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April 4, 2019

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Patient empowerment is a big buzzword these days, but what does it really mean? Let’s look at citizen science—citizen science is driven by individuals’ needs. Seeing a lack in what the traditional healthcare model has to offer, ordinary citizens band together (or work alone) to experiment with their bodies, foods, exercise, and sleep to find what works best for them.

Citizen science is sometimes driven by deficits in our healthcare system, and it is often an attempt to center the patient—or the individual—in finding health solutions. By naming the problem or deficit and experimenting and finding solutions, individuals become empowered to take charge of their health. In this sense, citizen science is a model for what patient empowerment looks like.

Citizen Science for Health believes that empowerment comes from knowledge and from the ability to act on that knowledge. Our healthcare system as it currently stands is broken—the obstacles and interests that come before and between the doctor and the patient prevent many of us—especially those battling diseases—from receiving the kind of care that is possible.

So, what does patient empowerment look like in the future?

•    Patient empowerment looks like the patients’ needs, concerns, and goals being at the center of treatment rather than financial or political interests.

•    Patient empowerment looks like transparent access to data and knowledge through tests obtained through doctor’s care (like blood panels) and outside of doctor’s care (like gut biome tests and genetic data testing).

•    Patient empowerment means providers treating patients’ concerns, pain, and symptoms with respect regardless of age, race, class, gender, and national origin.

•    Patient empowerment means having knowledge and using it collaboratively with one’s provider.

•    When patients’ concerns are dismissed, patient empowerment is asking, “If you are not going to do that test, can you make a note in my chart of the symptom and the fact that you decided not to do the test?”

•    Patient empowerment means access to an abundance of clinical trials, the information coming out of them, and out of other research studies.

 

Ultimately, knowledge is power.

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