3rd Patient Centricity & Collaboration World Congress 2023 Americas

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Patient meets Innovation & Collaboration

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

Paradigm Global Events is proud to welcome you to the upcoming Patient Centricity and Collaboration World Congress 2023 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:

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:

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Attendees

Key Industry Expert Speakers

Meet Our Professionals

Tricia Mullins

Global Head, Patient Advocacy

Atara Biotherapeutics

Alan J. Balch ,PhD.

CEO

National Patient Advocate Foundation

Richard Jones

Vice President European Operations. E&A

Open Health Group

Wendy Erler

VP Patient Advocacy STAR & LEAP

Alexion Pharmaceuticals, Inc

Jocelyn Duff

Co-Founder/Executive Director

CureCMT4J/Talia Duff Foundation

GINGER DAVIS

President

Sickle Cell Thalassemia Patients Network

CHEYA POPE

Vice President of Corporate Affairs & Patient

Advocacy, Epizyme

KALAHN TAYLOR-CLARK, PHD, MPH

VP and Head of Strategic Partnerships and Innovation

Myovant Sciences

AMBRE MINTY

Founder, Living with Dys

Patient Leader & Advocate

BARBY INGLE

President

International Pain Foundation

LISA DECK

Founder and Director

Sisters@Heart

Frank Rivera

Co-Founder/President

Stronger Than Sarcoidosis

NEENA NEEZAR

Founder & Executive Director

Jansen's Foundation

CHRISTINE VON RAESFELD

Founder & CEO

People with Empathy

KHRYSTAL DAVIS

Founder

Texas Rare Alliance

Emily Parks

Founder

POP! Pissed Off Patients

Jill McNair, MBA

Chief Growth Officer

Center for Information Study on Clinical Research Participation (CISCRP)

Marianne Gandee

VP, Patient Solutions & Alliances

Pfizer Oncology

Tom Croce

Vice President, Global Patient Advocacy

Jazz Pharmaceuticals

Teonna Woolford

Chief Executive Officer

Sickle Cell Reproductive Health Education Directive

KRISTOF VANFRAECHEM

Founder & CEO

Data For Patients

Mark Doyle

Director

A Life in a Day

MOLLY MACDONALD

Founder, CEO

The Pink Fund

Jason R Crites

Founder & CEO

Assurance Health Data Inc.

Heidi Floyd

Patient Experience SME

Data For Cancer Patient, Author, Advocate Patients

John Daly

Head & VP, Patient Services Immunology & Enterprise Marketing

Novartis

Judith L. Campagnari

Executive Director, Head, Global Patient Insights and Solutions (GPIS)

Alexion Pharmaceuticals

Loriana Hernandez-Aldama,

2x Survivor, Advocate, Author, Educator, Founder

ArmorUp for LIFE®

Sarah Krüg

CEO

CANCER 101

Paula Orandash

Patient Engagement Liaison

PTC Therapeutics

John Campbell

Head of Decentralized Clinical Trials

Walgreens

Juliette Chen

Global Evidence and Outcomes Leader

Takeda

Jodie Gillon

SVP Corporate Affairs & Patient Advocacy

Peptilogics

Andrea Furia-Helms, MPH

Director, Patient Affairs

FDA

Mike Davis

Head of Global Epilepsy

UCB

Maimah Karmo

Founder/CEO

Tigerlily Foundation

Charlie Barr

Chief Medical Officer,

Adaptic Health

Keri Yale

Head, Patient Affairs & Engagement

Boehringer Ingelheim Pharmaceuticals

Craig Martin

CEO

Global Genes

Monica Dudley-Weldon

President/CEO/Founder

SYNGAP1 Foundation

Brian Lehman

Director, Patient Advocacy and Strategic Alliances

Sandoz Inc.

Deedar Singh

Director, Patient Engagement and Strategic Alliances

Sandoz Inc.

Dina Matos

Executive Director

CARES Foundation

Nélio Drumond

Associate Director, Lead Process Scientist

Takeda Pharmaceutical

Alexandra Dubois

Vice President, Patient Engagement

The CM Group, An OPEN Health Company

Sophie Tsai

Senior Scientist, Global Patient-Centered Outcomes and Patient Engagement and Real-World Evidence

OPEN Health

Sumira Riaz

Managing Director - - Patient Engagement Lead

OPEN Health

Coming Soon

SVP

Coming Soon!

Schedule

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

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

CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT

  • 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

Panellist:

Tricia Mullins, Global Head, Patient Advocacy, Atara Biotherapeutics

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

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

  • 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

  • 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

  • What are logistical and financial challenges which increasingly impact all clinical trial stakeholders
  • Tailored approaches to travel services for the patients
  • Innovative reimbursement programmes
  • How to ensure patient safety and reliability

 

  • The importance of real-world patient data democratization
  • Common challenges in clinical data that hinders clinical trials
  • Strategies in overcoming these challenges
  • How to seamlessly integrate real-world data from a variety of sources?
  • 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

  • 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?

Panelists:
Juliette Chen, Global Evidence and Outcomes Leader, Takeda
Frank Rivera, President, Stronger Than Sarcoidosis

  • 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! Pissed Off Patients

  • Putting the patient first achieves the best experience and outcome for that person and their family
  • Improve communication from staff shift-changes in a hospital to getting the patient discharged faster
  • Setting expectations soon
  • Updating goals and outcomes; timely

Barby Ingle, President, International Pain Foundation

  • COVID-19 pandemic has highlighted the need for patient-centricity, understanding the drivers for innovation in pharma
  • Partnering with patients and placing patient well-being at the core of all initiatives
  • Shifting towards disease-oriented to patient-centric
  • Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
  • Technologies that enhance the patient-centricity in pharma

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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.
Adriana E. Manzi
PhD, Managing Director, Atheln, Inc

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