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2018 Agenda

  • 7:45 am

  • Registration, Coffee & Tea

  • 8:30 am

  • Co-Chair’s Opening Remarks: The Evolution of Patients as Partners and What’s Next?

    Schneider_Roslyn
    Roslyn Schneider, MD

    Global Patient Affairs Lead, Pfizer Medical


    Suzanne Schrandt, JD

    Director, Patient Engagement, Arthritis Foundation

  • 8:45 am

  • Patient Fireside Chat

    Cancer survivor Stefanie Joho was diagnosed in 2013 with colon cancer. At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure Stefanie, her oncologist sent her home to die. This was not acceptable and Stefanie’s sister helped her find an immunotherapy trial that ultimately saved her life. Stefanie joins us to talk about her immunotherapy journey, what she has learned and how she now advocates to help others shape their thinking on become their own patient advocate and an active participant in helping save their own lives.

    Joho_Stefanie
    Stefanie Joho

    Cancer Survivor, Advocate and Consultant

  • 9:05 am

  • Overview of Key Results and implications of the CISCRP 2017 Perceptions and Insights Study

    In this session, Ken Getz, Director of Sponsored Research Programs Tufts CSDD and founder of CISCRP will share the results and implications of the 2017 Perceptions & Insights study.  The study gathered responses from nearly 12,500 people world wide.  Trends and insights into public and study volunteer attitudes, perceptions and experiences with clinical research will be reviewed with a look at a number of subgroup differences including by geographic region, age and disease condition. The 2017 Perceptions & Insights study also introduces a number of new areas of inquiry including the use and perceived value of patient engagement initiatives and overall public and patient receptivity to the integration of clinical research into clinical care.

    Getz_Ken-2018
    Ken Getz, MBA

    Director of Sponsored Research Programs / Chair, Tufts CSDD / CISCRP

  • 9:35 am

  • A New Innovative Approach to Integrate Patient Preferences into the Statistical Design for Clinical Trials: A Collaborative Case Study

    For chronic debilitating and terminal illnesses with no effective treatments, the standard statistical threshold for determining therapeutic effectiveness in clinical trials may be too conservative and may not reflect patients’ perspectives on the potential benefits and risks of a therapy. This session will present a novel method for incorporating patient preference information as an explicit means to set significance levels in clinical trial designs. This project, in collaboration with MIT, MDIC, the Michael J Fox Foundation and RTI Health Solutions, focuses on Parkinson’s disease but may be generalizable to other disease areas. The primary outcome of the project is a method to determine an appropriate p-value threshold and trial size using patient input. This method helps remove barriers to access by giving patients a pathway to breakthrough, lifesaving technologies based on their risk tolerance and the resulting potential for reduced clinical trial size. This session will present some of the results of the study, including key attributes identified as important to patients, how the patient preference information could be used to design a patient-centered clinical trial, and lessons learned from this unique collaborative partnership between patients, regulators and the medical devices industry.

    Moderator:


    Stephanie Christopher

    MA Program Director, Medical Device Innovation Consortium (MDIC)

    Panelists:

    Heather Benz
    Heather Benz
    Medical Device Staff Fellow, Center for Devices and Radiological Health (CDRH), FDA

    Lauren McLaughlin
    Associate Director, Research Partnerships, The Michael J Fox Foundation for Parkinson’s Research

    Anindita Annie Saha
    Anindita (Annie) Saha
    Director, External Expertise and Partnerships, Center for Devices and Radiological Health (CDRH), FDA

    Margaret Sheehan
    Patient and Advocate, Michael J Fox Foundation for Parkinson’s Research Patient Council
  • 10:05 am

  • Connections for Patient Care Pathway in Clinical Trials

    This session will address the patient care pathway in clinical trials and identify resources, tools and technologies that can help support patient engagement initiatives.

    PatientsUS

  • 10:20 am

  • Networking Break

  • 11:00 am
    - 12:15 pm

  • Large Pharma Case Studies: Applying Patient Engagement Initiatives and Demonstrating Impact

    Choice of six case studies.

    • Track A

    • 11:00 am

      How Tesaro is Integrating the Patient in the Clinical Development Process

      In this session, Beth Zaharoff, Director, Patient Focused Clinical Trial Engagement of Tesaro will walk the audience through how they integrated patient input throughout multiple stages of the development process.

