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Day 1 – Thursday 30th November 2023

TRENDS & STRATEGIES IN INTEGRATING PATIENT VOICE

  • The value of engaging and communicating with the patient in every part of the clinical research process
  • Examining the right approach for patient and industry to positively impact healthcare costs and patient outcomes
    through patient engagement
  • How can patient expertise create significant value to the industry?
  • What are the best practices and strategies to guarantee that patient centricity is at the forefront of pharma?

Moderator:

Panelist: 

Molly MacDonald, Founder, CEO, The Pink Fund

Heidi Floyd, Patient Experience SME, Cancer Patient, Author, Advocate

Christine Von Raesfeld, Founder & CEO, People with Empathy

  • Many biotech/pharmaceutical companies are talking about ”Patient Centricity”, but how can a company actually operate
    in a patient-centric way to create meaningful value?
  • Learn best practices to transition from being product centered to patient centered
  • Discuss strategies to embed patient centricity throughout your organization.

Judy L. Campagnari, Executive Director, Global Patient Insights & Solutions, Alexion Pharmaceuticals

  • Defining the terminology – why this is important
  • Leadership support – why it matters and how to build it
  • Create an Ambassador Program – expand your reach
  • Tools & resources – examples of tools that support employees in being patient centric
  • The journey – why it is a marathon not a sprint -evolving and continually learning as an organization

Keri Yale, Head, Patient Affairs and Engagement, Boehringer Ingelheim

This case study led presentation will explore this evolving dynamic to help formulate best practice approaches to these partnerships by:

  • Sharing insights into a live real-world example of this type of partnership
  • Explaining the roles and responsibilities in achieving a positive outcome
  • Providing key learnings to the evolving process
  • Supplying the audience with guiding principles for future partnerships
 

 

  • Learn about the latest technologies that can improve the efficiency and effectiveness of clinical trial design, addressing issues like increasing complexity
  • Discover the principles and best practices for clinical trial design that can increase the likelihood of success, through a combination of literature analysis and practical experience
  • Examine the challenges faced by patients during clinical trials and learn about potential solutions that can reduce the burden and increase the benefits for patients
 
  • Understand where patient centricity can advance the interests shared by industry and the patient community
  • Consider how focused goals and programs can strengthen research and development, commercialization and access
  • Focus on opportunities to integrate patients, caregivers, consumers and advocates’ key concerns and insights into company plans and decision making
  • Discuss applications of this targeted approach to your patient centricity goals and programs

 Tom Croce, VP, Global Patient Advocacy and Engagement, Jazz Pharmaceuticals Inc

  • Gain insights on how they view a successful patient-centred collaboration
  • Understanding what the patient is looking for and what is important
  • Discuss opportunities for enhanced collaboration in the future
  • Valuable feedback and strategies on how to improve collaboration that makes a real-world difference

Moderator: 

 Keri Yale, Head, Patient Centricity & Engagement, Boehringer Ingelheim Pharmaceuticals 

Panelist:

Heidi Floyd, Patient Experience SME, Cancer Patient, Author, Advocate

 Ambre L. Minty, Founder, Living With Dys

TOPIC FOCUSED STREAM

ACCESS & COLLABORATIONS

 Richard Jones, Managing Director – Patient Engagement, OPEN Health

  • Health Systems sharing clinical data to advance science
  • Patient Advocacy Group’s use of multi-stakeholder
    registries
  • 21st Century Cures Act enabling patients to have access to
    all their clinical data and agency to license
  • Combined with emerging trusted data market approaches
  • Creates the opportunity for patient-centric ecosystems at
    scale to accelerate discovery -> clinical adoption

Jason R Crites, Founder, CEO, Assurance Health Data

  • Brief Background on Pfizer Oncology’s Patient Centricity Ecosystem (POPCE): Launching in coordination with advocacy community
  • How to Be Successful –Building trust withing the advocacy community & Identifying Alignment
  • Why it works – Communication, Collaboration & Commitment over time
  • Measure, Measure, Measure – Sharing Successes & Evaluating over time

Marianne Gandee, VP, Patient Solutions & Alliances, Pfizer Oncology

  • Financial Toxicity During Breast Cancer Treatment: A Qualitative Analysis to Inform Strategies for Mitigation

Molly MacDonald, Founder, CEO, The Pink Fund

  • Have patient “Advisors” on a panel for clinical trials.
  • Have a patient advocate/liaison collaborating. Patient Surveys

 Ambre L. Minty, Founder, Living With Dys

 

  • Education of the process of clinical trials
  • Listen to the Patient needs and help them to understand what the focus of the trial is. Understanding Pharmaceutical costs of trials and research
  • Dealing with an illness with multiple organ involvement.
  • Rare Disease

 Frank Rivera, President, Stronger Than Sarcoidosis

  • Learning: Balancing health system priorities and resources
    to address patient community needs.
  • Creating policy to end disparities and open access to new
    regenerative and translational therapies.
  • Increasing funding and technical support to CBOs for
    community outreach and education efforts

Ginger Davis, President, Sickle Cell Thalassemia Patients
Network

  • How we might innovate our way out of increasing erosion of trust between patients and “the system”, by learning from CPG use cases, nonprofit communications, digital health solutions, shifting trends in consumer media consumption, shared accountability, and increased federal protections.

RESEARCH & DEVELOPMENT

 Monica Dudley-Weldon, President/CEO/Founder, SYNGAP1 Foundation

  • Integration of the patient perspective into the development
    process
  • Challenges and strategies for improving study protocols
  • Streamline your clinical trial process to drive enrollment

 John Campbell, Head of Decentralized Trials, Walgreens Health

  • Patients and caregivers know best when it means improving the quality of life.
  • Reality is much different than theory.
  • Benefits of real-world experience inserted in basic science equals endpoints and outcomes that can be overlooked as unimportant.

 Monica Dudley-Weldon, President/CEO/Founder, SYNGAP1 Foundation

  • Unique patient populations
  • Clearly identified and addressable pathologies
  • Personalized medicine
  • Role of digital / AI

Mike Davis, Head, Global Epilepsy & Rare Syndromes Organization,
UCB

  • Contributions that advocacy groups can make to clinical trial development
  • The importance of knowing the people, their disease, and its burdens
  • Successful collaborations are a win for all

 Julie Breneiser, Executive Director, Gorlin Syndrome Alliance

  • Defining Patient Centricity Explore “Return on
  • Engagement” work done to measure and evaluate the value proposition of Patient-Centric activities in clinical research
  • Reviewing major regulatory developments in support of patient-centred Research.
  • Gain insights from global surveys on patient and public clinical research perceptions and experiences and COVID- 19 impacts
  • Review concrete examples of industry Patient-Centric initiatives and projects

 Jill McNair, Chief Growth Officer, CISCRP

  • Patient perception and usability of drug products is critical for efficacy of prescribed treatments.
  • Drug products should be designed to meet the specific needs of the target patient populations.
  • A patient centric drug product design approach is critical to support optimal therapeutic outcomes for drug products.
  • Roll out of digital technology will support the implementation of a patient centric mindset for drug product design.
  • Case-studies for drug products developed via patient centric drug product design

 Nélio Drumond, Associate Director, Lead Process Scientist, Takeda Pharmaceutical

  • Across the spectrum of disease, from common to rare, patient data is becoming a critical driver of drug discovery, development, diagnosis, commercialization and inclusive and equitable access to trials and treatments.

Craig Martin, President, RITHM Health, Board Director, Global Genes

  • Key factors to consider in designing and operationalising
    DCT
  • Leveraging technology and trends to engage participants
    Promoting patient-centric care
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