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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

  • Discussion points to follow

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

  • Ensuring all tailored experiences are built upon explicit patient consent.
  • Implementing rigorous protocols to identify and address algorithmic bias.
  • Providing clear, accessible insights into how data is utilized.
  • Maintaining essential human oversight in all AI-driven decision-making processes.
  • 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

  • Developing flexible frameworks that integrate both digital and physical touchpoints to reach a broader audience.
  • Implementing accessible messaging and outreach tools for individuals with limited technical proficiency or high-speed connectivity.
  • Identifying and addressing the specific geographic and socioeconomic barriers that hinder participation in these regions.
  • Evaluating the hardware and infrastructure requirements necessary to support sustainable digital inclusion.
 
  • Reducing administrative friction to ensure faster access to necessary treatments.
  • Providing immediate clarity on coverage to allow for more informed decision-making.
  • Guidance to navigate the complexities of specialized medical needs.
  • Integration of financial support resources to help patients manage out-of-pocket costs effectively.
  • 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

  • Developing the necessary skills for empathetic and effective interactions within the healthcare workforce.
  • Implementing core principles to ensure care delivery is sensitive to the history and needs of all patients.
  • Strengthening the ability of staff to engage respectfully and effectively across diverse cultural backgrounds.
  • Strategies for aligning organizational incentives directly with patient experience outcomes.
  • 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

Behtash Bahador, Senior Director, Community
Engagement & Partnerships, CISCRP

  • 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
 
  • Analyzing remote monitoring and nursing visits for data integrity and retention.
  • Technology access and digital literacy
  • Evaluating and mitigating logistical shifts from clinics to families.
  • Reviewing hybrid trial case studies to optimize the participant journey.
 
  • 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

  • How a simple “patient experience” initiative transformed trial engagement
  • Building personalized, non-clinical support systems to create a sense of partnership, not participation
  • Demonstrating the tangible impact of patient centered care on trial recruitment and retention

Corey A. Straub, Patient Advocacy & Engagement
Lead, QurAlis 

  • 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

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