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Conference Agenda

Day 1 – October 23rd. Start time: 8:30am. Finish time: 5:30pm.
Day 2 – October 24th. Start time: 8:40am. Finish time: 3:30pm.

Im-patient Conference – where patients are in charge!#impatientconf
09:00 - 09:30
True partners don’t ask for blind faith. Build trust with patients through a transparent, open alliance
  • Educate to engage – share your process and challenges with the patient to help gain buy-in and build trust
  • Partner with the right patients at the right time for the most productive relationship
  • Be transparent about financial aid given to advocacy groups to avoid any misconceptions
09:00 - 09:30
Beyond the diagnosis and drugs. A day in the life of a patient

Put yourself in a patient’s shoes for a day to experience their pain points and the relief your products can provide

  • See the biggest pain points in a patient’s day and realign your product design accordingly
  • Hear solutions to problems that hinder adherence and reduce the effectiveness of your treatments
09:00 - 09:30
Panel: Navigate the current political landscape of healthcare with your patient partners
  • Create an alliance that continues across merely one Presidency or Congress
  • Lobby for better access and outcomes with your patient partners
  • Is ‘Right to Try’ the right move?
09:00 - 09:30
Interactive session: Co-author a blueprint for patient engagement across your drug’s lifecycle

Take part in our roundtable session to discuss where patient engagement currently stands, where it needs to improve and how we plan to implement change. Choose to sit in the Clinical, Access or Uptake/Adherence sections where together you’ll work to discuss the key areas and solve the issues around patient engagement with other stakeholders. Take advantage of the opportunity to network and learn from others outside your company, with different experiences and points of view. Bring an open mind and a willingness to participate in this must-attend session.  

Together, we can create the blueprint for future patient engagement across the drug lifecycle.

Speakers to be announced.

Keynote
08:30 - 09:00
Crossing the patient engagement adoption chasm
  • Understand where patient engagement sits on the adoption curve in your company
  • Identify tactics to make patient engagement in drug development the rule, not the exception
  • Recognize how the implementation of FDA actions is pushing patient engagement into the early majority

National Health Council Marc Boutin Chief Executive Officer National Health Council

08:30 - 09:00
Help patients help you by integrating patient insights and technology to transform patient value
  • Co-design with patients from day 1 to create meaningful patient endpoints
  • Learn from your challenges to create a better overall product for patients
  • Listen to patients to comprehend unmet needs from their experience

UCB Erik Janssen Vice President Patient Relevant Innovative Solutions Mission Neurology UCB

08:30 - 09:00
PANEL: Perform your research with patients, not just for patients
  • Base your research priorities on patient priorities
  • Create metrics that measure the impact that’s of the greatest concern to the patient
  • Constantly engage with patients throughout the trial process for the best co-created solutions

Merck Jan Nissen Vice President Patient Innovation and Engagement Merck

Janssen Katie Mazuk Senior Director, Global Head Investigator and Patient Engagement Janssen

Company_Name TJ Sharpe Patient Advocate

FDA Samir Shaikh Deputy Director, Patient Affairs FDA

08:30 - 09:00
Case Study: Novartis’ patient app that is breaking physical constraints through virtual interaction
  • Comprehend how this approach minimizes the impact on the patient’s life
  • Understand how data can still be collected and analysed without site visits
  • Identify how patient involvement in design led to the best possible product

Novartis Mohanad Fors Global Head Digital Innovation Lab - Global Drug Development Novartis

08:30 - 09:00
The evolution of the patient: from ‘data contributors’ to ‘driving forces’
  • See how the evolution of the patient is transforming ‘business as usual’ in pharma
  • Build your new model with the principle ‘nothing about them without them’
  • Case study: the world’s first patient-led research in dermatology

LEO Pharma Camilla Krogh Lauritzen Chief Patient Officer, Rare Diseases LEO Pharma

International Alliance of Dermatology Patient Organizations Christine Janus Chief Executive Officer International Alliance of Dermatology Patient Organizations

08:30 - 09:00
Discuss the negative impact and financial burden that Co-pay Accumulators on patients of those with no other treatment option
  • Hear about the impact of Co-pay Accumulator Programs to patient’s lives who have no alternative
  • See the PBM perspective to understand their decision-making process
  • Ally with Patient Advocacy groups in the fight against co-pay accumulators

CSL Behring Dina Inverso US Strategy Leader- Reimbursement and Patient Engagement CSL Behring

Patient Advocate Pete Dyson Patient Advocate

Patient-led roundtables
08:30 - 09:00

Join our disease experience experts for an interactive discussion around the problems we still face with engagement in healthcare, and the solutions we can develop together. Leaders include:

