|Dario Dieguez, Jr., Ph.D.|
|Jenny Thorn Palter|
The Initiative’s goals are to help eliminate health disparities in the diagnosis and treatment of lupus. To do this, a broad range of people from across disciplines created tools and materials that could be used by health care professionals in any field of medicine. Our mission? To enable providers to recognize the signs and symptoms of lupus, to understand treatment options, and to more fully see the person behind the patient. We have worked on this project for the past four years. So we’re extra-proud to see it getting attention!
The area we worked in most was creating tools that physicians can use with their patients: the “Lupus: What You Need to Know” video; “Ask Me Three,” an illustrated story on the importance of adhering to the doctor’s treatment plan; a Symptom Tracker; expert lectures in Spanish and other Spanish language resources; and a lecture on the use of a Personal Health Record. Along the way we previewed the mobile app, watched the videos, kept up with the monthly conference calls, and worked alongside some of the most caring physicians and educators you could ever meet. And, always, always, we kept in mind the people who would benefit in the end from all this knowledge: those living with lupus.
The educational curriculum includes lectures, case studies, and a video reference library. Real-life personal stories about what it’s really like to live with lupus are offered as well. All this and more is at the physicians’ fingertips, online and absolutely free!
To date, these materials have already been used at Meharry Medical College in Nashville, Northwestern University Feinberg School of Medicine in Chicago, and Emory University School of Medicine in Atlanta. Faculty from other schools have agreed to incorporate the materials into their medical school instruction, including University of Colorado at Denver, George Washington University in Washington, DC, Johns Hopkins University in Baltimore, and University of California at San Francisco Medical Center. And faculty members from at least 20 additional institutions have expressed interest in using the materials, including at Yale University, Columbia University, Stanford University, and Duke University.
Every day saved in a lupus diagnosis, every piece of information recalled about a better treatment, each time a doctor really listens to a new patient—that’s when we know our efforts are making a difference. You can make a difference, too: Encourage your physicians to check out the website, at thelupusinitiative.org. Ask them to start a dialogue about these lupus educational materials when they’re on Doximity, the professional networking tool used exclusively by physicians and other health care professionals. Now it is time to get the word out and ensure medical schools and physicians are using the curriculum. Let’s get these tools into the helping hands of our providers—and the sooner the better!
The Lupus Initiative is led by the American College of Rheumatology in partnership with the U.S. Department of Health and Human Services’ Office on Women’s Health and Office of Minority Health and the U.S. Surgeon General. The initiative was established in response to advocacy efforts led by the Lupus Foundation of America and other groups to increase medical professional knowledge about lupus. Since 2005, the Lupus Foundation of America has worked to increase funding for health professional education. These efforts led to the introduction of landmark legislation, called the Lupus REACH (Research, Education, Awareness, Communications and Healthcare) Amendments Act, to strengthen federal programs that identify the causes and cure for lupus, improve lupus data collection and epidemiology, and enhance public and health professional awareness and understanding of lupus. Many of the bill’s provisions subsequently were implemented through non-legislative advocacy efforts led by the Foundation.