Patients as Partners in Clinical Research

Other · Grand Ballroom

Registration

Other · Grand Ballroom

Co-Chairs’ Welcome & Opening Remarks

Angela Bilkhu, Roche · Rucha Shah, ECOG-ACRIN Cancer Research Group

Fireside chat · Grand Ballroom

Caregiver Keynote: Resilience and Hope - How a Clinical Trial Changed Garrett’s Life with ASMD

Justin Hopkin, University of Rochester / National Niemann-Pick Disease Foundation · Adrelia Allen, Merck Research Laboratories

Fireside chat · Grand Ballroom

Keynote Fireside Chat: Embedding Patient Advocacy into Corporate DNA - Pathways to Lasting Impact

Jayne Gershkowitz, Amicus Therapeutics · Sabina Kineen, Lived-experience Expert

Panel · Grand Ballroom

Patient and Caregiver Perspectives: Insights for Optimizing Clinical Trials

Christine McLennan, BioNTech US · Catherine Ames, Fierce Hope Patient Advocacy · O'Ronica Fields, Advocate & Community Ambassador · Jon Nelson, Pulverize The Stigma · Sharon Rivera-Sanchez, Trials of Color & Saving Pennies 4 A Cure

Break

Grand Opening of the Patients as Partners Exhibits, Networking and Breakfast

Keynote · Grand Ballroom

Keynote: Clinical Trials FOR the Community, WITH the Community

Ifeyinwa (Ify) Osunkwo, Novo Nordisk Rare Disease

Workshop · Grand Ballroom

Interactive Session: Empathy in Action - Designing Solutions Across Healthcare Pathways by Deeply Understanding the Patient Experience

Wendy Erler, AstraZeneca, Alexion Rare Disease · Sabina Kineen, Lived-experience Expert · Gauri Narayan, Alexion Pharmaceuticals · Rohita Sharma, Alexion Pharmaceuticals

Break · Grand Ballroom

5-Minute Health Break

Workshop · Grand Ballroom

Reducing Patient Burden: An Interactive “Pop-Up” Session

Niambi Blodgett, Areti Health · Kelly J Brassil, Pack Health, A Quest Diagnostics Company · Amber Hill, Research Grid · Brian Lee, Thriveable · Madeleine Pagel, myTomorrows · Rick Scorzetti, Jumo Health · Su Smith, Origins

Break

Luncheon, Networking and Optional Roundtable Discussions

Roundtable · Grand Ballroom

AI in Patient Engagement: Where Does it Fit in and How Can it Add Value?

Beth Brooks, Sanofi

Roundtable · Constitution Ballroom AB

Establishing and Implementing SOGIIS Data Collection for Inclusive Clinical Research

Amanda Beasley, Amgen · Jessica Brescher, BMS

Roundtable · Back Bay Ballroom AB

Enhancing Health Literacy and Addressing Language Challenges in Clinical Trials

Maureen Kashuba, Merck

Roundtable · Back Bay Ballroom CD

Redefining Advocacy Group Collaborations: Meeting Today’s Clinical Trial Demands

Beth Moody, AbbVie

Roundtable · Independence West

Early-Phase Patient Engagement Strategies for Biotech and Medical Device Development

Jonah Golder, Medical Device Innovation Consortium (MDIC)

Talk · Track 1: Pharma & Advocacy Collaborations / Early Patient Engagement · Grand Ballroom

Agios: Integrating Patient Perspectives in the RISE UP Trial: A Model for Collaborative Trial Design

Holly John, Agios Pharmaceuticals · Catherine Ames, Fierce Hope Patient Advocacy

Talk · Track 2: Representation in Clinical Trials / Community Engagement · Back Bay Ballroom AB

Biogen: Achieving Health Equity through Authentic Patient Engagement from First Interaction

Katie King, Biogen · Barry Nelson, Advocate

Talk · Track 3: Operationalizing / Scaling Patient Engagement · Back Bay Ballroom CD

