Patient Centricity & Collaboration World Congress -

6th Patient Centricity & Collaboration World Congress 2024 Americas

Patient empowerment and understanding to inspire and create a meaningful impact

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Patient meets Innovation & Collaboration

Understanding the Patient Journey, enabling a more Patient-Centric Approach.

Introduction
Insight
Who Should Attend

Paradigm Global Events is proud to welcome you to the upcoming Patient Centricity and Collaboration World Congress 2024 Americas.

The two-day Congress aims to build meaningful collaborations within the industry, advocacy groups, clinicians, researchers, and most importantly, patients and their caregivers. Gain practical strategies and best practices on challenges, innovations, technologies, and concepts in achieving this goal.

GAIN LATEST INSIGHTS ON:

What does patient centricity mean for the pharmaceutical and life science industry?
Why does the industry need to be a part of the patient-centric movement?
Patient-centric initiatives that have a tremendous impact
Successful strategies and best practices to successfully manage patient-centricity in healthcare
How to develop and execute a strategy to improve patient engagement?
Benefits of patient engagement in drug development and discovery process
Evolving challenges and key considerations inthe ethical and compliant use of relevant data
The potential value of providing access to relevant data to all stakeholders
How to maintain mutually beneficial ongoing partnerships between the patients and industry?
Overcoming myriad challenges to make the clinical trial and drug development process more patient-centred or patient-focused
Setting the pace and expectations thru collaborations
Role of researchers in bridging the communication gap between life science industry and the patient it serves
How to achieve a deeper understanding of the patient experience in the real world.
Practical ways in putting the patient at thecentre of a powerful brand

WHO SHOULD ATTEND?

This Congress is beneficial to patients, pharmaceutical, biotech companies, researchers, physicians, patient advocacy groups, regulatory agencies, technology, and healthcare companies.

Network with representatives involved in the following areas:

Head of Patient Engagement
Patient Services
Engagement Strategy
R&D Patient Engagement
Medical Affairs
Regulatory Affairs and Policy
Patient Support and Patient Engagement
RWE, and Data Management
Quality and Compliance
Clinical Development
Programme Management
Supply Chain Management
Patient Access
Clinical Research
Global Head, Digital Accelerator
Patient Engagement & Portfolio Strategy
Patient Support Strategy & Insights
Patient Experience

Medical Affairs, Global Patient Advocacy & Alliances
Government Policy and Advocacy
Digital Patient Experience Lead
Clinical Operations
Clinical Insights and Experience
Head of Strategy, Access Services
Vice President, Site Collaborations and Patient Centricity
Head of Neuroscience
And much more...

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speakers

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Key Industry Expert Speakers

2023 / 2024 Speaking Faculty

Comfirmed speakers Apply to speak

Schedule

Content Rich Program Agenda! Featuring Keynote Presentations, Stream Sessions, Panel, and Round Table Discussions.

Day 1 03/10/2024
Day 2 04/10/2024

Auditorium 1

07:45 - WELCOME COFFEE & REGISTRATION

08:00 - CHAIRPERSON’S OPENING REMARKS

TRENDS & STRATEGIES IN INTEGRATING PATIENT VOICE

08:10 - OPENING KEYNOTE PANEL: Realizing the importance of patient needs and engagement in improving patient outcomes?

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

08:50 - PLENARY SESSION: Walk the Talk – Transforming from a Product Centric to Patient Centric Company….Best Practices and Learnings

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

09:20 - PLENARY KEYNOTE: Integrating social determinants and social needs into patient-centric healthcare models with an emphasis on the patient journey and experience for low-income patients

Alan J. Balch, PhD.,CEO, National Patient Advocate Foundation

09:50 - MORNING NETWORKING REFRESHMENTS

10:30 - PLENARY KEYNOTE: The FIVE things you NEED to do to enhance patient centricity at your organization

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

11:00 - SPONSORED SPOTLIGHT: When the tables turn on Patient Community and Pharma collaboration.

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

11:30 - SPONSORED SPOTLIGHT: New Advanced Technologies to Drive Speed in Clinical Trial Design

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

12:00 - PLENARY KEYNOTE: Targeting Patient Centricity for Maximum Impact

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

12:30 - KEYNOTE PANEL: Driving a successful multi-stakeholder collaboration

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

13:10 - NETWORKING LUNCH - Exhibit Hall

TOPIC FOCUSED STREAM

ACCESS & COLLABORATIONS

14:00 - SESSION CHAIR OPENING REMARKS

Richard Jones, Managing Director – Patient Engagement, OPEN Health

14:05 - Utilizing Trust to Scale Patient-Centric Ecosystems

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

14:35 - Blueprint for Successful Collaboration: Pfizer’s Commitment to Patient Centricity through Partnership

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

15:05 - Listen, Listen, Listen, Using the Patient Voice in Care Collaboration.

