2018 Executive Sponsor

Health Perspective Group

2018 Associate Sponsors

Greenphire
HealthiVibe
ICON
MRN
Splash Clinical

2018 Exhibitors

Artcraft Health
Inspire
Rare Patient Voice
rareLife solutions
Synchrogenix

2018 Supporting Partners

CISCRP
IFAA
Myeloma Crowd
Patient Empowerment Network
Patient Worthy

2018 Media Partners

BioPharm Insight
BioPharma Dive
CanBiotech
Gene Therapy Net
Life Science Leader
Pharmalicensing
Pharmaphorum
PharmaVOICE
Rebar Interactive
SciDoc Publishers
Technology Networks

2018 Speaker Presentations

Day 1

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

Roslyn Schneider, MD

Global Patient Affairs Lead, Pfizer Medical

Patient Fireside Chat

Stefanie Joho

Cancer Survivor, Advocate and Consultant

with

Valerie Bowling

Executive Director, The Conference Forum

Overview of Key Results and Implications of the CISCRP 2017 Perceptions and Insights Study

Ken Getz, MBA

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

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

 

Moderator:

Stephanie Christopher

MA Program Director, Medical Device Innovation Consortium (MDIC)

Panelists:

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

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

 

Morning Track A

How Tesaro is Integrating the Patient in the Clinical Development Process

Beth Zaharoff

Director, Patient-Focused Clinical Trial Engagement, TESARO

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

Alyson Gregg

Director, Patient Insights, Janssen Pharmaceuticals

Bennett Levitan, MD, PhD

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

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

Carol Meyer

R&D Patient Engagement Lead, Takeda Pharmaceuticals

 

Morning Track B

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

Stephen Yates

Global Clinical Development & Medical Affairs, UCB

Translating Patient Insight and Patient Experience Internally into Clinical Development Deliverables

Mary Stober Murray

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

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

Marilyn Metcalf, PhD

Patient Engagement Lead, GlaxoSmithKline

 

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

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

 

Moderator:

Jennifer Horonjeff, PhD

Patient and Founder, Savvy Cooperative

Panelists:

Michael Mittelman

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

Tanika Gray Valbrun

Patient and Founder, The White Dress Project

Marie Recine

Patient, Advocate and Medical Writer

Involving Patients In Research and Early Clinical Development Phases

 

Moderator:

Jodie Gillon

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

Panelists:

Jenny Ahlstrom

Myeloma survivor and Co-founder, CrowdCare Foundation

Jack Aiello

Myeloma Patient, Advocate and Board Member, Patient Empowerment Network

Kathleen Weis

CEO, Aplastic Anemia and MDS International Foundation

Stephen Yates

Global Clinical Development & Medical Affairs, UCB

Beth Zaharoff

Director, Patient Focused Clinical Trial Engagement, TESARO

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

Geraldine Blavat

Parkinson’s Foundation Research Advocate

Karlin Schroeder

Director, Community Engagement, Parkinson’s Foundation

 

Track B: Data and Metrics

Engaging Patients By Giving Them Their Data

 

Moderator:

David Leventhal, MBA

Director of Clinical Innovation, Pfizer, Inc

Panelists:

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

Town Hall Meeting on Patient Engagement Metrics and Value

 

Moderator:

Bennett Levitan, MD, PhD

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

Panelists:

Ken Getz, MBA

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

Jen Mills, PhD

Director, Patient Engagement and Novel Patient-Focused Partnerships, Genentech

Combining Valid Statistical Technology with Crowdsourcing for Better Insights

Jean McCoy

SVP, Partnerships, Health Perspectives Group LLC

Jo Anne Jensen

SVP, Insights and Technology, Health Perspectives Group LLC

Carol Meyer

R&D Patient Engagement Lead, Takeda Pharmaceuticals

Tara Baney, PhD

Senior Patient Insights Leader, Genentech

Panel: Engaging with Communities to Educate and Enroll Diverse Populations

 

Moderator:

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

Jennifer Horonjeff, PhD

Patient and Founder, Savvy Cooperative

Yolanda Johnson-Moton, MBA

Director of External Relations, Medicines Development UnitEli Lilly and Company

Dan Milam

VP, Global Engagement, Society for Clinical Research Sites

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

 

Moderated by:

Dan Milam

VP, Global Engagement, Society for Clinical Research Sites

Panelists:

John Creveling

Patient and Parkinson’s Foundation Research Advocate

Kristina Figueroa, MSPH

Patient and Advocate

Gretchen Goller

Head of Patient Recruitment Services, ICON

Elisabeth Kurkimilis

Associate Director, Global Trial Management and Monitoring, Celgene Corp

Graham Wylie

CEO, Medical Research Network

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

Abbe Steel, MSc

Founder and CEO, HealthiVibe LLC

 

Day 2

Co-Chair’s Opening Remarks

Roslyn Schneider, MD

Global Patient Affairs Lead, Pfizer Medical

Suzanne Schrandt, JD

Director, Patient Engagement, Arthritis Foundation

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

David LeDuc

Executive Director, Bonnie J Addario Lung Cancer Foundation

FDA & Regulatory Perspectives

Theresa Mullin, PhD

Director, Office of Strategic Programs, CDER, FDA

Understanding Emerging Legal Issues

 

Moderator:

Roslyn Schneider, MD

Global Patient Affairs Lead, Pfizer Medical

Panelists:

Amy Comstock Rick, JD

President and CEO, Food and Drug Law Institute

Louisa Daniels, JD, MBA

VP & Assistant General Counsel, Pfizer

T.J. Sharpe

Melanoma Survivor & Patient Advocate, Starfish Harbor LLC

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

Les Jordan

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

Cindy Geoghehan

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

Using Digital & Social Media to Create Awareness for Clinical Trials

Matt Teuteberg

President, Splash Clinical

Developing a Patient-centric Online Registry

Valerie Powell, MS

Senior Director, Patient Insights and Engagement, ICON

Crossing the Patient Engagement Adoption Chasm

 

Moderator:

Marc Boutin, JD

CEO, National Health Council

Panelists:

Suzanne Schrandt, JD

Director, Patient Engagement, Arthritis Foundation

Anne Beal, MD

Chief Patient Officer, Sanofi

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

 

Moderator:

Jodie Gillon

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

Panelists:

Meghana Chalasani  –  LINK

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

David Feldman, PhD  –  LINK

Medical Project Director, National Kidney Foundation

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

Kyle Bryant

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

Robert Metz

SVP, Global Business Operations and External Affairs, Horizon Pharma

FasterCures Report on How Patient Advocates Engage Industry

Kim McCleary

Director, FasterCures

Advocacy/Industry Partnerships:

 

Moderator:

Kim McCleary

Director, FasterCures

Panelists:

Jocelyn Ashford

Alliance and Advocacy Relations, Genentech

Anne Beal, MD

Chief Patient Officer, Sanofi

Jennifer Farmer, MS, CGC

Executive Director, Friedreich’s Ataxia Research Alliance

Kathy Gram, RN, BSN

Head, Patient Advocacy, Deciphera Pharmaceuticals

Suzanne Schrandt, JD

Director, Patient Engagement, Arthritis Foundation