Lundbeck on How They Embed Patient Perspectives into Clinical Trial Infrastructure

Melissa Herman, Lundbeck · Maggie McGuire-Kuhl, The Michael J Fox Foundation (MJFF)

Talk · Track 1: Pharma & Advocacy Collaborations / Early Patient Engagement · Grand Ballroom

Day One Bio: Accelerating Pediatric Cancer Research with a Multistakeholder Collaboration Framework

Christa Kerkorian, Day One Biopharmaceuticals · Catherine Ames, Fierce Hope Patient Advocacy

Talk · Track 3: Operationalizing / Scaling Patient Engagement · Back Bay Ballroom CD

J&J: Creating a Patient-Centric Operating Model to Drive Accountability and Transform Clinical Development

April Lewis, J&J Innovative Medicine · Gonzalo Linares, J&J Innovative Medicine · Maggie McGuire-Kuhl, The Michael J Fox Foundation (MJFF)

Talk · Track 1: Pharma & Advocacy Collaborations / Early Patient Engagement · Grand Ballroom

Edwards Lifesciences: Prioritizing Patient Preferences to Influence Product Design and Regulatory Outcomes

Alissa Hanna, Edwards Lifesciences · Rhoyge Traylor, Edwards Lifesciences · Catherine Ames, Fierce Hope Patient Advocacy

Talk · Track 2: Representation in Clinical Trials / Community Engagement · Back Bay Ballroom AB

Endo: Strengthening Site Partnerships to Improve Operational Efficiency and Enhance Patient Care

Rosalie Filling, Endo · Barry Nelson, Advocate

Talk · Track 3: Operationalizing / Scaling Patient Engagement · Back Bay Ballroom CD

Pfizer: Ensuring Continuity in Patient Insights to Strengthen Product Development

Stephanie Christopher, Pfizer · Maggie McGuire-Kuhl, The Michael J Fox Foundation (MJFF)

Talk · Track 1: Pharma & Advocacy Collaborations / Early Patient Engagement · Grand Ballroom

J&J: Patient Partnerships that Enhance Recruitment, Retention, and Speed in Rare Disease Trials

Maartje Mangelaars, J&J Innovative Medicine · Tasha Meredith, Advocate · Lisa Shea, J&J Innovative Medicine · Catherine Ames, Fierce Hope Patient Advocacy

Talk · Track 2: Representation in Clinical Trials / Community Engagement · Back Bay Ballroom AB

Biogen & NMQF: Implementing Community-Centric Models to Improve Representation and Outcomes in Trials

Savine DaCosta, Biogen · Michael DeSalvo Solarte, National Minority Quality Forum (NMQF) · Barry Nelson, Advocate

Talk · Track 3: Operationalizing / Scaling Patient Engagement · Back Bay Ballroom CD

Medtronic: Developing Sustainable Patient Engagement through Internal Playbooks for Product Innovation

Korinne Jew, Medtronic · Maggie McGuire-Kuhl, The Michael J Fox Foundation (MJFF)

Break

Afternoon Break and Networking

Talk · Innovative Solutions & Technologies – Track 1 · Grand Ballroom

Transforming Patient Engagement: Balancing Current Needs and Future Innovation for Impact

Delphine Nicolas, Servier · Meredith Wilson, Syneos Health · Christie Fry, AbbVie

Talk · Innovative Solutions & Technologies – Track 2 · Back Bay Ballroom AB

From Data to Execution: Combining Real-World Evidence and Strategic Insights to Accelerate Clinical Trials

Tori Fahrney, BOLDSCIENCE · Josh Madej, BOLDSCIENCE

Workshop · Innovative Solutions & Technologies – Track 3 · Back Bay Ballroom CD

Interactive Session: Operationalizing Patient Engagement - Overcoming Systemic Challenges and Demonstrating ROI

