July 22-23, 2021
Online Livestream
Chief PatientOfficer Summit
Empowering Leaders of Engagement, Advocacy, Communications and Support Services to Reflect the Patient Experience in Every Stage of Operations
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DGE invites you to its inaugural Chief Patient Officer Summit – the only industry event to specifically focus on opportunities and challenges facing Chief Patient Officers and executives focused on building the best possible patient experience. From identifying unmet patient needs in discovery research… to accelerating greater diversity and inclusion in clinical trials… to ensuring affordable access and patient support, the CPO Summit provides depth and breadth of the critical issues and path forward.
Agenda at a Glance
Topics covered will include:
  • Effective and innovative ideas for working compliantly with patients and patient advocacy organizations
  • Forge internal cross-functional partnerships with clinical operations and regulatory teams to bring the patient voice into clinical trial design
  • Strategize global approaches for working with advocates in various health care systems and cultures around the world
  • Share ways to make patient centricity part of your organization’s HR onboarding process
  • Understand differences and best practices in advocacy and engagement roles pre and post clinical at small, mid and large companies
Top Reasons to Attend
  • Hear keynotes from Chief Patient Officers about innovative ways to lead teams to achieve the goals of a patient centered organization
  • Gather information about the top compliance risks involved in working with patients, patient advocacy groups and providing patient support services
  • Adopt new ideas for engaging patient perspectives on study design
  • Include patient voice in digital health tools including wearables and apps and throughout the digital health ecosystem
  • Strengthen collaborative partnerships with diverse patient organizations to ensure inclusion and health equity
Who Should Attend

Chief Patient Officers and professionals working in related areas, including:

  • Engagement
  • Advocacy
  • Experience
  • Support Services
  • Adherence
  • Communications
  • Patient Affairs
  • Patient Centricity
  • Digital Engagement
  • Medical Affairs
  • Education
  • Access
  • Patient Assistance Programs
  • Clinical Operations
  • Rare Disease
  • Disease Awareness
  • Government Affairs
  • Public Affairs
  • Diversity and Inclusion

If you are a patient, caregiver or a patient advocacy organization with 501(c) 3 tax exempt status and interested in attending, please contact Kathy Stewart kstewart@dgeconfs.com for more information.

Event Sponsors
Conference
New Topics
Featured Speakers
Amy Nicole Nayar
Vice President, US Patient Advocacy & Government Affairs
Novartis Gene Therapies
Andra Stratton
President
Lipodystrophy United
Angie Siecker Wilson
Senior Director Alliance and Advocacy Relations/Government Affairs
Genentech
Catherine Jackson
Senior Director, Patient Engagement and Advocacy
Mallinckrodt
Cheryl Roche Alexander
Regional Care Lead
UCB
David Marshak
Senior Manager, Patient Engagement
Foundation Medicine
Elizabeth George
Clinical Trial Diversity Leader, former Director Clinical Trial Diversity
GSK
Francesca Domenech Wuttke
Chief Digital Officer
Almirall
Gwen Petersen
Patient Advocate
Jamie Ring
Jamie Ring Advocacy Consulting
Jayne Gershkowitz
Chief Patient Advocate
Amicus Therapeutics
Jean Campbell
Principal, JF Campbell Consultants; Founding Board of Directors
Professional Patient Advocates in Life Sciences (PPALS)
Jennifer Helfer
Senior Director, Patient Advocacy & Engagement
Encoded Therapeutics
Jessica Riviere
Vice President Global Patient Advocacy and Patient Engagement
Ultragenyx
Kate Tighe
Head, US Public Affairs & Patient Advocacy
Sanofi Genzyme
Kathy Machuzak
Director, Patient Advocacy
Travere Therapeutics
Kathy Stagni
Executive Director
Organic Acidemia Association
Maxwell Mulcahy
Associate Director, Patient Engagement
Alkermes
Michele Rhee
Vice President Patient Affairs and Advocacy
X4 Pharma
Mike Bodulow
Senior Manager, Global Patient Advocacy & Engagement
BioMarin
Pamela Mace
Executive Director
Fibromuscular Dysplasia Society of America
Regan Sherman
Head Patient Advocacy Relations
Orphazyme A/S
Scott Gray
CEO
Clincierge
Sonal Bhatia
VP, North America, North America Medical Lead, Rare Disease
Pfizer
Terry Jo Bichell
Founder / Director
COMBINEDBrain
Theodora Weisz
Patient Centric Drug Development – Patient Advocacy and Public Affairs Lead EMEA/APAC
Ionis Pharmaceuticals
Tom Croce
Vice President Patient Advocacy
bluebird bio
Veronica Moore
Manager Patient Advocacy
Horizon Therapeutics
Wendy Erler
Vice President Global Head Patient Experience, Insights and Patient Advocacy
Alexion
Event Schedule
ALL TIMES ARE IN EST
The rise of the Chief Patient Officer signifies new growth and opportunities for leaders dedicated to building relationships with patient communities. Learn more about how these leaders are working cross functionally to integrate the patient voices.
  • Cultivate the role of the Chief Patient officer in setting the tone for a patient centered corporate culture
  • Partner with colleagues across the organization to strengthen compliance and integrity
  • Develop a mission focused strategy for putting patients and families first with all stakeholdersa
There are a number of approaches for partnering with patients across diagnostics and therapeutics, through advisory boards, and long-term relationship building.
  • Examine the differences and similarities in how companies channel patient perspectives
  • Discuss the structure of advocacy teams evolving based on patient community landscapes and bringing patient insights in earlier especially around gene therapy drug development
  • Explore what areas may be standardized and what aspects are unique to each company
  • Share ideas for including patient centricity in your organization’s HR onboarding process
Hear about Alexion's design thinking accelerator to develop a methodology for delivering world class solutions. Through deeper understanding, you can get a more lasting and functional incorporation of patient insights.
  • Ensure patient perspectives positively influence corporate decision making to ultimately enable patients to have access to meaningful therapies
  • Influence corporate culture with patient and caregiver perspectives and insights
  • Implement 'design for patient centricity'
Building more patient-centric medicine requires trust from all collaborators. It’s a good idea to begin a lasting alliance by thoroughly discussing realistic expectations for how the relationship might work.
  • Establish transparency in communication at the earliest opportunity
  • Recognize what is not in the best interest of each party in order to reach common goals
  • Promote opportunities to share information back with patients and advocates about how their feedback and insight were used
Understand more about the rise of advocacy consortiums, how they can be organized, and how they provide value to potential collaborators.
  • Assess the structure of Combined Brain and how it works
  • Recognize opportunities to work with collaborators
  • Examine ways to integrate patient voice into the identification of endpoints and outcomes
To safeguard long-term relationships with patient advocates, leaders need to develop internal corporate guidance with your compliance departments.
  • Understand code of conduct and guidance on patient and patient organization interactions
  • Be clear on compliance guardrails for patient support services and patient assistance programs
  • Assess fair market value compensation for patient engagement
Gain valuable feedback from patients about how to improve collaboration.
  • Delve into explaining the positive experiences
  • Identify what you are looking for that you may not currently be receiving
  • Discuss opportunities for enrichment in the near future
Set goals, define your accomplishments, and advance your organization’s patient engagement and advocacy plan.
  • Discuss metrics including co-creation of materials, program close out, and relationship management
  • Consider ways to go about personal goal-setting
  • Align your goals with ways to make patient engagement and advocacy success increasingly more scalable throughout your organization
ALL TIMES ARE IN EST
The health care digital technology ecosystem has everything to do with the patient. Explore the cutting edge in digital health for patients from the perspective of a chief digital officer.
  • Capitalize on opportunities to build a patient centric digital strategy
  • Anticipate future progress for gathering patient perspective on wearables, sensors, connected devices and mobile apps
  • Update on innovation in connectivity among patients and physicians