      • What patient focus means to TESARO and why/how we decided to jump in the deep end
      • How we gained internal support and tips for doing so
      • TESARO focus groups – what we learned from the experts
      • How TESARO solicited patient input to design a trial that is both relevant and scientifically rigorous
      • Patient input into clinical trial design = consumer input in the goods and services industry
      • How Tesaro is working to eliminate some of the burdens inherent in clinical trial participation

      Zaharoff_Beth
      Beth Zaharoff

      Director, Patient Focused Clinical Trial Engagement, Tesaro


       

    • 11:30 am

      How Janssen is Creating Strategic Collaborations that are Driving Patient Centered Trials

      An enormous amount of attention and resources have been dedicated to understanding what patient centricity means and how to truly engage patients and put them at the center of all R&D. It takes a village. In this case study, here how leading pharmas are collaborating to achieve patient-centered trials.

      Capperella_Katherine
      Katherine Capperella

      Global Patient Engagement Leader, Janssen Pharmaceuticals

      Bennett-Levitan
      Bennett Levitan, MD, PhD

      Senior Director, Benefit-risk Assessment, Department of Epidemiology, Janssen R&D, LLC


       

    • 12:00 pm

      How Takeda Used One or More of the Various Patient Engagement Frameworks Internally to Build Support and Cultural Shift for Patient Engagement

      There are many frameworks and models that exist from various organizations on aspects of patient engagement and may be challenging to navigate through when applying to your own initiatives. In this session, Takeda will walk the audience through how they used multiple patient engagement frameworks to create an internal R&D Patient Engagement Guide tailored for their drug development teams from discovery through marketed products. The audience will learn how the guide has help build support and a cultural shift for Takeda’s internal patient engagement initiatives and how it has helped each team at various phases of development with the following:

      • Identifying what the patient engagement activities are at the different phases of development
        • How does patient engagement apply to the work I am doing?
        • Identifying who is relevant to talk to, how to go about it
        • What is the impact?
      • Mapping the patient advocacy landscape
        • Identifying what all the ways are that teams can learn from patients
        • What you need to understand about patient advocacy groups before engaging with them
        • How to initiate relationships with patient advocacy
        • Understanding where patients fit in your development, where online communities fit in, etc
      • Implementing change and streamlining patient engagement initiatives internally
        • Identifying each team’s key patient engagement issues
        • Training teams on creating and documenting patient engagement plans
        • Demonstrating how to integrate patient engagement plans with overall development plans
        • Helping initiate activities

      Meyer Carol
      Carol Meyer

      R&D Patient Engagement Lead, Takeda Pharmaceuticals

    • Track B

    • 11:00 am

      How an Entire Large Pharma Team Incorporates Patients at Every Stage of Development

      This session will feature a large pharma team case study where members of the clinical development and patient engagement groups demonstrate how at each phase, a patient was involved in helping research and plan, the impact that was made by doing this and the method behind implementing those initiatives as a result of patient involvement.

      Yates_Stephen
      Stephen Yates

      Global Clinical Development & Medical Affairs, UCB


       

    • 11:30 am

      Translating Patient Insight and Patient Experience Internally into Clinical Development Deliverables

      This session will look at applying quality systems framework (structure, processes, outcomes) to patient engagement initiatives to help create clinical development deliverables that meet industry goals while aligning with patients needs. Key focus:

      • Reviewing the framework
        • Structure: Designing appropriate protocols that align with patients needs
        • Processes: What process needs to be in place to help articulate what patients need and translate those needs into elements of a protocol?
        • Outcomes: What are the outcomes based on incorporating the patient insight into this framework?
      • How do you have those internal discussions so you can effectively translate a patient need into helping do something different in your program/protocol? What are some examples?
      • What does the internal communication plan look like to do this?


      Mary Stober Murray

      Associate Director, Diversity and Patient Engagement, R&D, Bristol-Myers Squibb


       

    • 12:00 pm

      How GSK Implemented Pivotal End-to-End Engagement Initiatives at Different Stages of Development

      In this session, Marilyn Metcalf, PhD, Patient Engagement Lead, GlaxoSmithKline, will discuss the pilot program on end-to-end engagement that is currently underway as part of GSK’s enterprise-wide Patients in Partnership program. Partnership at key decision points provides valuable guidance to meet patients’ needs. Dr Metcalf will walk the audience through some examples of the engagement initiatives at several stages of their development, supported by:

      • creation of a framework and toolkit that builds on existing infrastructure
      • networks of champions and project leads
      • project planning
      • emerging best practices being shared throughout the organization

      Metcalf_Marilyn-2018
      Marilyn Metcalf, PhD

      Patient Engagement Lead, GlaxoSmithKline

  • 12:25 pm

  • Lunch

  • 1:15 pm

  • Afternoon Breakout Choices

    Attendees have the opportunity move freely between the two tracks to attend sessions of interest that will help with their own patient engagement initiatives.

