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.

Facilitate Live is proud to welcome you to the upcoming 6th 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.

Patient-centricity is a vital aspect in the research and development of biopharmaceutical products, disease management, designing a treatment, clinical trial or other health solution. In order to create a patient centric solution, one must truly embrace a collaborative endeavour with the patient and their caregivers. Establishing a patient-centric solution involves getting feedback from real patients and their loved ones, and making decisions based on their medical conditions, experiences, needs, perspectives and priorities.

In the current climate where the patients are increasingly becoming more empowered, life sciences and pharmaceutical companies should confront the status quo and welcome the opportunities to embrace a wide range of patient-centred perspectives presented by an emerging ecosystem. While the technology-driven world poses challenges, it also holds opportunities to build a positive patient experience by coordinating the health ecosystem to centre on the patient. Reevaluating how it develops and delivers drugs to improve experiences and outcomes and also to continuously adapt and transform to meet the evolving needs of patients.

The industry has come a long way with utilising a patient-centred approach. The concept has gone from a buzzword to a potential trend, to a perceivable goal. Whilst the industry has advanced in recent years, the evolving healthcare model and ecosystem brought forward by advances in technology and more involved, empowered patients, means true patient centricity is a continuing quest and a compelling commitment.

We look forward to meeting you at the Congress!

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

2023 / 2024 Speaking Faculty 

Tricia Mullins

Global Head, Patient Advocacy

Atara Biotherapeutics

Alan J. Balch ,PhD.

CEO

National Patient Advocate Foundation

GINGER DAVIS

President

Sickle Cell Thalassemia Patients Network

Wendy Erler

VP Patient Advocacy STAR & LEAP

Alexion Pharmaceuticals, Inc

Jocelyn Duff

Co-Founder/Executive Director

CureCMT4J/Talia Duff Foundation

Judith L. Campagnari

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

Alexion Pharmaceuticals

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

Available Shortly

Coming Soon

Available Shortly

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

Lesli Nordstrom

Sr. Associate Director, Patient Centricity & Engagement

Boehringer Ingelheim

Available Shortly

Coming soon

Available Shortly

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

Available Shortly

Coming Soon

Available Shortly

Available Shortly

Coming Soon

Available shortly

Mandy Rohrig

Associate Director of Patient Advocacy

BridgeBio Gene Therapy

Julie Breneiser

Executive Director

Gorlin Syndrome Alliance

Matthew Zachary

CEO and Co-Founder

OffScrip Health

Senior Representative

Available Shortly

Available Shortly

Senior Representative

Available Shortly

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:

Panelist: 

  • 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.
  • 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.
  • 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 learning to the evolving process
  • Supplying the audience with guiding principles for future partnerships
  • 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
  • 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
 

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

 

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

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
  • 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.
  • 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.
  • 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
  • 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

 

  • 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.
 

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
  • Equity and Inclusion of Rare Disease Patients – A Must on Many Levels
  • What can the industry do to promote more diversity in the future?
  • Latest guidelines that make healthcare more inclusive

Moderator:


Panelists:

  • 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.
  • Patient engagement activities incorporating robust and meaningful patient engagement experiences to inform
    regulatory work
    Considerations in patient engagement
    Resources to help engage with FDA
  • 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
  • The importance of data democratization
  • Common challenges in clinical data review that hinders clinical trials
  • Strategies in overcoming these challenges
  • How to seamlessly integrate data from a variety of sources?
  • How to improve safety review efficiencies and reduce the timeline to critical studies?
  • Understanding complexities and addressing challenges faced by the industry in setting up end-to end supply chain for cell and gene therapies
  • Best practices and lessons learned that guarantees effective manufacturing and delivery of CGTs to the patients who needs them the most
  • Robust technologies and innovative platforms that connects therapies with patients both in clinical and commercial scale

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

Moderator:

Panelists:

  • 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:


Panellist:

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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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