9th Patient-Centered Engagement World Congress 2026 Americas
“Part of The Patient Centricity & Collaboration Series”
Driving Partnership, Access & Measurable Outcomes
5th – 6th November 2026, Boston, MA, USA
Christian Rubio, Executive Director, EverythingALS
Co-Designing Engagement with Patients
- Moving beyond patients as passive recipients to active collaborators.
- Establishing mutual responsibility for clinical and engagement outcomes. Building foundational trust to support all engagement efforts.
- Designing organizational systems around the actual needs and experiences of patients.
Moderator:
Linda Kollmar, AVP, Patient Insights & Engagement Value & Implementation, Merck
Panellist:
Jessica Bateman, Senior Director, Advocacy & Professional Relations, Geron Corporation
Tom Croce, VP, Global Patient Advocacy & Engagement, Jazz Pharmaceuticals
Susan Hayes, Head Patient Engagement and Insights, Translational Clinical Oncology, Novartis
Jennifer Helfer, Senior Director, Patient Advocacy & Engagement, Viridian Therapeutics
Nikki Rohan, VP, Global Advocacy and Community Engagement, Bicara Therapeutics
Jaye Bea Smalley, Executive Director, Patient Advocacy, Kyverna Therapeutics
Neil Mathis, Head of Communications, The Stiff Person Syndrome Research Foundation
- How do we define and measure the success of our patient advocacy efforts?
- How do we show alignment with the interests of our company and our patient group partners?
- How do we articulate our impact to senior leadership in ways that resonate and ensure lasting buy-in?
Amy Grover, Executive Director of Patient Advocacy at Catalyst Pharmaceuticals
- Strategies for collaborative experience design.
- Ensuring digital platforms meet diverse patient needs.
- Establishing metrics to evaluate collaborative success.
- Governance frameworks for sustained partnership
RESERVED
- How AI is transforming where patients seek health information and what this means for the evolving role of patient advocacy organizations
- How patient advocacy organizations and industry can work together to help patients become informed, confident, and responsible AI users
- Why patient trust, not just privacy and compliance, must be the foundation of every Responsible AI strategy
- Practical approaches organizations can take today to prepare for responsible AI adoption while protecting patients and reducing harm.
Courtney Firak, MPH, Principal Consultant, Firak Consulting Group
- Design trials around participant convenience and accessibility.
- Improve equitable access and representation by expanding community-based research.
- Strengthen participant retention through transparent communication and culturally responsive engagement.
- Leveraging digital tools such as eConsent, wearables, telehealth, and mobile applications.
RESERVED
Stream Session A: CONNECTED CARE ECOSYSTEM
Patients and their families have questions throughout the disease journey. This session brings together Patient Affairs and Real-World Evidence to explore how patient intelligence, clinical trial data, and real-world studies work
together to answer those questions, and how those answers get back to the community.
- How patient intelligence surfaces what matters most to patients and caregivers, and how that shapes what evidence gets generated
- What clinical trials and real-world studies each contribute, and why no single source answers every question patients have
Yiyi Xia, Senior Director, Patient Engagement Strategy and Operations, Sarepta
Pamela Bradt, Exec. Medical Director & Global Head,
RWE & Clinical Epidemiology, Sarepta
- Redefine patient-centeredness in daily care
- Capture lived experience: stories, surveys, real-world data
- Turn insights into meaningful metrics
- Build partnerships: co-design with patients and clinicians
- Apply findings to improve access, equity, and outcomes
Chisa Nosamiefan, Founder & CEO, Labalaba Health- Developing a national program in collaboration with patients, advocates and anal cancer experts to normalize candid conversations about anal cancer by confronting embarrassment that can silence vital communication with HCPs, delay diagnosis and isolate people from key social supports during their cancer journey.
Sandra Sherman, Director, Patient Advocacy &
Communications, Incyte
- Establishing a clear value narrative for patient engagement.
- Identifying meaningful metrics and measurement limitations.
