A scan of Steven Keating’s brain found a slight abnormality. He was told it was nothing to worry about, but that it should be monitored.
He took that upon himself, reading and studying brain structure and function. He received a follow up scan in 2010, five years after the abnormality was found, that showed nothing unusual either.
But from his own research he knew the abnormality was near his olfactory center. When he started smelling vinegar in 2014 he thought he might be having “smell seizures.”
Keating urged his doctors to do an MRI of his brain – they hadn’t suggested it themselves – and, a few weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball,
By that point Keating, a 26-year-old doctoral student at the Massachusetts Institute of Technology’s Media Lab, had collected an estimated 70 gigabytes of his patient data, he told The New York Times.
His doctors and medical experts now view him as a citizen of the future, someone who in this age of high deductibles and health saving accounts took control of his own medical information and became his own best advocate for what might have been life-saving surgery.
When people take a more active role in their care, they tend to do better. Yet they often won’t speak up for themselves
Some tips for being a better self-advocate include being prepared, which means collecting accurate and current health information that might help you understand your health.
You should also ask your healthcare providers questions. The day of the authoritarian doctor is over, and the doctors themselves would rather have patients who want to be part of their overall care, anyway.
You have the right to ask as many questions as often as you need until you fully understand. But, avoid “doorknob complaints,” or things you remember as you’re walking out the door. If you’re prepared you ask your questions when there’s plenty of time left in your appointment.
A third suggestion is communicating your concerns and desires. That means asserting yourself if you think the care you’re getting could be better or there’s something you want your doctor to consider.
The fourth suggestion is reviewing your health records. By law, you have a right to copies of your medical record from any place you receive treatment, often via an online patient portal.
“The end result of advocacy is empowerment,” writes Valorie Bender, CWPM. “Advocacy makes you more than just a number or statistic; you become a force to be reckoned with, a questioner. And there is great comfort in answers that make sense to you.”
If you’re in the hospital, Mount Sinai Hospital in Toronto suggests bringing a pen and paper to write down questions and ask for answers. It also suggests keeping a journal if your healthcare experience is long and involves different doctors over a “prolonged period of time.”
Ask healthcare providers for their names and titles, and write them down. Ask what tests and procedures you are having and why.
Know when your doctor’s rounds will be and have a family member or friend present to hear what the doctor has to say, and to help you ask questions. You’ll also have someone to discuss the information with when your healthcare team leaves.
You should also know when you need a second opinion. One in 20 Americans have had outpatient diagnostic errors, according to the Agency for Healthcare Research and Quality. Even if you’re comfortable with your doctor’s diagnosis, the opinion of another doctor might save you money, reduce your stress, and lead to better care.
“There has been a solid, steady push over recent years toward patient empowerment,” says Linda Adler, CEO of Pathfinders Medical Advocacy and Consulting. “It’s been largely encouraged by dedicated patients and some providers who believe that health care isn’t only a right, but that people should have greater control over what happens to their own bodies.”
September 08, 2016
Janet O’Dell, RN