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Engage UC

Engaging University of California Stakeholders for Biorepository Research

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Engage UC

  1. 1. EngageUC: Engaging University of CaliforniaStakeholders for Biorepository Research
  2. 2. EngageUC Engaging University of California Stakeholders for Biorespository ResearchElizabeth BoydDaniel DohanSarah DrySeptember 14, 2012
  3. 3. ORGANIZATIONEfficient, Ethical, and Sustainable Systemfor Obtaining Biospecimens and Data 3
  4. 4. ORGANIZATIONOrganization 4
  5. 5. ACTIVITIESStakeholders 5
  6. 6. ACTIVITIESRCT to Determine Consent Method 6
  7. 7. ACTIVITIESEngageUC: Project Activities Aim 1: Stakeholder Aim 2: RCT of Informed Aim 3: Policy Engagement Consent Translation (Months: 1-9) (Months: 10-30) (Months 30-36)• Convene institutional • Select biospecimen • Convene IO’s, officers to review/update research projects to include Researchers, and policies on human subjects in informed consent RCT CAB to review RCT in biospecimen research • Randomize potential results• Convene biospecimen biospecimen participants to • Based on Aim 2 researchers to propose receive 1 of 3 options: results, develop harmonized procedures standard consent, Portable harmonized policies• Create community advisory Legal Consent, or for outpatient board (CAB) via Community Informed biospecimen Deliberative Democracy Systemwide Consent research• Convene Officers, (CISC; Aim 1)* • Devise plan to Researchers and CAB to • Compare consent quality, implement review biospecimen policies trust in research, reasons harmonized policies and procedures for accepting or declining, • Establish system to• Develop Community and enrollment rate evaluate and Informed Systemwide • Examine clinician/staff improve UC Consent (CISC) for preferences using biospecimen biospecimen research to be qualitative interview research processes evaluated via randomized that includes a trial permanent CAB 7
  8. 8. ACTIVITIESEngageUC: Timeline & Milestones 8