Patient Power Esther Schorr Co-Founder Patient Power

Heidi Floyd Heidi Floyd Breast Cancer Advocate


Teen Cancer America Simon Davies Executive Director Teen Cancer America

Melissa Mehaffey Melissa Mehaffey Patient Advocate


National Hemophilia Foundation Michelle Rice Senior Vice President External Affairs National Hemophilia Foundation

TJ Sharpe TJ Sharpe Patient Advocate


Cancer 101 Sarah Krug Patient Advocate Cancer 101

Pete Dyson Pete Dyson Patient Advocate


Sickle Cell Disease Community Forum Dominique Goodson Patient Advocate Sickle Cell Disease Community Forum

The Pink Fund Molly MacDonald Founder, CEO The Pink Fund


Erin Moriarty Erin Moriarty Rare Disease Carer

International Alliance of Dermatology Patient Organizations Christine Janus Chief Executive Officer International Alliance of Dermatology Patient Organizations


Lou Lanza Lou Lanza Lou Lanza

Society for Women's Health Research Amy Miller President and Chief Executive Officer Society for Women's Health Research


Work With Patients, Not for Patients
Digital Disruption of Trial Design
10:30 - 11:00
Industry and Patient Advocacy Groups: Doing what is best for Patients, Together
  • Compliance and ethics are key to positive relationships
  • The benefit to Patients must be at the heart of all interactions
  • It is critical for industry to get insights to succeed in addressing the needs of patients and caregivers

Merck Michelle Vichnin Global Lead, Patient Advocacy and Strategic Alliances Merck

Case Study: Janssen’s patient voice initiative
  • See how patient insights have affected real trial design changes
  • Why even the voice of one patient has the influence to change a trial for the better of all
  • How the Patient Voice initiative has led to new retention strategies

Janssen Maura Snyder Director, Patient Engagement Strategy Janssen

10:30 - 11:00
Patient engagement, a new paradigm for FDA Approval
  • See how patient engagement enhances your product approval
  • Determine the value of PRO endpoints in FDA approval
  • Build the case you can take directly to other teams on why engagement is critical in submissions

FDA Francis Kalush Health Programs Coordinator, Professional Affairs and Stakeholder Engagement (PASE), CDER FDA

Case Study: When and how to engage with patients
  • Start early – be proactive with your patient engagement strategy to iron out issues early
  • See what good could look like when patient engagement is actioned effectively
  • Collaborate internally to get the best results for patients

Dermira Trisha Devlin Director, Patient Advocacy Dermira

10:30 - 11:00
Panel: Change your company’s mindset: Move from sponsorship to partnership
  • Look beyond traditional partnerships of yesterday and today to collaborate with the disruptors of today
  • Know your partners through capacity building efforts to help deepen overall partnership collaboration on both sides
  • Leverage your patient advocacy role to serve as the internal champion for partners and patients

Ipsen Debra McGarity Director Patient Advocacy Ipsen

Soft Bones Debora Fowler Founder and President Soft Bones

Support patient advocates to align pricing with a greater balance of access and affordability
  • Empower patient advocates to fight for sustainable costs and access to life saving care
  • Move patients from last to first consideration in the value chain of drug pricing
  • Provide clarity around drug pricing and partner with patients to reshape this broken system

Siobhan Cavanaugh Patient Advocate, Former Head of Patient Advocacy Mylan

10:30 - 11:00
Improve Patient Outcomes and Clinical Effectiveness through Collaboration
  • Overcome obstacles to patient access by communicating individual needs
  • Demonstrate cost quality with a balance of cost effectiveness and optimal patient outcomes
  • Reshape the healthcare landscape with collaborative programs between payers, patients and providers

National Hemophilia Foundation Michelle Rice Senior Vice President External Affairs National Hemophilia Foundation

Patient ownership over their own health records
  • Ensure patients can see their own data as easily as aggregated data
  • Explore the entrepreneurial tech solutions designed to help patients protect their data
  • Place the patient in control of how their data is shared and used

Pfizer Craig Lipset Head of Clinical Innovation Pfizer

Informed Patients Are Powerful Partners
Co-Create Trials With Patients
10:30 - 11:00
Health Literacy as a tool for patient empowerment
  • Understand the role of health literacy to maximize the clarity of patient communications
  • Test with patients across a range of health literacy levels to drive understanding and impact
  • Case study: Use patient feedback and health literacy to improve patient labeling

Merck Laurie Myers Director Global Health Literacy Merck

Design-Thinking to Improve the Patient Experience
  • Learn how design-thinking principles and practices will help identify the pain points patients actually want solved
  • Explore methods to connect and work with patients, and how to treat them equitably in the process
  • Understand how working with patients helps to build better patient-centered solutions faster

Savvy Cooperative Jen Horonjeff Founder and Patient Advocate Savvy Cooperative

10:30 - 11:00
Case Study Fox Insight: People with Parkinson’s disease and researchers working together toward treatment breakthroughs
  • Fox Insight snapshot: an online, longitudinal study designed to capture information directly from thousands of patients
  • Facilitate rapid data collection and long-term participation through effective patient engagement strategies
  • What’s in it for the patient? How Fox Insight is affecting change for participants

The Michael J. Fox Foundation for Parkinson's Research Lauren Bataille Senior Associate Director, Research Partnerships, The Michael J. Fox Foundation for Parkinson's Research

Case Study: How patient input revamped Janssen’s informed consent
  • Why e-Consent adds value to the Informed Consent process
  • How Janssen engaged patients to co-create the Informed Consent Form and eConsent.

