Who owns your health data? You may be surprised

Digital Image by Sean Locke Digital Planet Design www.digitalplanetdesign.com

There is a big push to make health data more transparent so that people can make better choices.

There’s also a push to make health care data more transparent to improve the cost and efficiencies of how health care is delivered.

If you’ve been to your doctor recently, you’ve probably seen or heard that his or her office is in the midst of implementing electronic medical records.  The goal of these initiatives is so that physicians can ultimately provide better treatment.

In fact, by 2014 doctors will be required to have electronic health records in place.  There are a lot of questions coming up as to who owns your data; and while it may seem simple, it’s not that straight-forward.

Ownership of data is a sensitive issue, and consumers should understand what their rights truly are.

When you go to the doctor and have an examination done, previously (and maybe even sometimes, now) your doctor would hand write a note, or dictate a note, into your chart.  Today, your doctor will likely type an entry into your electronic records, which you can view online.

Under federal and state laws, patients have legal privacy security and accuracy rights related to their health information. But once the information is entered into the system, your doctor becomes the legal custodian of your record and is given specific legal rights and duties relating to the possession and protection of this record.

Consumers do have privacy rights protecting their records, as well as accuracy rights, and if they notice any errors, they could suggest corrections or edits, but they will not be able to do so on their own.   In addition, consumers also have broad , but not unlimited rights, to the disclosure of information from the medical records to third parties.

If a copy of the medical record is provided to the patient, they may delete that copy, but the master record with the doctor cannot be deleted.   It is also important to understand that while the patient has the right to append their medical record under HIPAA, the law does not require this amendment impact the master version of the consumer’s record, but can reside somewhere within the file.

Doctors are allowed to correct their copy of the electronic medical records provided they maintain a copy of the incorrect version.

There will be even greater challenges that come up as it pertains to medical claims data.   Currently, if you get insurance coverage through your employer, it is the employer who has the rights to that claims data, and you, as the employee, will be able to also access those claims.

In the health insurance marketplaces, consumers will have to ensure privacy and control of their data.  Suppose you switch from one insurance carrier to another in the marketplaces, how will you be able to keep the claims from your previous carrier and where will that information be stored?

To further complicate the situation, there is a renewed focus on wellness and prevention initiatives that creates new issues with data control and privacy.  Assume the example of an employee who is participating in a corporate wellness program and is tracking his or her fitness routine and diet through a device and/or iPhone app.  Who owns the data for that employee?  Is it the employer, who is paying for the corporate wellness program?  Is it the device manufacturer? Is it Apple?  Is it the consumer?  Is it the insurance company?

The most pragmatic answer to this is, of course, the consumer, as the prime owner of any sensitive health data.

The jury is still out, if any of the other parties mentioned above could, and will, claim rights to this data for purposes of setting insurance premiums, co-payments and advertisement purposes.

There is a whole new industry exploding around the phenomenon of Big Data.    Companies from Facebook to Twitter to Amazon all use Big Data as its core asset to drive revenue.  The amount of information Facebook gleans about an individual every time they click on “Like” is extraordinary.  When it comes to health care, the sensitivities are much greater, but in this new environment of free markets and transparency, you can expect fierce battles over the ownership of your personal data.