9th Patient-Centered Engagement World Congress 2026 Americas
“Part of The Patient Centricity & Collaboration Series”
Driving Partnership, Access & Measurable Outcomes
17th – 18th September 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
Nikki Rohan, VP, Global Advocacy and Community Engagement, Bicara Therapeutics
Jaye Bea Smalley, Executive Director, Patient Advocacy, Kyverna Therapeutics
- 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
- Addressing misinformation in healthcare and medicines
- Ethical patient communication strategies
- Rebuilding confidence in healthcare institutions
- Developing strategies to manage and correct inaccurate information proactively.
Yiyi Xia, Senior Director, Patient Engagement Strategy and Operations, 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 flexible frameworks that integrate both digital and physical touchpoints.
- Implementing accessible outreach tools for those with limited technical proficiency or connectivity.
- Identifying geographic and socioeconomic barriers to participation.
- Evaluating the hardware and infrastructure requirements necessary to support sustainable digital inclusion.
- Enhancing patient participation to drive better health outcomes.
- Ensuring engagement strategies directly support performance metrics.
- Incorporating direct patient feedback into clinical workflows.
- Utilizing data visualizations that accurately reflect the lived experience of patients.
Amy Mackey, US Patient Advocacy, Attending Physician, 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
- 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.
Behtash Bahador, Senior Director, Community
Engagement & Partnerships, CISCRP
- Embedding patient insights into clinical trial design and development
- Improving diversity, recruitment and retention through patient-centred research strategies
- Co-creating meaningful clinical outcomes with patients and caregivers
- Leveraging digital innovation and real-world evidence to advance patient-focused development
- 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