Janssen Cassandra Smith Associate Director, Investigator & Patient Engagement Janssen

10:30 - 11:00
Challenges as Stepping Stones to the Path Forward
  • Learn from missteps in collaboration to foster more meaningful connections across healthcare
  • “Dear Siena”. Hear real-world issues in partnerships and how the community provided methods to resolve them
  • Underline key principles to foster collaboration in healthcare through problem-based learning

Company_Name Sarah Krüg Patient Advocate Founder, Health Collaboratory CEO, CANCER101

Understand patient journeys when designing clinical trials and patient recruitment strategies
  • Harness patient wants and needs to be co-creators in trial design and outreach strategies
  • Embed clinical research into patient treatment paradigms rather than fitting patients into your protocol
  • The days of check box activities are over: strategy must take into account the needs of specific patient populations

Vertex Kelly McKee Head of Patient Recruitment, Rare Diseases Vertex

10:30 - 11:00
Case Study: Co-creation of patient services in a diverse diabetes population to enhance engagement
  • Every patient is different – tailor your service to suit different population needs
  • Envisage the future of pharma-patient relationships with a ‘drugs plus’ service that goes beyond the pill
  • Ensure your service is co-designed with patients to create the most effective patient service

Sanofi Lisa Egbuonu-Davis Vice President, Global Patient Centered Outcomes and Solutions Sanofi

Panel: Clear the endpoint bottleneck to realize the full potential of digital trial design
  • The limitations of current endpoints that have outlived their time
  • Systematic strategies for the development of novel, patient-centric endpoints
  • How pharma can update their outdated endpoints to enable more forward thinking clinical trials

Eli Lilly Joseph Kim Senior Advisor, Patient Experience and Design Innovation Eli Lilly

The Michael J. Fox Foundation for Parkinson's Research Lauren Bataille Senior Associate Director, Research Partnerships The Michael J. Fox Foundation for Parkinson's Research

Society for Women's Health Research Amy Miller President and Chief Executive Officer Society for Women's Health Research

10:30 - 11:00
The Internal Advocate – how EMD Serono internalized the patient voice
  • Build the best advocacy team led by former advocacy professionals
  • Create confidence in your mission as early as possible, both internally and externally
  • Design initiatives that patient advocacy groups want by listening to their needs

EMD Serono Jasmine Greenamyer Senior Director, Patient Advocacy & Strategic Partnerships EMD Serono

Im-patient Conference – where patients are in charge!#impatientconf
09:00 - 09:30
True partners don’t ask for blind faith. Build trust with patients through a transparent, open alliance
  • Educate to engage – share your process and challenges with the patient to help gain buy-in and build trust
  • Partner with the right patients at the right time for the most productive relationship
  • Be transparent about financial aid given to advocacy groups to avoid any misconceptions
09:00 - 09:30
Beyond the diagnosis and drugs. A day in the life of a patient

Put yourself in a patient’s shoes for a day to experience their pain points and the relief your products can provide

  • See the biggest pain points in a patient’s day and realign your product design accordingly
  • Hear solutions to problems that hinder adherence and reduce the effectiveness of your treatments
09:00 - 09:30
Panel: Navigate the current political landscape of healthcare with your patient partners
  • Create an alliance that continues across merely one Presidency or Congress
  • Lobby for better access and outcomes with your patient partners
  • Is ‘Right to Try’ the right move?
09:00 - 09:30
Interactive session: Co-author a blueprint for patient engagement across your drug’s lifecycle

Take part in our roundtable session to discuss where patient engagement currently stands, where it needs to improve and how we plan to implement change. Choose to sit in the Clinical, Access or Uptake/Adherence sections where together you’ll work to discuss the key areas and solve the issues around patient engagement with other stakeholders. Take advantage of the opportunity to network and learn from others outside your company, with different experiences and points of view. Bring an open mind and a willingness to participate in this must-attend session.  

Together, we can create the blueprint for future patient engagement across the drug lifecycle.

Speakers to be announced.

Download your brochure for 2018

Complete speaker line-up • Program for all tracks & sessions • Audience breakdown