Awareness Campaign Becomes a Program

IPPF Awareness Program Manager Kate Frantz with Marcy Syms and Mindy Unger at the Greater New York Dental Meeting

It started with a vision to make more people aware of pemphigus and pemphigoid (P/P). Those following the IPPF Awareness Campaign may know it was designed as a three-year initiative with January 2017 as a tentative end date. Well, January has come and gone, and the Awareness Campaign—or should I say, Program—is here to stay. While “campaign” implies a temporary project, “program” suggests a permanent solution to a problem. We have made significant progress in the dental community, and it is clear our services are still needed to promote education and awareness of P/P. We will continue our efforts to reduce patient diagnostic delays by presenting to dental students and practitioners, exhibiting at conferences, publishing articles, and much more.

Let me take you on a journey over the past three years, highlighting the Awareness Program’s achievements in “putting P/P on the radar” of dental professionals.

Patient Educator Presentations at Dental Schools
P/P patients share their emotional diagnosis journeys with dental students across the country. To date, Patient Educators have provided 38 presentations at 15 dental schools reaching approximately 4,000 students and faculty. Check out our Patient Educators in action by watching this video:

In-Person Continuing Education (CE)
Both patient and scientific speakers present continuing education courses on P/P to dental practitioners. Speakers often present together, providing a unique experience where the audience hears scientific information along with the patient story. The IPPF has presented 10 CE courses, reaching over 600 dental professionals.

Dental Conference Exhibits
The IPPF rents exhibit space at dental conferences across the United States. Staff and volunteers share their diagnosis stories, distribute educational materials, and answer questions about P/P and the IPPF. Since November 2015, we have exhibited at 10 dental conferences, reaching over 5,600 dental professionals.

Publication of Articles in Dental Magazines, Journals and Websites
The IPPF seeks opportunities to publish articles on P/P to increase our messages’ reach. Thirty dental societies in eight states have accepted an IPPF article on P/P for publication in their various newsletters and social media outlets. Most notably, the IPPF and Indiana University School of Dentistry’s manuscript entitled “The Patient Educator Presentation in Dental Education: Reinforcing the Importance of Learning About Rare Conditions” was published in the Journal of Dental Education in May 2016.

Online and Print Educational Resources (Website, Videos, Brochures, etc.)
We have a resource page, videos, and materials available for print. Make sure to tell your dentist to visit our site!

News Updates
Generating fresh online content makes it easier for patients and physicians to find us. One way we do this is through PemPress, the IPPF news site. PemPress dedicates an entire section to the Awareness Program.

E-Blasts to Dental Community
The IPPF remains in contact with dental students and professionals by sending periodic emails to the dental community. Whether to inform them of our participation at an upcoming exhibit, thank them for stopping by our booth, or sending general resources, this serves as an additional communication method.

Patients, friends, and family have generously contributed their time to the Program by exhibiting at dental conferences, presenting to dental societies and schools, and sharing information with their local dentists. Are you interested in getting involved? Email to learn more or suggest your ideas.

Evaluation/Data Collection
The Awareness Program is all about data! We conduct surveys with students after each Patient Educator presentation. Over 90 percent of students report the Patient Educator presentation will change their future clinical decision-making and help them to remember important information about P/P. Here are a few quotes from students:

“Thank you so much for sharing your private experience with us. This was the most valuable and probably the one thing I will retain from this class.”

“I really enjoyed this presentation and I strongly believe that it should be given to as many dental students as possible.”

“The presenter was excellent! Her presentation really is helping me to remember much more about pemphigus, compared to what I would remember based on our dental school lectures alone.”

We also survey dental professionals while exhibiting at conferences. Preliminary results reveal that 40 percent of dentists and 50 percent of dental hygienists report low confidence levels in their ability to recognize the clinical presentation of P/P. Clearly, we are still needed!

The Awareness Program could not do what we do without the generous financial support of the Sy Syms Foundation and the Unger Family. Thank you!

We also extend our gratitude to the IPPF Awareness Program Committee, Dental Advisory Council and Content & Curriculum Committee for their review, feedback, and support.

This quarter, donations made to the IPPF will specifically support the Awareness Program.