DAY ONE: March 28, 2016

Transcription

1 Building Trustworthiness in PCORnet March 28-29, 2016 Washington D.C. [Venue TBD] Workshop Objectives: Describe the characteristics of trustworthy engagement Examine successes and failures in building trustworthiness in research initiatives Begin a robust dialogue around trustworthiness within PCORnet Create recommendations for PCORnet and its stakeholders Create recommendations for the networks and stakeholders that comprise PCORnet DAY ONE: March 28, :30-8:45 AM WELCOMING REMARKS Joe Selby, PCORI Executive Director Rachael Fleurence, PCORnet Director, PCORI 8:45 AM Charge to workshop speakers and participants Sharon Terry, PCORnet Engagement Committee Chair SESSION I: CURRENT LANDSCAPE Moderator: Kemp Battle, Scaling Trust Project, Genetic Alliance Council 9:00-9:30 AM Keynote: What constitutes trustworthiness? Ruha Benjamin, Princeton University (Invited) 9:30-9:45 AM Fabulous Failures: What can we learn? Jane Kaye, HeLEX - Centre for Health, Law and Emerging Technologies, University of Oxford, UK

2 Dianna Sue Uqualla, Havasupai Tribe (Invited) David Lacks, Lacks Family 9:45-10:15 AM Discussion with Presenters and Participants 10:15-10:45 AM BREAK SESSION II: ESSENTIAL ELEMENTS of TRUSTWORTHINESS Moderator: Jocelyn Samuels, Director of the HHS Office for Civil Rights (Invited) 10:45-11:00 AM Attributes of Trustworthiness Respect Casey Quinlan, Mighty Casey Media Privacy Jane Delgado, National Alliance for Hispanic Health (Invited) Transparency- Hugo Campos, Stanford Medicine X epatient Advisor 11:00-11:30 AM Discussion with Speakers and Participants SESSION III: Special Issues for Special Populations Moderator: Kristin Hayden, Ashoka Fellow (Invited) 11:30-11:55 AM Contextualizing Trust: Act locally Underserved communities: Neely Williams, Community Engagement Strategist, Mid-South CDRN Sexual and gender minorities: TBD Children: Jennie David, ImproveCareNow PPRN (Invited) 2

3 Decisionally compromised and Caregivers: Meryl Comer, Co-Principal Investigator, AD-PCPRN Mental health and other stigmatizing issues: Deborah C. Peel, Founder, Patient Privacy Rights 11:55-12:25 PM Discussion with Speakers and Participants 12:25-1:25 PM NETWORKING LUNCH SESSION IV: POLICY APPROACHES AND LEGAL FRAMEWORK Moderator: Kelly Edwards, University of Washington 1:25-2:00 PM Accelerators and Roadblocks in national policies and guidance OHRP Policies: Jerry Menikoff, Director, HHS Office for Human Research Protections IRB issues: Camille Nebeker, Assistant Professor, Family Medicine and Public Health School of Medicine, University of California, San Diego Information blocking: TBD PMI White House privacy guidance: TBD Community-Campus Partnerships for Health rewrite of Common Rule and Belmont Report: Al Richmond, Executive Director, Community-Campus Partnerships for Health 2:00-2:30 PM Discussion with Speakers and Participants 2:30-3:00 PM BREAK 3

4 SESSION V: BREAKOUTS 3:00-4:15 PM Being Trustworthy: Essential elements, barriers to overcome, resources to employ, resources needed, and next steps for deploying tools and solutions broadly Health systems: Vance Bauer, ADVANCE CDRN (Invited) Clinicians and Researchers: Bowen Chung, CPPRN Affinity communities social, ethnic, racial, disease: Donna Appell, Founder and CEO, Hermansky-Pudlak Syndrome Network The public: Stephen Thomas, Maryland Center for Health Equity, University of Maryland 4:15-5:00 PM Report back 5:00 PM Conclude 4

5 DAY TWO: March 29, :30-8:40 AM RECAP of DAY 1 and Opportunities for Day 2 Sharon Terry, Chair, PCORnet Engagement Committee SESSION VI: Building Trust Moderator: Bray Patrick Lake, PCORnet Coordinating Center 8:40-9:10 AM Case study for building trust: CPPRN Panelists: TBA 9:10-9:15 AM Discussants Academic Med Center Perspective: Peter Margolis, Principal Investigator, ImproveCareNow PPRN Foundation Perspective: John Walsh, Principal Investigator COPD PPRN 9:15-9:45 AM Discussion with Presenters and Participants 9:45-10:00 AM BREAK SESSION VII: Models of Trustworthiness Outside Health Moderator: Whitney Bowman-Zatzkin, Flip the Clinic 10:00-10:20 AM Models of Trustworthiness Outside of Health Education movement: TBD Community places to play: Darell Hammond, Founder & CEO, KaBOOM! (Invited) 5

6 Police and the Community: Tracie Keesee, UCLA Center for Policing Equity 10:20-11:10 AM Discussion with Speakers and Participants 11:10-11:50 AM Where to go from here? 11:50-12:45 PM Networking Lunch SESSION VIII: TRUSTWORTHINESS WITHIN PCORNET Moderator: TBD 12:45-1:05 PM Models of trustworthy engagement in communities (PPRN) (Best practice/models from PPRN networks) Holly Peay, Principal Investigator, DuchenneConnect Mitchell R. Lunn, Principal Investigator, PRIDEnet Emily Kontos, SAPCON (Phase I PPRN) Sami Kennedy, ImproveCareNow PPRN (Invited) 1:05-1:20 PM Models of trustworthy engagement in health systems (CDRN) (Best practices/models from CDRN networks) Katherine Bevans, PEDSnet Consuelo Wilkins, Director, Stakeholder Engagement, Mid- South CDRN and Executive Director, Meharry-Vanderbilt Alliance Rebekah Angove, Engagement Director, REACHnet 1:20-1:40 PM Lessons Learned in designing PCORnet demo projects Adaptable: Madelaine Faulkner, Program Director,Health eheart Alliance Obesity: Neely Williams, Community Engagement Strategist, Mid-South CDRN 1:40-2:10 PM Discussion with Speakers and Participants 6

7 2:10-2:30 PM Break SESSION IX: RECOMMENDATIONS for PCORnet 2:30-3:30 PM Breakouts considering topics that emerged and crafting draft recommendations for PCORnet 3:30-3:45 PM Break 3:45-4:30 PM Moderator: Sharon Terry, Principal Investigator, Community Engaged Network for All PPRN and Chair of the Engagement Committee REPORT OUTS Respondents Rachael Fleurence, PCORnet Director, PCORI Peter Margolis, Principal Investigator, ImproveCareNow PPRN and Chair of the PCORnet Council Adrian Hernandez, Co-Principal Investigator, PCORnet Coordinating Center and PCORnet Executive Committee Member Tom Carton, Prinicipal Investigator, REACHnet CDRN SESSION X: CONCLUSION 4:30-5:00 PM CONCLUDING REMARKS 5:00 PM ADJOURN 7