Workshop: Privacy, Trust, and Consent in Aging Research and Recruitment

Day 1: Foundations of Privacy, Trust, and Consent in Aging Research

11:30 – 11:45 a.m. | Welcome and Opening Remarks

Speaker:

• Bradley White, Ph.D. (National Institute on Aging)

11:45 a.m. – 1:00 p.m. | Session 1: Privacy and Data Protection in Aging Research

Chair/Moderator: Michelle Meyer, Ph.D., J.D. (Geisinger)

Speakers:

• I. Glenn Cohen, J.D. (Harvard Law School)
• Sharona Hoffman, J.D., LL.M., S.J.D. (Case Western Reserve University)
• Brad Malin, Ph.D. (Vanderbilt University Medical Center)
• Megan Doerr, MS, LGC (Sage Bionetworks)

Discussion themes:

• Privacy-preserving data collection, storage, and sharing in aging research
• AI, data governance, and regulatory compliance
• Security safeguards and breach response for sensitive participant data

1:00 – 1:15 p.m. | Break

1:15 – 2:30 p.m. | Session 2: Building Trust through Informed Consent with Varied Cognitive Abilities

Chair/Moderator: Jessica Langbaum, Ph.D. (Banner Alzheimer's Institute)

Speakers:

• Erin DeMartino, M.D. (Mayo Clinic Rochester)
• Emily A. Largent, J.D., Ph.D., R.N. (University of Pennsylvania)
• Kristin Kostick-Quenet, Ph.D. (Baylor College of Medicine)

Discussion themes:

• Ethical and practical challenges in informed consent for individuals with cognitive impairment
• Tools and strategies to support understanding, transparency, and ongoing consent
• Caregiver involvement and trust-building across diverse older adult populations

2:30 – 2:45 p.m. | Break

2:45 – 4:00 p.m. | Session 3: Community-Based and Decentralized Recruitment Strategies

Chair/Moderator: Susan Enguídanos, Ph.D., M.P.H. (University of Southern California Leonard Davis School of Gerontology)

Speakers:

• Kunpeng Zhang, Ph.D. (University of Maryland)
• Peter Hauser, Ph.D. (Rochester Institute of Technology)
• Sheryl Zimmerman, Ph.D. (University of North Carolina at Chapel Hill)
• Cheryl R. Dennison Himmelfarb, Ph.D., R.N. (Johns Hopkins University)

Discussion themes:

• Decentralized recruitment models and the role of technology
• Digital outreach and modern participant engagement strategies
• Community partnerships, cultural responsiveness, and inclusion

Day 2: Innovations and Applications in Recruitment

11:30 – 11:45 a.m. | Day 2 Welcome and Recap

Speaker:

• Joe Chiarenzelli, M.P.H. (National Institute on Aging)

11:45 a.m. – 1:00 p.m. | Session 4: Cost Drivers, Sustainability, and Future Directions

Chair/Moderator: Alexandra Mitchell (National Institute on Aging)

Speakers:

• Kenneth Getz, M.B.A. (Tufts Center for the Study of Drug Development)
• Paul Wicks, Ph.D. (Wicks Digital Health)
• Rachel Anne Whitmer, Ph.D. (University of California, Davis)

Discussion themes:

• Cost drivers and opportunities to improve recruitment efficiency
• Broadening participation while maintaining participant safety and trial integrity
• Sustainability of recruitment platforms, partnerships, and long-term infrastructure

1:00 – 1:15 p.m. | Break

1:15 – 2:30 p.m. | Session 5: Partnerships, Recruitment Pathways, and Infrastructure for Research Participation

Chair/Moderator: Rachel Richesson, Ph.D., M.P.H. (University of Michigan Medical School)

Speakers:

• Corinne Pettigrew, Ph.D. (Johns Hopkins University)
• James McNally, Ph.D. (National Institute on Aging)
• Stephanie Morain, Ph.D., M.P.H. (Johns Hopkins University)

Discussion themes:

• Community and health system partnerships that support recruitment
• Recruitment pathways through cohorts, clinics, registries, and outreach
• Ethical, regulatory, and operational infrastructure for sustainable participation

2:30 – 2:45 p.m. | Break

2:45 – 3:50 p.m. | Session 6: Technology-Enabled Recruitment and Consent

Chair/Moderator: Kelly McKee (Science37)

Speakers:

• Zhiyong Lu, Ph.D., FACMI, FIAHSI (National Library of Medicine)
• James Giordano, Ph.D., D.Phil. (Georgetown University Medical Center)
• Paul Harris, Ph.D., FACMI (Vanderbilt University)

Discussion themes:

• AI-enabled trial matching and responsible use of participant data
• Recruitment platforms and digital tools for older adult participation
• E-consent, EHR integration, and equitable access to technology-enabled research

3:50 – 4:00 p.m. | Closing Remarks

• Erin Harrell, Ph.D. (National Institute on Aging)