Why Owning your Medical Data is a Human Right

Published: July 9th 2021

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People today have access to all sorts of personal information right at their fingertips.

The digital environment has provided us with easy access to everything. With just a click of a button, we’ll know all about our cell phone plans, our data allowances, subscription information for streaming services, utility bills, and even when our cars need servicing.

But what about our medical records?

Easily obtainable data empowers people to gain access at any given time and place to make more informed decisions. Surprisingly, one of the most important pieces of information that we commonly overlook and take for granted is also one of the most critical – our medical data. These records contain vital information about our health history, status, and potential concerns.

While everyone is entitled to have control over their own health and body, most people are actually at a disadvantage due to a lack of access to their medical records. Having ownership of a copy of your own medical data should be considered a basic human right. Right now, unfortunately, it’s not the case.

The truth behind the world’s healthcare system

According to the World Health Organization (WHO), healthcare is a basic human right, which obligates all global states to ensure sufficient access to all health-related information. The challenge is that extracting medical records can be tedious, confusing, and

The challenge is that extracting medical records can be tedious, confusing, and overwhelming.

But it shouldn’t have to be. Consider these two scenarios:

  • Research shows that over 11 million Americans are caring for an adult family member due to medical needs or disabilities, while also caring for children at home. Providing care for your sick family member while managing childcare can be hard to balance. Access to medical records can help you make more informed decisions and offer peace of mind.
  • People should have the right to decide who to enlist for their health needs. Switching healthcare providers is frequently a difficult process in many parts of the world, especially in the U.S. The commonly used PPO system often requires spending a lot of time making requests to different doctors and hospitals just to obtain updated medical data. Patients may have to wait for a month or more to get hold of this information and often pay fees for copying, admin, and mailing.

So, even when patients have the desire to attain their medical records, it's often extremely difficult to get them.

While we concede that medical institutions are “custodians” of this data, a full copy should be the property of the patient.

Why data hoarding violates human rights

Data can hold power and knowledge, which is why medical institutions and/or the electronic medical record companies who service them, often hoard their patients’ records. They do this to mine the data for insights, to monetize it, and even sell it.

As long as Personal Health Information (PHI) data is anonymized, this is legal to do. This can hinder healthcare and take control away from an individual. The great irony in this story is that medical records are intended to help medical practitioners and patients choose the best plan of care. But without sufficient access, this is hard to do.

Opponents of health record ownership claim that medical records are too difficult for patients to interpret. Proponents argue that even if individuals simply hold their records so they can take them to healthcare professionals without difficulty, the goal will be met.

Do you have access to your medical data?

Obtaining a copy of your medical data should not be a struggle. The responsibility of enabling seamless data transfer – easily and transparently – is on healthcare institutions.

Want to know more about the types of medical data you should own?

Read our next blog, "Six Types of Medical Data You Should Own: A 360-Degree View of Your Health", where we talk about the six types of medical data everyone should own and why.

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