    • Track A: Treatment Decisions, Early Development, Driving R&D

    • 1:15 pm

      Patient Perspectives: What is Your Decision Making Process When it Comes to Your Treatment?

      According to industry, there is still a need to better understand the decision making process a patient goes through when considering their treatment options, including clinical trials. Understanding these dynamics will help industry design appropriate initiatives that help meet its goals while aligning with patient’s needs. In this session, patients will lead a discussion that addresses:

      • What patients consider when determining to participate/not participate in a clinical trial?
      • What is the decision making process for patients?
      • How can pharma help support/provide tools that will help patients while deciding which treatment pathway they choose?
      • How can advocacy groups support this and how do they help inform patients?

      Moderator:

      Jen Horonjeff, PhD

      Patient and Founder, Savvy Cooperative

      Panelists:

      Michael Mittelman
      Michael Mittelman

      VP, Patient Advocacy & Strategic Partnerships / Product Development & Capability Manager, American Living Organ Donor Fund / Independence Blue Cross

      Gray Valbrun_Tanika
      Tanika Gray Valbrun

      Patient and Founder, The White Dress Project


      Marie Recine
      Patient, Advocate and Medical Writer


       

    • 1:45 pm

      Involving Patients In Research and Early Clinical Development Phases

      Meeting with patients with unmet needs can help prioritize different indications. This session will discuss how industry and patients are involved in early R&D.

      • How do you involve patients to decide on indications/looking at unmet need and even formulation, dosing, etc?
      • How do you engage patients before Phase I or Phase II?
      • How do we need to work with patients in each of the clinical trial operation functions?

      Moderator:


      Jodie Gillon
      Global Medical Lead, Patient Engagement Rare Diseases, Pfizer Innovative Health

      Panelists:

      Jenny Ahlstrom
      Jenny Ahlstrom

      Myeloma survivor and Co-founder, CrowdCare Foundation

      jack aiello
      Jack Aiello
      Myeloma Patient, Advocate and Board Member, Patient Empowerment Network

      Yates_Stephen
      Stephen Yates

      Global Clinical Development & Medical Affairs, UCB

      Zaharoff_Beth
      Beth Zaharoff

      Director, Patient Focused Clinical Trial Engagement, Tesaro


       

    • 2:15 pm

      How Patient Research Advocates are Driving R&D: A Patient Case Study

      In this session, patient and research advocate, Geraldine Blavat will walk the audience through 10 steps on how patient input is integrated through the entire clinical development continuum including:

      1. Developing the Study Concept
      2. Secure Funding
      3. Preparing the Study Protocol
      4. Creating Study Procedure
      5. Implementing the Study
      6. Monitoring the Study
      7. Analyzing the Data and Interpreting Results
      8. Disseminating Study Information
      9. FDA Review and Approval
      10. Post Approval Studies


      Geraldine Blavat

      Parkinson’s Foundation Research Advocate

      Schroeder_Karlin
      Karlin Schroeder

      Director, Community Engagement, Parkinson’s Foundation

    • Track B: Data and Metrics

    • 1:15 pm

      Engaging Patients By Giving Them Their Data

      • What information and data do patients want during a clinical trial?
      • What initiatives is pharma currently doing to support this?
      • What impact will it have if patients have access to their data?

      Moderator:

      David Leventhal
      David Leventhal, MBA

      Director of Clinical Innovation, Pfizer, Inc

      Panelists:

      Jenny Ahlstrom
      Jenny Ahlstrom

      Myeloma survivor and Co-founder, CrowdCare Foundation


      Kristina Figueroa, MSPH
      Patient and Advocate


      Cindy Geoghehan

      Cancer Survivor, Patient Advocate & Team Lead, CTTI’s Mobile Clinical Trials Stakeholder Perceptions Project


      Thérèse Johnsen

      Associate Director, Patient Engagement Management, Novartis


       

    • 1:45 pm

      Town Hall Meeting on Patient Engagement Metrics and Value

      This portion of the program will be a town hall style session that addresses the following questions:

      • What are companies measuring? What metrics will be used to measure success?
      • What do these measurements reveal and what can we do about it?
      • Are these metrics different depending on the stakeholder? Why and how to we close that gap?
      • What and how to benchmark and determine market value?
      • How do we determine Return on Engagement? What does that really mean?
      • How are we moving forward in a team approach- regulators, etc – on policies, guidance?
      • What are some of the centralized set of information about patient involvement?

