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Day 1


Understanding the Patient Journey, Enabling a more Patient-Centric Approach

Washington, VA, USA | 1st - 2nd September 2022

Day 1- Thursday 1st September 2022

  • Auditorium 1


  • 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?

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

  • Doctors should empower patients during the diagnosis
  • The power of a patient-centric diagnosis
  • Empowered patients are active participants in their healthcare
  • Empowered patients drive innovation that helps them and future patients

Khrystal K Davis, JD, Founding President, Texas Rare Alliance

  • 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

  • Patient Centricity requires new mindsets, relationships – and structures, company-wide.
  • No stage of development, from discovery through delivery, gets a pass.
  • No company function continues as before.
  • Company culture changes, too.
  • This isn’t easy but the results are worth the journey: to improve outcomes for patients and business performance alike.
  • If Patient Centricity is a fad, then it’s a failure. It should be the new way of doing business.

Anthony Yanni, MD, Senior Vice President and Head of Patient Centricity, Astellas Pharma

  • 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

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



  • Harnessing the power of multi-stakeholder collaboration tomake a scientifically informed recommendation
  • Lessons learned that could benefit the patients
  • Proposed interventions in helping patients to engage
  • Finding common shared ground between groups and buildtailored programs within lifecycle activities
  • How can the foundational elements of patient-centred carebe embedded in the care culture
  • Effectively setting a common goal to set expectations onboth sides
  • Why evaluate partnerships?
  • Evaluation steps
  • What to evaluate? Possible metrics
  • What methods can be used?
    Putting it into practice
  • 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 understandwhat 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

  • Understand one patient’s healthcare journey.
  • Gain insights into how patients work best with industry.
  • Understand what the patient is looking for and why it’simportant.
  • Discuss best practices for enhanced collaboration in thefuture.

Lisa Deck, Board Member, Moyamoya Foundation & RareNew England


  • Integration of the patient perspective into the developmentprocess
  • Patient-based evidence that improves the alignment of development activities with the needs of patients
  • Importance of successful engagement with patients duringCOVID-19
  • Lessons learned on improving access and experiences inclinical research
  • Explore “Return on Engagement” work done to measureand evaluate the value proposition of Patient-Centricactivities in clinical research
  • Reviewing major regulatory developments in support ofpatient-centred Research.
  • Gain insights from global surveys on patient and publicclinical research perceptions and experiences and COVID-19 impacts
  • Review concrete examples of industry Patient-Centricinitiatives 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 researchand how they must be incorporated into standardpractices when implementing decentralization.
  • Educating and empowering the trilogy of research –sponsors, ethical review boards and the research site tofulfil the mission of decentralization.
  • Explore and partner with existing health care solutions toenable established programs to implement the standardsof research.
  • Collaborate with shareholders to provide innovative DCTstrategies to all research sites.

Networking Drinks Reception - Exhibit Area

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