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

Molly MacDonald, Founder, CEO, The Pink Fund

15:35 - Practical ways in putting the patient at the centre of a powerful brand

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

Ambre L. Minty, Founder, Living With Dys

16:05 - AFTERNOON NETWORKING REFRESHMENT

16:35 - Bridging the Gap Between Government, Pharmaceutical and Patients on clinical trials and research from a Patient's perspective

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

17:05 - Collaboration: Building access for CBOs)and CBAs across the health sector to improve access to clinical trials information.

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

17:35 - Patient v. Consumer: DTC Is The New Patient Engagement

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.

18:05- CHAIRPERSON’S CLOSING REMARKS

RESEARCH & DEVELOPMENT

14:00 - SESSION CHAIR OPENING REMARKS

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

14:05 - Involving patient in streamlining trial operations

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

14:35 - Case Study: “Creating and Designing Meaningful Patient-Centered Translational Research

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

15:05 - The End of Average: Personalizing Solutions for People Living with Epilepsy

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

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

15:35 - Path to Success: Benefits of Collaborating Fully with Patient Advocacy Groups in Trial Development

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

16:05 - AFTERNOON NETWORKING REFRESHMENT

16:35 - This is Not a Trend: Why Patient-Centricity Will Continue to Change the Research Paradigms of the Past

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

17:05 - The evolution of Patient Centric Drug Product Design within the Pharmaceutical Industry

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

17:35 - Patient-Generated Data: The new currency of collaboration.

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

17:40 - Purpose built decentralised clinical trial design and technologies that brings meaningful patient engagement.

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

18:05- CHAIRPERSON’S CLOSING REMARKS

Auditorium 1

08:00 - WELCOME COFFEE & REGISTRATION

08:30 - CHAIRPERSON’S OPENING REMARKS

Christine Von Raesfeld, Founder & CEO, People with Empathy

CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT

08:40 - KEYNOTE PANEL: OPENING PANEL DISCUSSION: Increasing inclusion, diversity and equity in clinical research: Breaking down barriers to access

Why diversity and inclusion in clinical trials are crucial?
Understanding critical barriers to minority and underserved patient communities participation in clinical trials
Actionable ways to improve diversity in clinical trials
What can the industry do to promote more diversity in the future?
Latest guidelines that make healthcare more inclusive

Moderator:

Christine Von Raesfeld, Founder & CEO, People with Empathy

Panellist:

Teonna Woolford, Chief Executive Officer, Sickle Cell Reproductive Health Education Directive

John Campbell, Head of Decentralized Trials, Walgreens Health

Lesli Nordstrom, Sr. Assoc. Director, Patient Centricity & Engagement, Boehringer Ingelheim

Julie Breneiser, Executive Director, Gorlin Syndrome Alliance

09:20 - PLENARY SESSION: Patient safety: Why are we so scared to talk about it?

How knowledge can reduce the fear of Pharma and ultimately save lives.
What do we really know about patient safety, both as an industry and an individual and what are
the challenges we face?
How can technology play a role in ensuring patient safety, compliance and pharmacovigilance?
How we can leverage individual and collective data to ensure proper care and Quality of life while
reducing damage, saving time and money.

Christine Von Raesfeld, Founder & CEO, People with Empathy

Kristof Vanfraechem, Founder & CEO, Data For Patients

Carolina Consuegra, Co-Founder, Marketing & Strategy Director, Science2People

09:50 - PLENARY SESSION: Industry’s commitment to patient education and access to care

Support different learning styles to ensure patients have equal access to education
Patient centricity for better health outcomes
How to determine cultural nuances and understandings to care

Paula Orandash, Patient Engagement Liaison, PTC Therapeutics

10:20 - KEYNOTE PRESENTATION: Evolution of FDA's Patient engagement initiatives*

Incorporating robust and meaningful patient engagement for a more informed decision-making
Strategies and best practices in facilitating patient recruitment and retention in clinical trials
Enhance understanding and use appropriate methods to capture patient understanding of the benefits and risk outcomes
How to best communicate patient information to support decision-making

Andrea Furia-Helms, M.P.H., Director, Patient Affairs, Office of Clinical Policy and Programs, U.S. FDA

11:00 - MORNING NETWORKING REFRESHMENTS

11:30 - SPONSORED SPOTLIGHT: From Patient Centricity to Patient Obsessed

Why measuring patient focused activity is important.
How to translate the concept of patient centricity into tangible (and intangible) results.
Sharing best practice in driving actionable change benefitting patients.

