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Do You Own Your Data? What You Need to Know About Your Health Information

Your body is an amazing machine that is constantly producing information. If interpreted properly, your health data can tell you exactly what your body needs to be in a state of wellness. The problem, though, is that your health information is stored in many places – and whether or not you own your data is a major concern. 

People don’t often think about the ownership of their health data. Many assume that the information their body generates belongs to them. The Health Insurance Portability and Accountability Act (HIPAA) is the law that regulates the access you have to your health information. You have the right to access to and get a copy of your health information, but access does not equate to ownership. Though the level of access varies between states, the majority of individuals do not own their health data. 

Excellence Industries Do You Own Your Data? What You Need to Know About Your Health Information

An estimated 85% of medical professionals have made the switch from color-coded file folders to electronic health records (EHRs) for managing patients’ health information. EHRs make administering and receiving medical care faster and easier, but not necessarily safer. Associated risks include identity theft through cybersecurity breaches, the selling of your personal information without your consent, and a lack of insight and control over your own health. 

Learn where your health data resides, what happens when you don’t own your health data, and the benefits of being able to interpret your health data points for a complete picture of your health. 

Who Owns Your Health Data?

Information is the most valuable currency today, and personal health information (PHI) is the most vulnerable data to cybersecurity breaches. What are hackers looking for? Everything about you from social security numbers and insurance details to addresses and financial information. Medical records can sell for up to $1000 on the dark web.

Data is only valuable when interpreted and recorded. If you notice recurring stomach pain after drinking caffeinated beverages, for example, that’s an observation. When you report the pain to your doctor and they make a note of it in your file, the observation becomes data. Data are considered property and thus fall under property laws. In the above scenario, the doctor recorded the information, so your health data belongs to them.

Increasingly, health information also resides with the makers of the wearable technologies, apps, and devices used to track and monitor your health. Your morning run tracked in Strava and your heart rate recorded on your Fitbit or Apple Watch – all that data goes back to each respective company. 

For people with more serious health conditions, such as people with diabetes who depend on medical technology to monitor their blood sugar levels or a cardiac patient with a pacemaker, their data are owned by the technology companies who made the devices. The information is accessible to the wearers and users, of course, but not owned. 

The Business of Health

The health industry is big business. Information digitization is good for business, but is it good for your health? You should understand how your own health data is being used and shared. There is a multi-billion dollar industry based on big pharmaceutical and medical research companies buying and selling your information. Without your knowledge or consent.

Ethics aside, selling patients’ health data is legal. Once a person has been de-identified from the data (the identifiable information has been removed from the record), their data is no longer protected by HIPAA. Your personal health information is being used, and someone is profiting off of it – but not you.

Excellence Industries Do You Own Your Data? What You Need to Know About Your Health Information

When you own your data, not only do you have control over what it is used for, but you also treat your health care data as a digital asset. In other words, you can ensure all your information is correct and decide whether you want to donate it or sell it for research and your benefit. 

A Holistic Approach to Understanding Your Health Data

Generally, when you feel unwell, you see a doctor. The doctor checks your temperature, blood pressure, and heart rate. If they have concerns or notice irregularities, they may send you off for blood tests, urine samples, an ultrasound, etc. Your test results will then provide a clue as to what’s ailing you, but they likely won’t be conclusive. You may need to undergo more testing to determine the root cause of your illness. Consequently, the necessary treatment may be delayed.

Western medicine relies on science, specimens, and technology. What often aren’t factored into your health are other less tangible factors such as the amount of time your body is at rest versus in a state of high adrenaline, or the number of steps you take daily in relation to your migraines. At the same time, apps and devices are popular for tracking workouts, but on their own, the data is meaningless. Only when all the pieces of your health data are looked at holistically can you really make use of it.

When a medical professional has all the information from disparate sources, the multiple data points have a far better, and faster, chance of pointing to a conclusive cause. That means quicker treatment and a greater likelihood that treatment will be effective.

Owning Your Own Data

People tend to be more invested in the long-term maintenance and care for the things they own. Like a home or car, your body and mind require upkeep and preventative care, yet the responsibility of your health primarily rests in the hands of your doctors because they own health your data. You know your body better than anyone, and if you owned all the pieces of your health data, you would then be able to interpret what the data is telling you and have full control over where that information is shared.

Do you have any questions about your personal health data? Leave a comment below!