Designing more diverse and inclusive clinical trials is a critical goal throughout industry. Come together to identify barriers for rare disease diversity patients and other disease areas when it comes to access to healthcare.

  • Consider the role industry can play in developing relationships with diverse patient populations
  • Discuss solutions to addressing barriers to access
  • Evaluate ways to improve the impact of clinical trial awareness and education within diverse patient populations
A discussion about the outcomes that matter most to patients is helpful when designing adaptive protocols. By properly gathering patient suggestions, you can more efficiently prioritize ideas.
  • Collaborate with clinical operations and regulatory teams to implement changes to study protocol as suggested by patients
  • Devise a plan for closure when the trial ends including information for the patient about recommended changes implement/not implemented including patient gratitude programs
  • Explore patient’s technology preferences

Advocacy engagement can be successful, even when a clinical trial is not; lessons learned from conducting a successful (if negative) trial during COVID

  • Hear about how a patient-centric study design rescued a late-stage clinical trial during the COVID 19 pandemic
  • Strategize how to equip patient communities to navigate disappointing outcomes
  • Examine ways for bringing relationships to a close when a clinical program is ended
Determine an advocacy strategy and expectation plan from early drug discovery through commercialization. Hear tips for navigating the journey and understand touchpoints along the way.
  • Determine what the asset may look like over the next 5-10 years
  • Drive strategies and priorities with patient and caregiver perspectives
  • Consider an exit strategy if the therapy doesn’t make it to the finish line

Understand how patients, caregivers and advocates’ knowledge, experience and preferences can shape sustainable access to treatments. Discuss ways to structure respectful, compliant engagement and partnerships on access-related topics with the patient advocacy community.

  • How does the patient advocacy community engage in access policy shaping and decision making on treatments?
  • How can the patient voice be heard more clearly in the process, particularly in a time of constrained national health care budgets?
  • How can the patient community become even more involved in the design and implementation of model access programs?
  • What is an appropriate role for chief patient officer when companies engage with the patient community around access to their treatments?
  • What new skills may be required of patient advocacy professionals to meet the sustainable access challenge?

Patient support programs must incorporate the needs of patients and advocates in order to make a meaningful difference.

  • Learn from examples of innovative patient support programs in the bio pharmaceutical industry
  • Discuss the role of patient activation and capturing the patient voice
  • Gain a perspective on how technology can be used to achieve this
Examine the impact of early involvement of the patient throughout the journey from clinical trials design through market access processes.
  • The role of patient advocacy
  • Anticipate how early engagement of patients impacts every part of the business
  • Important steps creating trustful relationships with patient groups and caregivers
  • How do we envisage to shift patient centricity from theory to reality?
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Workshops
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