Matthew Reaney, IQVIA · Nick Langevin, Boehringer Ingelheim · Angela Radcliffe, Heartbeat · Hollie Schmidt, Accelerated Cure Project, Inc. · Rohini Sen, AbbVie

Talk · Innovative Solutions & Technologies – Track 1 · Grand Ballroom

Improving Pre-Screening Processes: A Patient-Centric Approach to Streamline Recruitment

Brian Weiss, Inc. · Christie Fry, AbbVie

Talk · Innovative Solutions & Technologies – Track 2 · Back Bay Ballroom AB

From Design to Outcome: Developing Multi-Dimensional Endpoints through Patient-Centered Insights in Clinical Trials

Sébastien Coppe, One2Treat

Talk · Innovative Solutions & Technologies – Track 1 · Grand Ballroom

Optimizing Clinical Trials with Patient Experience Data (PED): A Patient Engagement Framework for more Meaningful Insights and Better Outcomes

Hayley Chapman, Patient-Focused Medicines Development (PFMD) · Susan Daniels, Lumanity · Christie Fry, AbbVie

Talk · Innovative Solutions & Technologies – Track 2 · Back Bay Ballroom AB

Understanding Patient Motivations to Design Better Clinical Studies

Alexandria Hughes, Parexel International, Inc

Talk · Innovative Solutions & Technologies – Track 1 · Grand Ballroom

Quality Over Quantity: Precision Recruitment to Improve Outcomes and Reduce Burden

Alison Bedenkop, Trialbee · Christie Fry, AbbVie

Talk · Innovative Solutions & Technologies – Track 2 · Back Bay Ballroom AB

Rethinking Patient Recruitment: Smarter Screening for Faster, More Efficient Enrollment

Anna Zorawski, Autocruitment

Break

5-Min Health Break

Panel · Grand Ballroom

Strategic Panel: Laying the Foundation for Effective and Equitable Representation in Clinical Trials

Amanda Beasley, Amgen · Willyanne DeCormier Plosky, Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT) · Katie King, Biogen · Maria Restrepo, Medtronic · Kristin Tolbert, Jumo Health · AnneMarie Winkler, GenMab

Networking

Annual Networking Reception and Optional Fundraising Activity

Other

Registration, Tea / Coffee

Other

Co-Chairs’ Welcome & Opening Remarks

Patrick Gee Sr, iAdvocate, Inc · Stacy Hurt, Parexel International Inc

Talk

Zeitgeist: Catalyzing Change - The Business Imperative of Patient-Centric Drug Development

Anthony Yanni, Astellas

Panel

Panel: Sustaining Patient Engagement Initiatives Amid Pharma Reorganizations - Ensuring Continuity and Impact

Jasmine Masullo, The Center for Information and Study on Clinical Research Participation (CISCRP) · Angela Bilkhu, Roche · Rebecca Fidler, AstraZeneca

Break

Morning Break and Networking

Keynote

Keynote: Intentions, Implementation, and Accountability: Pfizer’s Approach to Embedding the Patient Voice into Clinical Trials

Melinda Rottas, Pfizer

Talk

Partnering with Sites to Address Clinical Trial Challenges

Rosalie Filling, Endo

Talk

The Annual PatientsasPartners VIEW

Ricki Fairley, TOUCH, The Black Breast Cancer Alliance · Sue Hauck, Parexel International, Inc

Break

Lunch and Networking

Workshop

Afternoon Interactive Sessions

Break

Afternoon Break and Networking

Panel · Track 1: AI, Digital & Mobile Tech, RWD

Real-World Data for More Inclusive, Patient-Centric Clinical Trials Panel

Ebony Dashiell-Aje, BioMarin Pharmaceutical · Kert Gunasekaran, Medical Device Innovation Consortium (MDIC) · Justin Hopkin, University of Rochester / National Niemann-Pick Disease Foundation · Melissa Penn, Bayer

