Where the Patient is the Educator
We’re leading the way in interprofessional education (IPE) to improve the coordination of care among healthcare providers. Our patient-centered approach is working toward a future where families no longer have to face the loss of a loved one to these rare diseases.
What is IPE forum?
According to the World Health Organization (WHO), interprofessional education (IPE) is an experience that “occurs when students from two or more professions learn about, from, and with each other” (WHO, 2010). The goal of IPE is to improve health outcomes and enable effective collaboration. IPE’s have become considered best practice in academic institutions across the country.
An IPE Model to Optimize Scleroderma Patient-Provider Discussion
The goal of the Steffens Scleroderma & Degos Disease Foundation’s Interprofessional Events (IPE) is to educate emerging health care professionals and increase their involvement in studying Scleroderma.
Each year, hundreds of graduate-level health sciences students benefit from attending an IPE forum focused on scleroderma. Our patient-centric IPEs are unique in that they include patient participation at the forefront, as well as students from a wide array of medical professions.
With patients as the educators, our IPE is made possible by a partnership among the Steffens Scleroderma Foundation, and several academic institutions, it is believed to be the first scleroderma educational experience of its kind and has become a model for provider education. Initially held in person in Albany, NY, the forum has since expanded to include nationwide participants via Zoom. Our IPE will continue to evolve as we partner with more academic institutions.
Scleroderma Patient as The Educator
Since scleroderma is a rare disease with variable symptoms that can potentially impact several dissimilar parts of the body including skin, lungs, vascular, gastrointestinal, kidney, and heart, it is difficult to diagnose and treat. The Steffens Scleroderma Foundation strives to combat this by introducing health care professionals to the disease and giving them an opportunity to dialogue with actual patients about their experiences.
By utilizing this unique collaborative approach, with patients as educators, the foundation strives to reduce the time to diagnosis and improve the quality of care for scleroderma patients. The hope is that patients will never again be greeted with a blank stare when mentioning their diagnosis to a healthcare professional.
About our Scleroderma Focus IPE
Whether held in person—or online, each Steffens Foundation IPE includes about 200 students from multiple health-care professions including OT, PT, Nutrition, Nursing, Public Health, Pharmacy, Medicine, Psychology, Dermatology.
Approximately 30 patients with scleroderma also participate. Past patient participants were diverse and widespread, including those from throughout New York State (the Capital Region, the North Country, NYC/Metropolitan Area, Western NY) as well as patients from multiple states including Massachusetts, Vermont, Ohio, Hawaii, and Florida.
At the IPE, each patient is assigned to a team of health-professional students from multi-disciplines. The students and patients actively engage in an open dialogue to help the medical students gain a deeper understanding of patient needs. This form of open exchange also ascertains how previously unconsidered disciplines have a place in the widening understanding of the treatment of scleroderma.
This event, includes additional elements including a patient-keynote speaker and an expert panel to answer questions.
Our Success
Now in its 9th year, the Steffens Focus on Scleroderma IPE has provided over 1,000 emerging health care professionals with an increased awareness of scleroderma and its need for specialized treatment. The feedback received from both students and patients has been overwhelmingly positive. Students love the opportunity to have direct access to patients who have been diagnosed with this rare disease, and patients appreciate the chance to tell their stories to those who may be able to make a difference in their journey until there is a cure.
There are about 45 Scleroderma Centers in the United States and there is interest in providing the Steffens IPE, with patient participant as educator, as a “best practice" model that might be replicated at other centers. There have been inquiries in New York State as well as 4 other states and possibly Canada, to explore duplication of our IPE design in their area.
Watch this IPE Informational Video to learn more about our Scleroderma IPE forum
If you would like to be involved in our next IPE event, please reach out with the links below.
We sincerely appreciate your interest and past participation in our educational events. Thank you for your continued support in sharing your experiences with future healthcare professionals.
Patient
If you are a patient or someone affected by scleroderma or Degos disease and would like to be involved in our next IPE event.
Clinician
If you are a healthcare professional and would like to be involved in our next IPE event.
Student
If you are a student and would like to be involved in our next IPE event.
Academia
If you are a academic institution or professor and would like to be involved in our next IPE event.