all devices, before clear advantages can be established.
Others say fitness apps are just a tool, one of many, that may help and may not. And nearly all healthcare providers agree – digital data doesn’t replace a face-to-face visit.
Is sharing my health data online safe?
Thanks to the Health Insurance Portability and Accountability Act (HIPPA) Privacy Rule, there are limits on who can access and examine your health information without your permission. It can be used and shared with doctors and hospitals, family, friends or others that you, as the patient, specify, and the police in special cases, or government agencies involved in reporting certain public illnesses. However, you must receive a notice that explains how an individual or agency will use and share your health information upon a first visit to a physician or in the mail. (You can learn more about HIPPA at www.healthit.gov).
But when it comes to Internet security, what’s truly safe since we’re all connected? Your best safety net is to educate yourself about cyber security so you can be a responsible Internet user, protecting your digital data from viruses and other threats. A good place to start is the National Cyber Security Alliance, whose mission is to empower and educate our digital society. Visit www.staysafeonline.org for details.
Can doctors really use digital healthcare information?
In a 2015 interview for National Public Radio (NPR) in which several healthcare providers were asked their opinion of the increasing amount of health data provided by way of digital gadgets, one whose patient arrived with numerous pages of Excel spread sheets was quoted as saying “all the information can be overwhelming, and going through it was not feasible.” He went on to say that information from spreadsheets and devices like “FitBits” or other health app miss the subtleties one gets from watching a person’s body language or tone of voice.
Another said that just because an app is readily available, doesn’t mean the information it provides is useful or accurate. FitBits and Apple Watches, for example, are not yet regulated by the Food and Drug Administration (FDA). They are considered, instead, “low-risk” devices that promote general wellness. Only medical devices intended for diagnostic purposes or treatment of disease require FDA approval.
Overall, more research and hard data through validation studies are needed before digital devices get a high-five. Pilot studies are currently underway in some hospitals, including one in which Parkinson’s disease patients use wearables that help them track and manage their symptoms. A digital diary tracks how tremors respond to changes in diet, sleep and medication patterns. Results, to date, have not yet determined the viability of using digital devices.
What’s the future of online health data?
It can be scary to realize that all of the medical information formerly (and safely) locked in your healthcare provider’s private office can be online now and forevermore. Your healthcare data comes from a variety of sources, not the least of which includes electronic medical devices. And that isn’t likely to change.
Though these devices have been around since 1958, when the first computer-driven pacemaker was inserted into a patient, Implantable Medical Devices (IMDs) now include Wi-Fi pacemakers, defibrillators, diabetic pumps, ear implants and neuro-stimulators. Today, it’s estimated that up to 300,000 patients receive wireless IMDs. That means even though the technological advances have brought breathtaking benefits for patients, the more computers our bodies’ house, the more opportunities are created for others to hack and subvert the information.
Imagine a future in which someone could remotely hack your pacemaker and threaten to deliver a lethal jolt of electricity unless you pay up? Or someone gains access to all of your private, confidential medical information and uses it against you? In his new book, Future Crimes (Doubleday, 2015) author Marc Goodman says while the potential for diverting the volume of information about our health and our lives is a real and growing threat, we must all take responsibility for our devices, from allowing only authorized programs to run on our systems, to updating software and antiviral programs and restricting administrative privileges. (A full list of safety tips are provided in the book, including simple steps that can help provide up to 85 percent protection against digital threats).
On the public health side, he says we need the equivalent of a “cyber CDC” and a more coordinated, comprehensive approach to reporting and preventing disruptive and malicious cyber hacking.
The hacks of tomorrow, adds Goodman, will affect everything from our televisions to our implantable medical devices. The innovation can’t and shouldn’t be stopped. But by taking control of our devices and the information we share, we are taking better control of our private and public health well into the future.
Sources: Pew Research Center, “Tracking Your Health,” 1/28/13; Huffington Post article “Why You Should Give Your Doctor Access to Your Fitness Tracking Data,” 2/20/15; HealthIT.gov, 01/15/13; National Public Radio “Sure You Can Track Your Health Data But Can Your Doctor Use It? 01/19/15; www.staysafeonline.org; www.usatoday.com “How to Keep Your Private Information Safe,” 01/12/14; Future Crimes, Marc Goodman, Doubleday, 2015