Panel · Track 2: Impact Measures / Measuring the Value of Patient Engagement

Proving the Value of Patient Engagement: Developing Metrics to Drive Impact and Obtain Stakeholder Buy-In Panel

Vanessa Boulanger, Boehringer Ingelheim · Korinne Jew, Medtronic · Heather Pin, Sanofi

Talk · Track 3: Site Level Diversity, End-to-End Patient Insights & Shaping Digital Endpoints

How Patient Organizations are Bridging Patient Diversity Gaps at the Site-Level

Tracy Battaglia, Yale Cancer Center · Maimah Karmo, Tigerlily Foundation

Talk · Track 3: Site Level Diversity, End-to-End Patient Insights & Shaping Digital Endpoints

BioMarin: Engaging Patients and Caregivers to Shape Digital Endpoints in Pediatric Trials

Andrew Pearlmutter, BioMarin Pharmaceuticals Inc

Talk · Track 1: AI, Digital & Mobile Tech, RWD

Moderna: Turning Patient Insights into Action - Leveraging AI to Enhance Patient Engagement

Rachael MacQueen, Moderna

Talk · Track 2: Impact Measures / Measuring the Value of Patient Engagement

Sanofi: Integrating Patient Preferences to Shape Clinical Development and Accelerate Outcomes

Catherine Coulouvrat, Sanofi

Talk · Track 3: Site Level Diversity, End-to-End Patient Insights & Shaping Digital Endpoints

Pfizer: A Collaborative Approach to Integrating Patient Insights from Early Development to Late-Stage Clinical Trials

Michael Zincone, Pfizer

Talk · Track 1: AI, Digital & Mobile Tech, RWD

Merck: Advancing Equity in Clinical Trials through Digital Accessibility and Inclusive Design

Stephen Framil, Merck

Talk · Track 2: Impact Measures / Measuring the Value of Patient Engagement

AstraZeneca: Strengthening R&D through Value-Driven Partnerships with Patient Advocacy Organizations

Swathi Ramesh, AstraZeneca

Talk · Track 1: AI, Digital & Mobile Tech, RWD

Vertex & ProofPilot: Incorporating Patient Input When It Counts - At the Beginning

Jennifer DiGaetano, Vertex Pharmaceuticals · Joseph Kim, ProofPilot

Talk · Track 1: AI, Digital & Mobile Tech, RWD

Boston Scientific: Leveraging Digital Tools and Technologies to Enhance Patient Engagement in Clinical Trials and Product Development

Dan Stephens, Boston Scientific

Other

End of Day Two

Other

Morning Tea / Coffee

Other

Day Three Co-Chairs’ Welcome

Mackenzie Abramson, Global Genes · Angi Gillen, Gilead Sciences

Keynote

Annual Keynote: How The implementation of Patient Engagement Practices and Solutions is Essential to Ensuring Drug Development Long-Term Economic Viability

Kenneth Getz, Tufts Center for the Study of Drug Development, Tufts University School of Medicine

Panel

Engaging Patients in Payer and CMS Decisions: Shaping Access to Innovative Therapies

June Cha, Milken Institute · Lee Fleisher, FasterCures Milken Institute / CMS · Campbell Hutton, Breakthrough T1D

Talk

Practical Approaches for Incorporating Patient Preferences into Clinical, Regulatory, and Market Decision-Making

Barry Liden, USC Schaeffer Center for Health Policy & Economics

Break

Morning Break and Networking

Talk

Evaluating Diversity in Clinical Trials: ICER’s New Framework for Accountability and Improvement

Foluso Agboola, Institute for Clinical and Economic Review (ICER)

Talk

FDA Guidance Updates and New Patient Engagement Initiatives

Robyn Bent, FDA · Kathryn Capanna, FDA · Cynthia (Cyndi) Grossman, FDA · Karen Jackler, FDA · Christine Lee, Achieve · Bray Patrick-Lake, FDA

Other

End of Conference