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Day 1 – Thursday 16th February 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:

Kalahn Taylor-Clark, PhD, MPH, Vice President and Head of Strategic Partnerships and Innovation, Myovant Sciences 

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

  • Can digital tools and technologies drive a significant increase in patient satisfaction?
  • Improving patient engagement and outcomes through technology
  • What are the benefits of the digital health ecosystem to patient carers and the healthcare systems?

Senior Representative, Open Health

John Daly, Head & VP, Patient Services Immunology & Enterprise Marketing, Novartis

  • 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: 

Wendy Erler, VP Patient Advocacy STAR & LEAP, Alexion Pharmaceuticals

Panelist:

Cheya Pope, Vice President of Corporate Affairs & Patient Advocacy, Epizyme

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

Mark Doyle, Director, A Life in a Day 

TOPIC FOCUSED STREAM

ACCESS & COLLABORATIONS

  • 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

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

  • Finding common shared ground between groups and build tailored
    programs within lifecycle activities
  • How can the foundational elements of patient-centred care be
    embedded in the care culture?
  • Effectively setting a common goal to set expectations on both
    sides
  • 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

RESEARCH & DEVELOPMENT

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

Ramita Tandon, Chief Clinical Trials Officer, Walgreens Health

  • 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

Charlie Barr, Chief Medical Officer, Adaptic Health

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

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

  • 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

Behtash Bahador, Associate Director, CISCRP

  • Key opportunities and challenges when working virtually
  • Top tips for effective virtual patient and public involvement
  • The future: the value of continuing working virtually
  • Review existing regulatory and ethical tenets of research and how they must be incorporated into standard practices when implementing decentralization.
  • Educating and empowering the trilogy of research – sponsors, ethical review boards and the research site to fulfil the mission of decentralization.
  • Explore and partner with existing health care solutions to
    enable established programs to implement the standards of research.
  • Collaborate with shareholders to provide innovative DCT strategies to all research sites.
  • Key factors to consider in designing and operationalising
    DCT
  • Leveraging technology and trends to engage participants
    Promoting patient-centric care
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