Guide to Selecting a Healthcare Provider Maren Davis Tina Huynh Stella Restrepo

1. Guide to Selecting a Healthcare Provider Maren Davis Tina Huynh Stella Restrepo Parent Representative: Jennifer Banna Faculty Mentor: Judith Holt, PhD Medical Home Portal Representative: Mindy Tueller

2. Introduction • Medical Home Portal • Web-based resource intended to provide valuable and relevant information about CSHCN to their families and healthcare teams who care for them • Overview of leadership project • Creation of a Guide to Selecting a Healthcare Provider • Based on the Medical Home Model • Consists of questions, includes descriptions of healthcare providers • Targeted domains are primary care, OT, PT, SLP and insurance providers • Based on research, in addition to feedback from families with CSHCN and healthcare professionals in these related fields • Goal is to provide valuable, reliable and robust information

3. Rationale • Diagnosis is a confusing time for families. • Guide intended for all stages of caring for a child with special health care needs. • Easy to locate on the Medical Home Portal. • Personalizable. • Definitions of each provider, Primary Care, OT, PT and SLP. • Flexible for use in different communities or provider settings. • Intended to increase the awareness of the tenants of the Medical Home Model. • First step in creating effective partnerships for families and providers. • Includes questions related to insurance.

4. Procedures Methods and Measures - Researched providers and relevant information to develop survey questions - Pilot Survey (15 families) - Refined questionnaire - Provider Surveys (5+ for each specialty) - Family Survey (15 additional families) Survey Participants - Families with children with special health needs - OT, SLP, PT, and Primary Care Providers Data Analysis - Quantitative and Qualitative analysis by members of the group.

5. Results • Completed surveys: • 30 families (from Colorado, Idaho, Iowa, Montana, Utah, West Virginia, Wisconsin, Wyoming) “...I wish I would have thought of that question to ask my physician/provider…” • Providers: • 9 OT • 10 PT • 7 SLP • 7 PCP “ Confusing answering questions about questions!” Responses from 30 families

6. Results • 4= Very valuable • 3= Somewhat valuable • 2= Not very valuable 1= Not at all valuable

7. Results • 4= Very valuable • 3= Somewhat valuable • 2= Not very valuable 1= Not at all valuable

8. Project Summary • Challenges: - Defining the project - Representing diverse needs of families with questions - Time constraints - Nature of survey: - asking questions about questions! - length - Disseminating the survey to get accurate representation - Interpreting survey results • Future Directions: - Translate survey into Spanish to reach more populations - Upload question bank to Portal website - Videos for the webpage showing the questions being asked to the providers

9. Special Acknowledgments Medical Home Portal Team Mindy Tueller Gina Pola-Money URLEND Faculty and Trainees Judith Holt Bethany Rigles Trainee’s core mentors Survey participants

10. Questions?

11. Suggestions- Maren • Site-based Discussions - During/after lectures, allow some time for more small-group discussion of the topic and then regroup to further discuss as large group - Giving more people an opportunity to share ideas and contribute • Question/Answer Panels with Families/Individuals - After a specific topic (ie: genetics, advocacy, agencies, etc.) open up for trainees to ask a panel of family representatives with experience in that area to understand what they can do within their specialty area - Helps trainees understand how a topic relates to their field/application/ encourages proactive involvement with families

12. Suggestions- Tina • Personal reflections on clinical visits for URLEND trainees • Can be implemented as a monthly, required assignment • Allows trainees to develop as leaders, expanding their CSHCN understanding beyond their discipline • Group discussion on key assignments, such as the family mentorship experience • Can be implemented by allowing time for trainees during the last 15 minutes of seminar after an assignment is due • Allows trainees to learn from one another and expand their perspective • Creation of a forum for URLEND trainees and faculty • Can be implemented through an online media • Allows individuals to connect and efficiently share information

13. Suggestions- Jenn • Journal entries for Parent Trainees rather than assignments. • Implemented as a weekly or monthly turned into the core faculty.Varied topics to facilitate growth in different areas of leadership skills. • Decrease intimidation and give opportunity for individualized growth. • Opportunity for further discussion of certain topics at our locations. • This could be done by taking breaks from the large scale discussions. • Increase awareness of community resources and the individuals at our sites. • Additional topics of caring for children who are undiagnosed or who have rare disorders. • This could be done by adding additional information. • Increases leadership by increasing information for all trainees.

14. Suggestions- Stella • URLEND trainees participation in South Main Clinic projects • Increases cultural awareness through participation in longer projects. • Implement discussion time among URLEND trainees and faculty in each site.