      Moderator:

      Bennett-Levitan
      Bennett Levitan, MD, PhD

      Senior Director, Benefit-risk Assessment, Department of Epidemiology, Janssen R&D, LLC

      Panelists:

      Getz_Ken-2018
      Ken Getz, MBA

      Director of Sponsored Research Programs / Chair, Tufts CSDD / CISCRP

      Jen Mills
      Jen Mills, PhD
      Director, Patient Engagement and Novel Patient-Focused PartnershipsGenentech


       

    • 2:15 pm

      Combining Valid Statistical Technology with Crowdsourcing for Better Insights

      Jean McCoy
      Jean McCoy

      SVP, Partnerships, Health Perspectives Group LLC

      JoAnne Jensen
      Jo Anne Jensen

      SVP, Insights and Technology, Health Perspectives Group LLC

      Meyer Carol
      Carol Meyer

      R&D Patient Engagement Lead, Takeda Pharmaceuticals

       
  • 2:45 pm

  • Networking Break

  • 3:25 pm

  • Panel: Engaging with Communities to Educate and Enroll Diverse Populations

    This multi-stakeholder panel will discuss the complexities of diversity and what actions we can take to make sure that trial enrollment is reflective of the demographics of the populations.

    Key focus areas include:

    • What are sponsors doing currently doing to include diverse populations in trials?
    • What are some examples of how industry has approached diversity internally such as developing partnerships, education and awareness to identify and address the barriers of diversity?
    • How does industry assess the capacity of the sites they are working with and the ability to recruit diverse participants?
    • Why potential participants that are aware/not aware are not participating. What are their concerns of participation?
    • What are the clinical site teams challenges/issues on recruiting diverse participants? How do you incentivize sites to engage in diverse communities?
    • How has advocacy helped with outreach, awareness and recruitment of diverse populations for clinical trials?
    • Additional examples of what have been done that has worked and is scalable.

    Moderator:

    Luther Clark
    Luther Clark, MD

    Global Director, Scientific Medical and Patient Perspective, Office of the Chief Patient Officer, Merck

    Panelists:


    Diane Gross

    National Director, Advocacy and Programs, Lupus Research Alliance


    Jen Horonjeff, PhD

    Patient and Founder, Savvy Cooperative

    Yolanda Johnson
    Yolanda Johnson-Moton, MBA

    Director of External Relations, Medicines Development Unit, Eli Lilly and Company


    Christine Pierre

    President, The Society for Clinical Research Sites

  • 4:10 pm

  • What Do Patients Expect from Sites and How Are We Ensuring We Meet Those Expectations?

    This multi-stakeholder session will discuss what we can be doing better at the site level to engage patients. Key focus areas include:

    • Patient Perspective: 
      • Patient experiences, challenges and expectations in clinical research when working with sites 
    • CRO/Pharma Perspective: 
      • What are you doing to ensure your sites are meeting patient expectations such as providing humanistic qualities, communicating with patients throughout the study, providing study data after the trial, etc?
      • How do you evaluate a site?
      • How are you going to move forward to ensure this occurs at sites? 

    Moderated by:


    Christine Pierre

    President, The Society for Clinical Research Sites

    Panelists:


    Kristina Figueroa, MSPH
    Patient and Advocate

    Gretchen Goller
    Gretchen Goller

    Head of Patient Recruitment Services, ICON


    Graham Wylie

    CEO, Medical Research Network

  • 4:45 pm

  • When Average Isn’t Enough: Harnessing The Expertise Of Patient Opinion Leaders

    As pharma struggles to turn the concept of patient engagement into more than just a feel-good catchphrase, there is a growing trend to partner with patients in a more meaningful way to impact development throughout the drug life cycle. What if you could create a Patient Opinion Leader (POL) Advisory Panel – a collaborative group of patients and caregivers possessing not only the knowledge and first-hand experience of living with their health condition, but also having expertise in a variety of subjects that intersect nicely with pharma to result in more valuable insights than the average patient could provide? Their collective experience in patient advocacy, pharmaceutical marketing, clinical trials and patient assistance programs among other areas of expertise converge to create the quintessential panel of POLs who can read a protocol without fear, perform UAT/UX testing and give actionable feedback and collaborate in a highly effective and broadly impactful way. In this session, attendees will learn:

    • How set up, select, and leverage the right POLs and employ a long-term advisory board to significantly impact the entire drug development lifecycle
    • Utilize an emerging model for an in-depth vetting process to develop a robust, sustainable, long-term relationship with key POLs to gain their unique combination of perspectives and expertise to support the design and development of a variety of initiatives across the product lifecycle


    Abbe Steel, MSc

    Founder and CEO, HealthiVibe LLC

  • 5:05 pm

  • Patient Engagement Sources and Solutions

  • 5:35 pm

  • Networking Reception

2018 Agenda

  • 8:00 am

  • Coffee & Tea

  • 8:30 am

  • Co-Chair’s Opening Remarks

    Schneider_Roslyn
    Roslyn Schneider, MD

    Global Patient Affairs Lead, Pfizer Medical


    Suzanne Schrandt, JD

    Director, Patient Engagement, Arthritis Foundation

  • 8:40 am

  • Community Hospital Center of Excellence Program Case Study: Engaging and Educating Communities on Therapeutic Treatment Options

    Addario Lung Cancer Association has created, with physicians, a treatment pathway protocol that maps out the steps that every patient should have access too, including clinical trials.

    They are working with an elite team of specialists to create an unsurpassed paradigm for Lung Cancer treatment worldwide – a patient-centric, collaborative model to provide all patients, regardless of where they live, access to the newest and most effective diagnostic and therapeutic techniques. This is called the Community Hospital Center of Excellence Program. This new “standard of care” established at Community Hospitals will be accompanied by a formal seal of excellence awarded by the ALCF and will ensure that no Lung Cancer patient is left behind.

    LeDuc_David
    David LeDuc

    Executive Director, Bonnie J Addario Lung Cancer Foundation

  • 9:10 am

  • FDA & Regulatory Perspectives

    • Impact of PDUFA VI and what to expect next?
    • 2018 Guidance on engaging patients
    • What is it that we want and don’t want when it comes to patient engagement metrics?
    • Patient reported outcomes


    Theresa Mullin, PhD

    Director, Office of Strategic Programs, CDER, FDA

  • 9:40 am

  • Understanding Emerging Legal Issues

    While the discussion around legal challenges is not new, there are still perceptions around legal issues that may impede industry, patients and advocacy representatives from  engaging with one another.

    • What are the perceptions of legal issues and fears that exist about patient engagement and how can we overcome them?
    • Patients want to know: how can they contribute to industry without encountering a legal roadblock?
    • How is industry thinking about and interpreting the laws around patient engagement? Each company may interpret them differently.
    • How can we include patient engagement within the current laws that do exist?
    • How can we work with our lawyers on what we all need to know before starting a patient engagement initiative?
    • How do you collaborate cross functionally (commercial, regulatory, medical) to create compliant but patient friendly language for example in agreements, and clinical trial participant-facing clinical research documents?

    Moderator:

    Schneider_Roslyn
    Roslyn Schneider, MD

    Global Patient Affairs Lead, Pfizer Medical

    Panelists:

    Amy Comstock Rick
    Amy Comstock Rick, JD

    President and CEO, Food and Drug Law Institute

    Louisa Daniels
    Louisa Daniels, JD, MBA

    VP & Assistant General Counsel, Pfizer


    T.J. Sharpe

    Melanoma Survivor & Patient Advocate, Starfish Harbor LLC

  • 10:10 am

  • Networking Break

  • 10:55 am

  • Mobile Technology in Clinical Trials: Clinical Trials Transformation Initiative’s (CTTI) Stakeholder Perceptions Project

    In this session, CTTI will share findings from a multi-stakeholder project undertaken by the Clinical Trials Transformation Initiative to better understand patient perspectives on mobile technologies in clinical trials. The survey, conducted amongst 100 patients across multiple therapeutic areas, evaluated the ways patients would be willing to use mobile technologies and the impact on their participation in clinical trials. Additional focus areas include:

    • Potential impacts of mobile on participant experiences in clinical trials
    • Patient willingness to share personal health data 
    • Important attributes for designing trials that address patient preferences and expectations
    • Implications for the research enterprise

    Les Jordan
    Les Jordan

    Working Group Member / VP & Chief Product Evangelist,  Clinical Trials Transformation Initiative (CTTI) / Target Health

    cindy geoghegan
    Cindy Geoghehan

    Cancer Survivor, Patient Advocate & Team Lead, CTTI’s Mobile Clinical Trials Stakeholder Perceptions Project

  • 11:25 am

  • Developing a Patient-centric Online Registry

    This case study will outline the process used to design and develop an online disease state registry based on patient insights research. In this session, you will learn:

    • How secondary and primary research methods were used to gain patient insights
    • Ways in which patient insights impacted registry design
    • Lessons learned from qualitative testing of a patient survey
    • How patient insights research was used to create study branding and messaging

    Valerie Powell
    Valerie Powell, MS

    Senior Director, Global Patient Insights & Engagement, Mapi Group

  • 11:45 am

  • Crossing the Patient Engagement Adoption Chasm

    Patient engagement in drug development has gained traction over the course of the last several years as the patient community has elevated their voice within the health ecosystem. However, patient engagement in drug development remains relatively nascent with only a small group of early adopters within the biopharmaceutical community. The innovation adoption curve provides a conceptual model that could help us develop new strategies to accelerate wider adoption of patient engagement in drug development.

     

    After this session, audience participants will be able to:

    • Describe the innovation adoption curve
    • Identify where patient engagement in drug development is on the innovation adoption curve
    • Determine what tactics would help push patient engagement in drug development over the chasm between early adoption and early majority

    Moderator:

    Boutin_Marc-2018
    Marc Boutin, JD

    CEO, National Health Council

    Panelists:


    Suzanne Schrandt, JD

    Director, Patient Engagement, Arthritis Foundation


    Anne Beal, MD

    Chief Patient Officer, Sanofi

  • 12:30 pm

  • Lunch

  • 1:30 pm

  • Case Study: Externally-Led Patient Focused Drug Development Meeting with The National Kidney Foundation and Achillion Pharma

    As the FDA has stated, patient input is critical in helping them understand the context in which regulatory decisions are made on new drugs. Patients, advocates and caretakers can share through the PFDD meetings the impact of their disease on their daily lives, what matters most to them and their experience with current drug treatments. In turn, according to the FDA, “this input can inform FDA’s decisions and oversight both during drug development and during our review of a marketing application.”

    In this session, the National Kidney Foundation and Achillion Pharma discuss their experience organizing the externally-led PFDD meeting, what role they each took on, how they collaborated on what has become the gold standard in PFDDs.

    Moderator:


    Jodie Gillon
    Global Medical Lead, Patient Engagement Rare Diseases, Pfizer Innovative Health

    Panelists:

    Meghana Chalasani
    Meghana Chalasani

    Operations Research Analyst, Office of Strategic Programs/Center for Drug Evaluation and Research (CDER), FDA

    Feldman David
    David Feldman, PhD

    Medical Project Director, National Kidney Foundation

  • 2:10 pm

  • How FARA and Horizon Pharma Partnered to Improve Clinical Development and Trial Design- Case Study

    This session will feature how the Friedreich’s Ataxia Research Foundation collaborated with Horizon Pharma on aspects of clinical development and trial design to better understand patients living with the disease and how to better develop medicine to help manage their disease. Key areas of discussion include how they collaborated on the following:

    • Focus groups to better understand drug administration
    • Clinical trial design to ensure feasibility and efficiency
    • Recruiting patients for clinical trials
    • Open discussion at FDA meetings

    Bryant_Kyle
    Kyle Bryant

    Director of the Bicycle Ride Fundraiser, rideAtaxia for the Friedreich’s Ataxia Research Alliance (FARA)

    Metz_Robert
    Robert Metz

    SVP, Global Business Operations and External Affairs, Horizon Pharma

  • 2:40 pm

  • FasterCures Report on How Patient Advocates Engage Industry

    McCleary_Kim
    Kim McCleary

    Acting Executive Director and Managing Director, FasterCures

  • 3:00 pm

  • Advocacy/Industry Partnerships:

    • How can I help bring the appropriate patient voice or representative patient voice to industry?
    • How can we work together? How do we set up a system?
    • How can we do match making with Patients and Industry?
    • How can patient advocacy help industry with recruiting and retaining clinical trial participants?
    • How are patient advocates engaging industry?
    • Examples of industry/patient advocacy group collaborations

    Moderator:

    McCleary_Kim
    Kim McCleary

    Acting Executive Director and Managing Director, FasterCures

    Panelists:

    Jocelyn Ashford
    Jocelyn Ashford

    Alliance and Advocacy Relations, Genentech


    Anne Beal, MD

    Chief Patient Officer, Sanofi

    Farmer Jen
    Jennifer Farmer, MS, CGC

    Executive Director, Friedreich’s Ataxia Research Alliance


    Suzanne Schrandt, JD

    Director, Patient Engagement, Arthritis Foundation

  • 3:40 pm

  • End of Conference