Welcome! NCDHR Retreat 2013 HL2 LPAB

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1 Welcome! NCDHR Retreat 2013

2 NCDHR Mission: To promote health and prevent disease in deaf and hard-of-hearing populations through community-based participatory research. Principal Investigator/Program Director: Dr. Thomas A. Pearson ( TAP ) Associate Director: Dr. Steven Barnett

3 DHCC Mission: DHCC is a partnership between Deaf Communities, researchers, and health providers to promote an understanding of the health needs of culturally Deaf people (ASL users), to identify issues essential to creating parity between the Deaf and general population, across the nation. DHCC Chair: Valerie Nelson-Metlay

4 HL2 Mission: To study the relationship between hearing loss and health by partnering with the community of people with hearing loss, clinicians, and researchers. HL2 Co-Chairs: Mary Chizuk & Don Bataille

5 LPAB Purpose: To build and expand community capacity to support the NCDHR s mission. LPAB Facilitator: Dr. Jim DeCaro

6 Other Partners & Staff NTID & RSD National External Advisory Committee Deaf Health Pathway Monroe County Department of Public Health RRCD Community Partner Staff (20) Deaf Actors (40)

7 Accomplishments ( )

8 Infrastructure Accomplishments Activities Personnel Faculty & Staff Additional Deaf/HoH Faculty & Staff Deaf/HoH Community Partners Deaf/HoH Community Partners Interpreter (2008) Interpreter Space Offsite offices Saunders Research Building Suite Prevention Research Center (CDC) Interpreting/Access Services Funding Prevention Research Center (CDC) Special Interest Projects (1) Special Interest Projects (1) 4 K Awards (NHLBI, AHRQ, NIDCD) Administration Policy Interpreting/Access Services (2008) Dept. of Community and Preventive Medicine 2 R01 Awards (CDC, NIDCD) Community Transformation Grant (CDC) Clinical and Translational Science Institute (CTSI) National Task Force on Training Deaf Health Professionals

9 Research Accomplishments Activities Overall Research Agenda Assess Deaf Health Intervention to Improve Health Deaf Weight Wise Core Research Project Other Research Projects Deaf Health Survey 2008 ASL video questionnaire - Desktop BRFSS survey RAP Communicating Research Culture ASL Video Questionnaire - Laptop Baseline questionnaires Blood Pressure / weight Blood glucose and lipids Group intervention Follow-up questionnaires Intimate Partner Violence (DWC) Suicide & Social Networks Informed Consent

10 Community Partnership Accomplishments Activities Community Representation Deaf Health Community Committee (DHCC) Recruitment DHCC Local Partner Advisory Board Healthy Living with Hearing Loss (HL2) Recruitment / Retention Community Participation Decision Making Representation in Community Translation Working Group ASL Videos Results Interpretation Reapplication Planning DHCC representation on Executive Committee Translation Working Group ASL Videos Results Interpretation Reapplication Planning DHCC & HL2 representation on Executive Committee Community Advisory Council of the U of R Medical Center HEART leadership team

11 Communication & Dissemination Accomplishments Activities Focus groups Focus groups Continue Working with Deaf / Hearing Loss Communities Social Media Presentations Publications Town hall meetings / Retreat DHCC membership on Executive Committee Website Newsletter Vlogs National meetings Journal Articles Town Hall meetings / Annual retreats DHCC & HL2 on Executive Committee Facebook / website / twitter Newsletter Vlogs National meetings Deaf Health Talks Journal Articles ASL Article Translations

12 Education & Training Accomplishments Activities Community Education Town Hall Meetings / Retreat Deaf Health Talks Annual Retreats / Town Hall Meetings Deaf Strong Hospital Research Training U of R Freshman Medical Students Summer Interns Medical Student Projects (CHIC, Deaf Health Pathway) Postdoctoral Fellows U of R Freshman Medical Students St. John Fisher School of Pharmacy Summer Interns Medical Student Projects (CHIC, Deaf Health Pathway) Postdoctoral Fellows Training Support Deaf Faculty Career Development Awards (4) NIH applications for Undergraduate, Graduate and Faculty support with NTID / Gallaudet

13 NCDHR Retreat Facilitators Drs. Jim DeCaro & Scot Atkins Discussions: 1. How are we doing? 2. What should the next step be? 3. Who else should be involved? 4. Summary

14 Group Discussion 1 of 4 How are we doing?

15 Group Discussion 2 of 4 What should the next step be?

16 Group Discussion 3 of 4 Who else should be involved?

17 Group Discussion 4 of 4 Summary

18 FOA Timeline Retreat 2013 #1 : Feedback on NCDHR Town Hall Meetings: Get community input Retreat 2013 #2: Review the application

19 Who are the Stakeholders? Community Partners University of Rochester (NCDHR) Funder (CDC)

20 Town Hall Meetings At Deaf Club At Corporate Woods At RSD

21 Centers for Disease Control and Prevention

22

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