Paradigm Global Events is very pleased to welcome you to our 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.
The congress focuses on “Current Trends & Strategies in Patient-centered Drug Discovery and Development”.
Patient-centricity is a vital aspect in the research and development of biopharmaceutical products, disease management, designing a treatment, clinical trial, or other health solutions. In order to create a patient-centric solution, one must truly embrace a collaborative endeavor 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-centered 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 utilizing a patient-centered 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!
Sincerely yours,
Jocelyn Raguindin
Conference Director
Paradigm Global Events
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 in the 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 the centre 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 Presidents, Heads/Chiefs, VPs, Directors, and Managers in the area of:
- Patient Engagement
- Patient Services
- Engagement Strategy
- R&D Patient Engagement
- Medical Affairs
- Commercialisation
- Marketing
- Regulatory Affairs and Policy
- Patient Support
- RWE, and Data Management
- Quality and Compliance
- Clinical Development
- Programme Management
- Supply Chain Management
- Patient Access
- Clinical Research
- Digital Accelerator
- Patient Engagement &
- Portfolio Strategy
- Patient Support Strategy & Insights
- Patient Experience
- 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…
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:
Richard Jones, Vice President European Operations. E&A, OPEN Health
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
Sophie Tsai, Sr Scientist, Global Patient-Centered Outcomes and Patient Engagement and Real-World Evidence, OPEN Health
- 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
Alan J. Balch, PhD.,CEO, National Patient Advocate Foundation
- 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
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
Alexandra Dubois, VP, Patient Engagement, The CM Group, an OPEN Health Company
Dina Matos, Executive Director, CARES Foundation
Mandy Rohrig, Associate Director, Patient Advocacy, BridgeBio
- 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
- 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
- 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:
- Matt Toresco, Advisory Board Member, A Life in a Day
Heidi Floyd, Patient Experience SME, Cancer Patient, Author, Advocate
Sumira Riaz, Managing Director – Patient Engagement Lead, OPEN Health
Ambre L. Minty, Founder, Living With Dys
TOPIC FOCUSED STREAM
ACCESS & COLLABORATIONS
Richard Jones, Managing Director – Patient Engagement, OPEN Health
- 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
- 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
- Financial Toxicity During Breast Cancer Treatment: A Qualitative Analysis to Inform Strategies for Mitigation
Molly MacDonald, Founder, CEO, The Pink Fund
- 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
- 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
Monica Dudley-Weldon, President/CEO/Founder, SYNGAP1 Foundation
- 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
- 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
- Unique patient populations
- Clearly identified and addressable pathologies
- Personalized medicine
- Role of digital / AI
Mike Davis, Head, Global Epilepsy & Rare Syndromes Organization,
UCB
- 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
- 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
- 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
- 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
- Key factors to consider in designing and operationalising
DCT - Leveraging technology and trends to engage participants
Promoting patient-centric care
Christine Von Raesfeld, Founder & CEO, People with Empathy
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
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
- 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
- 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
- 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.
Mark Doyle, Director, A Life in a Day
- 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!
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
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
- Different interpretations of decision making across stakeholders
- Value on patient outcomes and engagement (case studies)
- Introduce the working model of decision making.
Sumira Riaz, Managing Director – Patient Engagement Lead, OPEN Health
Sophie Tsai, Sr Scientist, Global Patient-Centered Outcomes, Engagement & RWE, OPEN Health
Teonna Woolford, Chief Executive Officer, Sickle Cell Reproductive Health Education Directive
- 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
- 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
Christine Von Raesfeld, Founder & CEO, People with Empathy