Patients with Disabilities as Teachers (P-DAT) Program

1. Patients with Disabilities as Teachers (P-DAT) Program Sweety Jain, MD Lehigh Valley Family Medicine Residency Program Allentown, PA Adapted from presentation at STFM Annual Conference, 2011, New Orleans

2. The P-DAT program • Established 3 years ago at the LVHFMR • Funded by Kenneth B. Schwartz Center • Initially a 1 hour program, now expanded to 3 hour sessions

3. Who is trained? • Medical Students rotating in Departments of Family Medicine, Pediatrics, Internal Medicine and OBGYN • Family Medicine residents through their initial ‘Foundations’ month or subsequently in the learning labs • Clinical staff (Nurses, Nurse Practitioners) • Faculty Physicians • Non clinical staff (Front desk receptionists, insurance coordinators, social workers, medical records personnel)

4. The Trainers • Patients with Disabilities • Parents of children with special needs • Family Medicine Faculty • Members from the local Advocacy groups

5. Why patients as trainers? • Experience of being taught by patients increases the confidence, decreases the anxiety and generates new insights (Wyurz and Kelly) • Parent to Parent of Vermont and University of Vermont College of Medicine collaborated and medical students partnered with families: the program received very positive evaluations

6. Format of the P-DAT Program • A 3 hour session • Held in a room that can accommodate 12-15 people and is accessible • Trainers are prepared initially through a ‘Train the Trainers’ sessions (3 hours X 2 sessions) • Pre and post training material, evaluation tools developed

7. P-DAT session structure and content Part I: • Completing the pre training questionnaires • Completing the media participation forms • Introductions and individual experiences with people with ID/DD • Presentations by parent and patient educators(with emphasis on their accomplishments and focus on their health care needs)

8. Part II: • The ‘Person First’ Language • Video ‘The Ten Commandments’ of Disability Etiquette • Interactive discussion related to the video and its application to the health care profession

9. Part III: Abilities versus Disabilities • You Tube videos, e.g. Chinese deaf dancers • Craft work ‘Quilling’, greeting cards made by the patient educator • Art work, sculpture, poetry and other creations by son (acquired brain injury) of the parent educator • Art work from Georgemendoza.com • Face book page

10. Introduction to the face book page of Medical Home Project1. You tube videos2. Ted Talks3. other resources related to disability and Medical Home concept

11. Evaluations • Pre training Questionnaire • Post training Questionnaire • Quality of training Survey • Narrative reflection

12. Pre and Post training Questionnaires • Knowledge based • A set of 6 questions, on both sides of the same sheet to maintain consistency in improvement of scores for each participant • Quality assessment survey has Likert style questions as well as qualitative items • Narratives written immediately after the session, 1 page or less in length

13. Initial data from a earlier year(1 hr sessions) • Likert style rating questions: a) Trainers, b) Video, c) Discussion • Total number 44 • Trainers average 4.85 • Video average 4.65 • Discussion average 4.73

14. Open ended questions: #1: • 89% students stated that they were uncomfortable interacting with patients with disabilities prior to the training. • Of these 73% indicated their primary concern was treating the disabled patient differently and insulting them

15. #2: Demonstrated a clear preference on learning etiquette by content focusing on practical tips (52%) and instructional delivery by a patient with a disability (39%) over other delivery methods.

16. #3: When asked what they would like to see changed about the training, the two most frequently cited suggestions were: • more time for discussion and patient/trainer interaction (30%), • Role playing healthcare interactions (16%).

17. #4: Effectiveness of the program: 98% responded the program was beneficial either by increasing overall awareness and sensitivity (52%) or increasing competency for future interactions with patients with special needs (46%)

18. Abilities Section

19. Chinese deaf dancers on you tube: An example of the abilities

22. RENZO’S ART STUDIO With Art Therapists: Charlotte Carey-Boothe Jody Matthews

23. Renzo grouting the guitar mosaic with Charlotte, Art Therapist

25. The Key to Love is Crooked

27. Quilling by Rebecca Dubin

28. Towers in heaven What color is the wind? Candles in the wind http://georgemendoza.com/painter/

29. Narratives by students

30. I found this session to be incredibly powerful-there are few times that I can remember being absolutely speechless, and this was one of them!

31. I realized the importance of education in helping people with disabilities and the true harm of ignorance

32. Often these seemingly common sense issues such as simple etiquette are lost in the hustle and bustle of an outpatient clinic practice and are confounded with our lack of expertise

33. I enjoyed the speakers; words of reflections from experiences of overcoming the challenges in peoples’ lives first hand is better than any lecture!

34. This was a very profound session, one in fact that often brought tears to my eyes. I will hold these stories in my heart as I progress through my medical training. Additionally, the Ten Commandments described are outstanding tools that should be kept on every medical students’ white coat or name tag

35. This was a great experience. With the stress of medical school-trying to memorize a billion facts and figures it is easy to forget why we decided to become physicians in the first place. Listening to everyone share their stories really helped me to remember why and to feel excited about the impact I will have on patients and their families. Thank you so much!

36. Acknowledgements • Department of Family Medicine, Lehigh Valley Health Network • Kenneth B. Schwartz Center • MHP team members • Research Team at LVHN-Nyann Biery, Susan Hansen • Sue Turi, Administrative support to P-DAT • Parent and Patient Partners, P-DAT - Cheryl Dougan,Lori deturck,Rebecca Dubin, Fran Salerno