PHT 207: PCORI Medical Provider Module: Disseminating Patient-Centered Outcomes Research Results about Disabilities to Black and Hispanic Parents

Welcome to this learning module on disseminating patient-centered outcomes research results about disabilities to Black and Hispanic parents.

Note: This learning module was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The views, statements, and opinions presented in this module are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. 

The National Society of Genetic Counselors (NSGC) has authorized Human Development Institute  to offer up to 0.2 CEUs or 2 Category 1 contact hours for the activity PHT 207: PCORI Medical Provider Module: Disseminating Patient-Centered Outcomes Research Results about Disabilities to Black and Hispanic Parents. The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of genetic counselor recertification.

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Course Content

Acknowledgments and Background
Introduction
Course Objectives
Top Patient Centered Outcomes Research (PCOR) Questions Valued by Black and Hispanic Parents of Children with Down Syndrome
1 Quiz
Knowledge Check: Top PCORI Research Questions
Recommendations for Medical Professionals
8 Topics
6 Quizzes
Recommendation 1: Provide clinical training on how to sensitively deliver a diagnosis and avoid racial/disability bias.
Reflection Activity: Recommendation 1
Recommendation 2: Communicate with sensitivity, discuss prenatal testing and reproductive options, and provide balanced information about Down syndrome
Reflection Activity: Recommendation 2
Recommendation 3: Make referrals, coordinate care, and offer different clinic models to address the informational and support needs of new and expectant parents
Reflection Activity: Recommendation 3
Recommendation 4: Provide patient resources/education at the moment of diagnosis.
Reflection Activity: Recommendation 4
Recommendation 5: Make connections to local and national parent support organizations
Reflection Activity: Recommendation 5
Recommendation 6: Make racial and ethnic representation a priority
Recommendation 7: Follow up with patients after the diagnosis
Reflection Activity: Recommendation 7
Recommendation 8: Advocate for equity
References & Resources:
Course Evaluation: