Why We Should All Be ‘Citizen Scientists’ When It Comes To Staying Healthy

You could say that Sharon Terry wouldn’t take “no” for an answer, but the truth is that for years she was never asked a question or meaningfully included in the conversation about her children’s health in the first place.

But for years she didn’t even have the option to say “no” or much of anything else.

Terry and her husband found themselves quickly relegated to the sidelines when their son and daughter were diagnosed with the rare genetic disorder pseudoxanthoma elasticum, or PXE, while doctors and specialists took their traditional role as the authority figures in guiding care.

The thing is, when a patient has a condition that’s rare and incurable, the disconnected nature of the U.S. health care system turns them into a pinball flying all over the place with even less coordination than normal.

The Terrys’ work as “citizen scientists” has made them heroes to many in the medical research world because they begged and borrowed lab time, trained themselves in the basics and more of PXE and created clinical trials that show promise in finding a cure for the condition. And as president and CEO of the Genetic Alliance coalition of 10,000 smaller organizations, Sharon Terry has become the model of what is possible when patients and their families decide to use every resource possible to treat and cure a disease.

But the point that kept resonating during her Vital Signs lecture for the Dell Medical School was her insistence that her children and family be included and the focal point of all decision making about their course of care. That’s a big change from the Physician-As-Authority model that’s been the standard for more than a century.

When you stand back to consider that structure, though, it puts the patient in an inferior position of waiting for the all-knowing health care professional to pronounce a decision and dispense with commands for care before dashing out of the room. It’s not exactly Oliver Twist meekly asking Mr. Bumble for more supper, but it’s somewhere on that spectrum.

While not discounting the knowledge and training of physicians, specialists, nurses and others, Terry’s argument is that the person is often overlooked and forgotten in the course of practicing medicine.

This was especially true in her case since her family was in need to world-class specialists to try to treat her children, but it’s not at all uncommon for the patient to become a steerage passenger on their health care journey. In actuality they should be a co-pilot, or at least a navigator, since no one is more in tune with a person’s medical condition than the patient themselves.

Of course having a patient play a central role in their own care requires the availability of as much trustworthy information as possible so they can make wise decisions in utilizing the 90 percent of care that happens outside of a clinic. This is another bone that Terry picks with the traditional health care establishment since there is not nearly enough sharing of information, test results and treatment routines to build up the necessary body of knowledge.

“Better communication lowers cost and improves outcomes” was one of the tenets of Terry’s discussion and it guides her everyday. That statement seems painfully obvious, but the journey she’s taken into patient advocacy with her family has illustrated how often two-way communication is forgotten in health care.

She fought to be heard saying “no,” and is still pushing for a paradigm shift where the patient is on equal ground and valued as an authority at all times. It’s a cause we should all get behind, whether we’re a patient or a provider trying to do the best job possible.