12:10 - PTSD Case Studies: Supporting Patients by Offsetting Risk of Medical PTSD

Learn how medical PTSD impacts patients ranging from newly diagnosed to long-term care
Understand the category of ways medical PTSD can develop
Discover opportunities for patients and providers to collaborate to alleviate symptoms of
medical PTSD

Emily Parks, Founder, POP!

12:40 - PLENARY SESSION: Advancing Health Equity Through People- and Patient-Centered Engagement

This presentation will highlight how companies can advance health equity through people- and
patient-centered frameworks. Learning objectives include:

Specific domains of action for addressing health equity through people and patient engagement;
Success measures of efforts to advance health equity;

Kalahn Taylor-Clark, VP & Head, Strategic Partnerships & Innovation, Myovant Sciences

13:20 - NETWORKING LUNCH

ROUND TABLE DISCUSSIONS

14:00- 14:30, 14:35 – 15:05

Divided between 2 sessions of 30 mins. (5 mins. to change table) – Attendees have 2 round table options to attend

TABLE 1: The art of decision making- lessons learnt and reflection.

Different interpretations of decision making across stakeholders
Value on patient outcomes and engagement (case studies)
Introduce the working model of decision making.

TABLE 2: Societal perception of collaboration between patients, their organisations, and other stakeholders

TABLE 3: Enabling clients to be active on their own health care

Teonna Woolford, Chief Executive Officer, Sickle Cell Reproductive Health Education Directive

15:05 - AFTERNOON NETWORKING REFRESHMENT

15:30 - KEYNOTE PANEL: The evolution of patient-centred drug development

Recognising key areas to ensure patients’ experiences, perspectives, needs, and priorities are captured and meaningfully
incorporated into drug development and evaluation.
Patient’s input to improve quality, relevance, safety and efficacy of drug development
Challenges and opportunities for patient-centric product design
The role of respective stakeholders and the way they interact, from the early steps of drug development to access in real
life?

Moderator:

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

Panelists:
Frank Rivera, President, Stronger Than Sarcoidosis

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

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

Barby Ingle, President, International Pain Foundation

Jodie Sherman Gillon, SVP Corporate Affairs & Patient Advocacy, Peptilogics

16:10 - CLOSINGPANEL DISCUSSION: Driving patient-centric healthcare: the new frontier

Understanding the drivers for innovation in pharma
Partnering with patients and placing patient well-being at the core of all initiatives
Real-world data and patient-reported outcomes presents the power and the potential to redesign
healthcare
Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
Technologies that enhance the patient-centricity in pharma

Moderator:

Kalahn Taylor-Clark, VP & Head, Strategic Partnerships & Innovation, Myovant Sciences

Panellist:

Ambre L. Minty, Founder, Living With Dys

Jason R Crites, Founder, CEO, Assurance Health Data

Matthew Zachary, CEO and Co-Founder, OffScrip Health

Christine Von Raesfeld, Founder & CEO, People with Empathy

16:50 - CHAIRPERSON’S CLOSING REMARKS

Christine Von Raesfeld, Founder & CEO, People with Empathy

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Testimonials

what people say

Thank you for a good experience with the PARADIGM Global Events… very high level, very good Organization, we overpassed our expectatives, we will be pending for another congress related to pharmaceutical and biotech… we learned a lot, and i think that the content of agenda was state of the art, thank you again.

Salvador Berrios

ERP/ CRM / Product Configurator Manager

The consistently high quality of international faculty was most impressive. It was also obvious that they were carefully chosen not only for their particular expertise but also for their ability to communicate the subject matter to clinical and non-clinical participants alike. As market access consultant for pharma clients of various sizes, I now feel much better prepared to explain the nuances & dynamics involved in bringing their products to market. In addition, I am in a much better position to intelligently advice my clients & help them set realistic expectations

Thomas Martin

Associate Vice President, VCGA - Quintiles

I was impressed with the organization of this event. I attend many conferences per year and find the organizers on site to be detached and not focus on good service to the delegates. This team was even providing weather forecast warning to ensure everyone was aware and made appropriate plans. Well Done.