The Importance of Being AuthenticUtilizing Persons with Disabilities as Standardized Patients

UMDNJ - New Jersey Medical SchoolKenneth Robey, Ph.D.

University of South Carolina Catherine Leigh Graham, MEBME

State University of New York, BuffaloAndrew Symons, M.D., M.S

THE ALLIANCE FOR DISABILITY IN HEALTH CARE EDUCATION

University of South Florida Laurie Woodard, M.D.

Tufts UniversityPaula Minihan, Ph.D., M.P.H.

University of Massachusetts, Tufts University Linda M. Long-Bellil, Ph.D., J.D.

Persons with Disabilities (PWD) as Standardized Patients (SP)

• SP Purpose:– to teach or assess clinical skills or assess while encouraging

perspective taking and reflection

• SP model: suited for teaching about PWD– control clinical scenario– create teachable moments– promote self assessment/reflection – appreciate PWD expertise re living with disability

• PWD as SP Results: Most programs have found that PWD are very effective teachers

PWD as SP A very effective way to teach students/residents about

PWD• Actors feigning disability are not credible faking: – Atrophied muscles– Deafness– Blindness– Contractures– Spasticity– Ptyalism/drooling– Poor head control

– Dysarthric/slurred speech

– Devices used for communication

– Communication patterns often used by a person with an intellectual disability

USF – Education/SP Experiences

• Disability module integrated into required 3rd year primary care clerkship, can be modified for Residents– PWD incorporated into module in various ways:

• Home visits, panel discussion, service learning projects, as SPs

• PWD as SP used in 2 separate experiences– Model Patients – Educational session

• Hands-on session in a simulated exam room that promotes reflection– OSCE – Evaluative session

• One of several OSCE experiences providing formative feedback during clerkship

Prior to the OSCE

• Students watch a vignette from the movie “Rolling” – A pt with SCI goes to ortho for shoulder pain and

tx is suboptimal. – After vignette, group discusses how physicians

could help the doctor in the movie be a more effective clinician.

USF - Model Patient Experience

• Students/Residents interview & briefly examine PWD in simulated clinical exam room

• PWD/caregiver briefed on program goals, then tell their stories, guide students in appropriate etiquette

• Each student/resident sees 4 patients• Pt & Medical faculty observe: live video/one way mirrors• Concludes with learning circle & written reflection • PWD are recruited from USF medical practice & by other

PWD

USF –OSCE• Based on shoulder case developed by Tufts Medical

School:– PWD is a manual chair user who presents with a painful

shoulder• Shoulder pain symptoms worsening over past few weeks• Earlier episode had resolved with rest & PT• Overuse from occupation, care-taking responsibilities,

disability-related use• Refusal to return to previous doctor because she seemed

uncomfortable with patient’s disability• Social supports essential to treatment plan• Patient fears eventual loss of function and independence if

problem becomes chronic

OSCE

• SPEs with ASD & parent play out scenario as close to real life as they want/can handle (no script)

• Student/Resident interviews and examines PWD• Evaluated on medical + functional history, PE adapted for

PWD, patient centered plan• SP and faculty observer give immediate feedback, using

check list – formative evaluation

USF - Students Examining Patients during Model Patient Session

USF - Primary Care Clerkship“Patients with Disabilities” Module

Common Themes

• Teaching students/residents how to communicate appropriately and effectively

• Providing students/residents with an opportunity to interact with and become more comfortable with PWD

• Debunking common notions about PWD– Inability to speak for themselves– Poor quality of life– Poor health inevitable

Benefits• Authenticity: Actors without disabilities…– Cannot mimic– May reinforce negative stereotypes especially off script

• Recognition of patient expertise about own condition– Rich lives, jobs, families, responsibilities, future plans

• Understanding disability ≠ poor health– Concepts of thinner margin of health, secondary conditions

• Provides special teachable moments – Communication devices, transferring patients to exam tables,

talking with caregivers present

Challenges

• Evaluation can be tricky– Consistency - script vs. telling own story– Lack of consensus regarding competencies that are observable– SPs who evaluate must be trained

• Attendance of PWD– Recruitment of people with requisite skills may already have full

time employment– Stamina– Fluctuating health status– Transportation difficulties