Patients as Partners in Clinical Research

Demonstrating HOW Patient Involvement Gets Done to Better Support Access, Decision-making and Accelerating Medicine Development

Patients as Partners® in Clinical Research offered an unparalleled opportunity to hear from pharma R&D, FDA, and patient advocacy on how patient involvement got done to drive greater efficiencies in clinical research.

2024 Keynotes

Patient
Keynote

Irisaida Mendez
Patient Advocate

Clinical Operations
Zeitgeist

Henry Wei, MD
Regeneron

Turning Service
on Its Head

Linda Moir
Former Head / Former Head of Events Services, Virgin Atlantic Customer Service / London Olympics

Patient Burden
Assessment

Ken Getz
Tufts CSDD

Navigating the Patient Advocacy Landscape

Roslyn Schneider, MD, MSc,
FACP, FCCP
BioMarin Pharmaceutical Inc

AskthePatients@Patients as Partners

We were delighted to continue the AskthePatients onsite program, then in its 10th year at Patients as Partners in Clinical Research.

AskthePatients offered a unique opportunity for individuals to connect with patients or caregivers who had actively participated in clinical trials in 1:1 meetings. This initiative offered valuable insights into their experiences, challenges, and perspectives in navigating clinical trials, contributing to shaping future progress.

Attendees had the opportunity to sign up on site to meet with the participating patient advocates.

2024 Co-Chairs

Ebony Dashiell-Aje, PhD
BioMarin Pharmaceuticals Inc

Ricki Fairley
TOUCH, The Black Breast Cancer Alliance

Stacy Hurt
Parexel International Inc

Sabina Kineen
Patient Advocate

Rebecca Vermeulen
Roche

Barry Nelson
Patient Advocate

"I prioritize attending the Patients as Partners conference because of the valuable learnings I glean from those attending. The energy in the room is always inspiring and the connection with colleagues is fulfilling. This is a community that comes together to share common ideas and open dialogue about the challenges we need to overcome so that we can work together and amplify the patient voice."

- Rebecca Vermeulen, Genentech, a Member of the Roche Group

2024 Topics Included

Diversity & Inclusion

• Community-based Organizations’ Insights into Enhancing Clinical Research Initiatives
• Strategies for Enhancing Clinical Trial Participation from Diverse Linguistic Background
• Amgen's Ongoing Commitment to Diversify Clinical Trials for Inclusive Healthcare Advancements
• Innovative Approaches in Pediatric Trials: Elevating Patient-Centric Solutions for Family Support

Early Patient Engagement/Operationalizing Patient Engagement

• Blueprint for Cultural Shifts, Internal Adoption, and Demonstrating the Impact of Patient Engagement
• Maximizing Impact and Decision-Making through Early Development Patient Insights
• Strategically Integrating Patient and Study Coordinator Panels Across All Program Teams, Elevating Clinical Trial Efficiency and Outcomes from Early Study Design Onwards
• Bridging the Gap between Clinical Trial Study Teams and Patient Perspectives
• Empowering Clinical Sites: Strategies for Streamlining Trials and Enhancing Patient Care
• Leveraging Sustainability, including ESG, to Empower Patient Engagement Goals in Medicine Development

DCTs and Digital Health

• Optimizing the Integration of Digital Health Technologies in Clinical Trials for Improved Accessibility, Flexibility, and Streamlined Study Designs
• Advancing Digital Health Literacy for Optimal Engagement and Participation in Clinical Trials: Strategies and Implementation
• Case examples on integrating digital technologies in trials and lessons learned

Patient Experience Data/Data Return

• Patient Data Access: Proactive Solutions for Standardizing and Personalizing Data Return in Clinical Trials
• How to Generate and Apply Patient Experience Data (PED) to Identify Patient Unmet Needs, Health Outcomes and Impact
• Crafting an Effective Clinical Data Sharing Solution: Insights from Pfizer's Patient Data Return Initiative

Patient Engagement Impact Measures

• Establishing KPIs and Metrics that Reflect Value and Impact of Patient Engagement Across R&D
• Making Patient Engagement a Business Imperative within R&D - Establishing a Value and Measurement Framework to Support Patient-centered Innovation

Interactive & Group Sessions

• Defining What Success Looks like for Engaging Participants and Enhancing Collaborations in Clinical Trials
• Birds of a Feather Roundtable Discussions
• Audience Pop Up Session on Reducing the Burden to Patients

FDA & HTA Regulatory Updates

• FDA agency updates & new guidances for patient centric trials
• FDA Town Hall Q&A
• HTA Initiatives for Inclusion of Patient Perspectives in Decision-Making Reviews

Patient Feedback

• Patients View on Clinical Research
• Partnering with Pharma and Advocacy
• Clinical Trial Wishlist Changes
• And More

Ask the Patient/Patient-Led Sessions

• Meet with Patients One-on-One to Learn From their Clinical Trial Experiences
• Co-Creation Session on Patient Centered Clinical Trial Solutions
• Applying Patient Engagement Initiatives and Demonstrating Impact Session Leaders

Attendees received direct access to:

16 Case study sessions from Pharma R&D and Patient organizations on HOW they are making significant progress in clinical outcomes by engaging patients through their clinical research experience

FDA agencies report on their guidelines to advancing patient involvement in medicines development. Attendee questions are welcome

Interactive sessions on co-creating solutions to the typical barriers patients face in participating in a clinical trial

Patients who provided their perspectives on clinical trials and opportunities for improvement

7+ hours of networking ranging from breakfasts, breaks, receptions, partnering opportunities and more

What was Covered at the 2024 Summit

The 11th annual Patients as Partners® in Clinical Research gave attendees representing clinical operations and patient engagement a wide choice of real-world examples from peers in pharma R&D, five FDA agencies, and patient advocacy on how patient involvement was implemented to drive greater efficiencies in clinical research. Each session demonstrated the what, where, when, and how and measured the impact of those initiatives.