What Is a Self-Advocate? Here's How To Better Help Yourself
The amount of health information available is vast, and it can be a powerful tool for taking control of your health, especially if you have chronic medical conditions. Knowledge is power. It's a mantra you've likely heard often, but this phrase proves true regarding your health.
But navigating the overwhelming sea of medical studies, reports and analyses without feeling overwhelmed or lost is a mammoth task. It's easy to get frustrated and confused about where to turn and who to trust.
How can you confidently and productively leverage this knowledge without a medical background to become a strong self-advocate for your health and well-being?
How can search engines help you research your condition?
Not long ago, if you wanted access to a medical library, you'd have to go to a hospital, try to find the library tucked away somewhere in a back corner, ask the librarian for help accessing articles and hope they had something recent that could be useful.
Online academic journals have completely revolutionized how we consume information. But that isn't always a good thing. Search engines make looking up medical information easy. It's accessible and the go-to for most people when they want to know more about anything, including health concerns.
Search engines "prioritize websites that take advantage of search engine optimization algorithms rather than websites maintained by credible authorities providing quality evidence-based information," said David Zacharias, M.D., M.P.H., a Mayo Clinic and Harvard-trained psychologist and clinical instructor at the University of Washington Medical Center in Seattle.
The most credible information may only occasionally appear at the top of your search results.
Many people have ended up on a bogus health website believing they have a brain tumor when, really, that kaleidoscoping in their eye was a symptom of a migraine. Rely on quality sources, such as Giddy, that publish medically reviewed material for accurate information.
How can you find quality health research online?
There are paths through the jungle of health information that can lead you to reliable sources. You likely already know Giddy contains medically reviewed information, and have seen the reviewing physician's name below the headline on every applicable title.
Where else can you find quality health content?
Here are handy tips for conducting quality health research online, according to Zacharias:
- Government websites ending in .gov (like CDC.gov or nih.gov) are fantastic starting points. These sites are maintained by governmental organizations and healthcare industry experts, ensuring the information is accurate and up-to-date.
- Look for consensus guideline statements issued by national medical specialty societies recognized by the American Medical Association. Organizations such as the American Heart Association and the American Psychiatric Association compile these guidelines. They serve as a compass, pointing towards standardized and trusted treatment methods in the respective specialties.
- Prestigious medical centers such as Mayo Clinic and Johns Hopkins have libraries of health information from their physicians on their websites. They may be written in layperson's terms and are an excellent resource for understanding different health conditions and treatments.
- For intrepid health explorers, there's PubMed.gov. This database hosts a sea of scientific literature. It may seem complex at first, but you'll find that it's an invaluable resource. Focus on systematic review articles, Zacharias recommended. These articles compile all available research on a specific topic, making it easier to digest.
- Try to look for studies within the last five years. Medical research is long and slow, so five years is a suitable time frame. Remember, medical studies often show a sex bias, so it's essential to look for studies about your biological sex. If there aren't any, highlight this point with your doctor.
How can you better communicate with your doctor?
Advocacy is the ability to speak up about your healthcare. You've acquired the proper knowledge and found a study that could impact your treatment. What next? It's time for a dialogue with your doctor.
"I would recommend that patients either print or email the study they want to discuss with their physician so the doctor has context," said Andrea Paul, M.D., medical advisor to Illuminate Labs in Ocala, Florida.
This allows your physician the opportunity to do a quick scan or decide they need more time. A good self-advocate understands that medical decisions may take a little time.
Approach this conversation as a discussion rather than a demand: "I read about this in [name] journal and on the [name] medical website. Do you know anything about this treatment and whether it would be an option for me, or am I missing something?" said Katelyn Carey, B.S.N., R.N., a nurse and medical educator based in Exeter, New Hampshire.
How can patients and doctors become partners?
This proactive approach by patients might seem disruptive to the traditional patient-doctor dynamic. That's not necessarily a bad thing.
"The average physician is 14 years behind on the current medical literature," said Jason Winkelmann, N.D., D.C., a specialist in naturopathic medicine, based in Westminster, Colorado. "Some physicians may be annoyed by you doing this, which indicates that that physician is not right for you."
Finding a sex-positive OBGYN with whom you can feel open talking about the medical side of your kinks or identifying the right doctors to help you transition can be life-changing.
Your doctor should be a partner in your healthcare journey, not an adversary. Finding the right family doctor or rheumatologist is equally essential. You could have a long-term relationship with this person. You should feel like you have the ability to speak to your doctor frankly about your health.
"Patients who take their care into their own hands help themselves, help us doctors and help other people as well," Winkelmann said.
You're ultimately only responsible for your healthcare journey, but knowing that your advocacy might be able to help someone else can be an excellent motivator to push past the discomfort that comes from speaking to your doctor.
Your doctor may be an expert on your health condition, but you're an expert on yourself.
The bottom line
If what you've been advised or told to do isn't yielding the results you want, advocating for yourself is the kindest and most compassionate thing you can do. Take charge of your health by engaging in quality health research and open, respectful communication with your doctor.
Healthcare is a shared responsibility. You can actively participate in this journey and learn self advocacy. The first step is becoming a well-informed patient.