Patient advocate: New website is a medical library at your fingertips
There’s a lot of medical misinformation out there, much of it promulgated by non-medical individuals based on nothing more than assumptions and unwarranted conclusions.
But what if you could find published, peer-reviewed answers to your medical questions, written in everyday language? Good news. You can!
One of the speakers at a recent patient advocacy summit I hosted was Erika Warren, a Chicagoan, Northwestern University graduate, and partner in a new venture called Inciteful Med (IncitefulMed.com), just launched earlier this year. I wanted to share it with you because, as I like to say, knowledge is power. Inciteful Med lets you research a medical question and come to doctors’ appointments ready to have a meaningful discussion.
This is a beneficial use of artificial intelligence and machine learning. Inciteful Med is updated weekly with peer-reviewed research that appears in such online sources as PubMed, a service of the National Institutes of Health.
“We provide patients and doctors with the latest literature in an easy-to-understand format, helping doctors and patients make informed choices,” Erika says.
Like my patient advocacy practice, Inciteful Med grew out of a personal experience. Erika’s partner, Mike Weishuhn, had a family member with a potentially serious health issue. Rather than taking the wait-and-see approach the doctor had advised, he used his skills as a data engineer to find a paper published in the U.K. that gave them new information and a reason to seek a second opinion.
“It showed us two things,” Erika says. “First, the importance of advocacy and, second, the difficulty of finding reliable, personalized information. That experience changed everything for their family and sparked our mission to make medical research accessible, so more patients and families can shape their care and change their lives.”
And so Inciteful Med was born.
Anyone can use the website anonymously to research up to five questions a day. Creating an account lets you ask an unlimited number of questions.
Users can also upload their medical records to have them analyzed and receive personalized results from the latest research. For their users’ peace of mind, the company will soon be HIPAA-compliant.
The website is free to use for now. Wishing it to remain independent, they don’t want advertising dollars from pharmaceutical companies. It may one day become donor-supported like Wikipedia or offer subscriptions.
Neither Erika nor Mike has a medical background, and they stress that patients should use the information on Inciteful Med in collaboration with their health care providers.
“Mike’s and my background is in education technology, providing education tools for teachers trying to help students learn and feel confident. In many ways, Inciteful Med is similar to that work, but for patients and doctors,” she says. “Inciteful Med inspires confidence. People want to be heard and supported and know their questions aren’t dumb.”
Inciteful Med can also be consulted by providers, who can’t possibly be familiar with all of the latest research and clinical trials. Information can take years to move from the researchers’ labs to your bedside.
“Our health care system makes it hard for even dedicated doctors to keep up,” Erika says. “Different priorities, red tape and slow adoption of new technology mean important medical advances take too long to reach patients.”
Here are some ways to make Inciteful Med work for you:
• Given a new diagnosis? Ask Inciteful Med about the symptoms associated with your diagnosis and if the symptoms could be associated with a different condition.
• Prescribed a new medication? Ask Inciteful Med if the drug has been shown to be an effective treatment for your condition.
• Concerned about the safety of a vaccine? Ask it to show you the latest studies.
• Experiencing a side effect after a medical procedure or medication? Ask whether what you’re experiencing is a known side effect and what the risks are.
• Interested in finding out if there are new treatments for your condition? Ask Inciteful Med to tell you about any recent advances or clinical trials.
In addition to answering your initial questions, the website returns a number of related questions you may want to ask, letting you delve further into the research.
I often talk about making the most of the time you have with your doctor — coming prepared with written questions and specific concerns. Taking a few minutes to do research on IncitefulMed.com could give you a place to start the conversation with your providers.
• Teri (Dreher) Frykenberg, R.N., a registered nurse and board-certified patient advocate, is the founder of www.NurseAdvocateEntrepreneur.com, which trains medical professionals to become successful private patient advocates. She is the author of “How to Be a Healthcare Advocate for Yourself & Your Loved Ones” and her new book, “Advocating Well: Strategies for Finding Strength and Understanding in Health Care,” available at Amazon.com. Contact her at Teri@NurseAdvocateEntrepreneur.com to set up a free phone consultation.