- Building evidence through strategic data collection and outcomes tracking
Amy Mackey, Director of Patient Insights and Engagement, Gynecologic Oncology, Merck
- Over emphasis on brands not on eco-system
- Where your function sits internally drives priorities
- Relationships are often transactional
- Appetite for risk limits true engagement
- Annual budget cycle is disruptive to long-term initiatives
- Potential solutions and ideal measurements
Jessica Riviere, Head of U.S. Patient Advocacy and
Engagement, GSK
- The Common Thread the human Experience
- Negative language in medical records-Non Compliant without the “Why” question
- Lack Cultural Competence related to the Elderly Black Population
Mauvareen Beverley, Patient Engagement and Cultural Competence Specialist
Stream Session B: PATIENT CENTERED RESEARCH
- Exploring how machine learning algorithms can analyze vast datasets
- Assessing the role of remote monitoring tools in gathering continuous, real-time data to improve trial accuracy and reduce the burden of on-site visits.
- Addressing the ethical imperatives of AI implementation, specifically regarding how to mitigate algorithmic bias and maintain patient trust through transparent data practices.
- Perspectives on AI-supported engagement
Panellists:
Behtash Bahador, Senior Director, Community Engagement & Partnerships, CISCRP
Sarah Small, Product Line Owner, iCare – Advanced
Analytics and AI, Sanofi
Alexandria Wise-Brown, Therapeutic Area Lead,
Population Science, Roche
Neha Khairnar, MS, MBA, Software Engineer | Beth Israel Lahey Health (BILH) – Lahey Clinic
- Building authentic relationships through localized partnerships with faith-based organizations and health clinics.
- Developing protocols and materials tailored to diverse linguistic and cultural needs.
- Addressing logistical barriers like transportation and scheduling through decentralized trials or reimbursement programs.
- Establishing benchmarks for success based on longitudinal trust, community impact, and staff
diversity.
Hope Ventricelli, Senior Manager, Community Events and Programs, CISCRP
- What “fine” is hiding: insights as living infrastructure to maintain, not a one-time deliverable
- Designing questions that surface friction points early, and finding meaningful insights even after protocol lock
- Shifting from post-decision feedback to insights that shape operational decisions before they’re made
- Building feedback loops that reveal whether an intervention is moving engagement or retention
- How foundational insight drives different operational strategies depending on study phase, budget, and timeline
Ariel Rosen, Founder, The Human Lens
Alexia Medici, Co-Founder & COO, CLINVANA 
- A presentation that will provide you with insights and experience in developing and executing a succesfull digital patient recruitment strategy all the way from catching early awareness upon til enrollment.
- You will also be presented with specific examples of communication materials and advertisement and the do’s and dont’s of running digital patient recruitment for clinical trials.
Rasmus Hjorth, Patient Engagement Director, James
Lind Care
- Discuss how patient-centricity revolves around patient feedback and why this is so imperative to retention rates.
- Call to action to implement Patient-Led Trial Design and what that looks like.
- Ways pharma can best collaborate with non-profit partners to support patient resources and patients involved in clinical trials, featuring a real example of how Serenely Guided Foundation achieved this together with the rare community and what success looked like.
Sarah Woods, Founder, Serenely Guided Foundation
- Best practices for developing rigorous patient journey maps that capture meaningful patient, caregiver, and healthcare professional perspectives
- How to transform patient insights into peer-reviewed publications, conference presentations, and evidence that informs clinical development and future research
- Lessons learned from cross-functional collaboration with patients, advocacy organizations, clinicians, and researchers to ensure findings are scientifically robust and broadly impactful
Rosemarie Sellati, VP, Patient Advocacy and
Professional Relations, Soufflé Therapeutics
- Apply the IMPACTTM framework as a strategic planning tool to build, evaluate, and evolve advocacy engagement strategies across therapeutic areas and disease states.
- Develop a value proposition for advocacy partnerships that resonate with advocacy groups, internal stakeholders, leadership, and cross-functional teams.
Jaye Bea Smalley, Executive Director, Patient Advocacy, Kyverna Therapeutics Nikki Rohan, VP, Global Advocacy and Community Engagement, Bicara Therapeutics
- Identifying the systemic hurdles that prevent genuine collaboration between industry, healthcare providers, and patients.
- A critical look at current institutional gaps in patient engagement.
- Discussing how organizations can remain answerable to the populations they serve.
- Establishing clear benchmarks for what meaningful, patient-focused outcomes look like.
Moderator:
Panelist:
Julissa Viana, SVP, Corporate Communications, Investor Relations & Patient Advocacy, Verastem Oncology
Patricia Weltin, CEO/Founder, Beyond the Diagnosis
Courtney Firak, MPH, Principal Consultant, Firak Consulting Group
Event Partners
