2018 Executive Sponsor

Health Perspective Group

2018 Associate Sponsors

Splash Clinical

2018 Exhibitors

Artcraft Health
Rare Patient Voice
rareLife solutions

2018 Supporting Partners

Myeloma Crowd
Patient Empowerment Network
Patient Worthy

2018 Media Partners

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


Designed with the help of our robust advisory board comprised of patients, industry and regulatory, the 5th annual Patients as Partners program is the only conference in the US that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research.

The mission of the program is turning patient engagement discussion into action.  Each session will share the process behind the initiatives and include actionable items to ensure the impact of patient involvement is demonstrated.

Dr Roslyn Schneider, Pfizer Medical opens the conference on day one with a session on the evolution of patients as partners, and what’s coming next. This follows with cancer survivor Stephanie Joho, who talks about her journey through immunotherapy, what she has learned, and helping industry to better understand patient needs Tufts CSDD, Ken Getz delivers an overview of the results and implications of the 2017 Perceptions and Insights study, which gathered responses from nearly 12,500 people worldwide.

FDA & Patient Advocacy

In the first panel discussion of the day, Stephanie Christopher of MDIC moderates a session on a new method for incorporating patient preference information into the statistical design for clinical trials. Panelists include Heather Benz, FDA, Lauren McLaughlin, The Michael J Fox Foundation for Parkinson’s Research, Anindita Saha, FDA and Margaret Sheehan, The Michael J Fox Foundation for Parkinson’s Research Patient Council.

Patient Engagement Initiatives

Following the morning networking break, attendees can choose between two tracks of large pharma cases studies on applying patient engagement initiatives and demonstrating their impact:

Track A

  • How Tesaro is Integrating the Patient in the Clinical Development Process, with Beth Zaharoff, Tesaro
  • How Janssen is Creating Strategic Collaborations that are Driving Patient Centered Trials, with Katherine Capperella, Janssen Pharmaceuticals and Dr Bennett Levitan, Janssen R&D
  • How Takeda Used One or More of the Various Patient Engagement Frameworks Internally to Build Support and Cultural Shift for Patient Engagement, with Carol Meyer, Takeda Pharmaceuticals

Track B

  • How an Entire Large Pharma Team Incorporates Patients at Every Stage of Development, with Stephen Yates, UCB
  • Translating Patient Insight and Patient Experience Internally into Clinical Development Deliverables, with Mary Stober Murray, Bristol-Myers Squibb
  • How GSK Implemented Pivotal End-to-End Engagement Initiatives at Different Stages of Development, with Dr Marilyn Metcalf, GlaxoSmithKline

More Track Choices

Attendees will have additional choices on tracks dedicated to treatment decisions, patient involvement early in R&D and data and metrics

Track A

  • Patient Perspectives: What Is Your Decision Making Process When It Comes to Your Treatment? Moderated by Dr Jen Horonjef, Savvy Cooperative, with Michael Mittelman, American Living Organ Donor Fund/Independence Blue Cross, Tanika Gray Valbrun, The White Dress Project, and Marie Recine, patient advocate.
  • Involving Patients in Research and Early Clinical Development Phases, moderated by Jodie Gillon, Pfizer Innovative Health, with Jenny Ahlstrom, CrowdCare Foundation
  • How Patient Research Advocates Are Driving R&D: A Patient Case Study, with Geraldine Blavat, Parkinson’s Foundation Research Advocate and Karlin Schroeder, Parkinson’s Foundation

Track B

  • Engaging Patients by Giving Them What They Want…Their Data! Moderated by David Leventhal, Pfizer, with Jenny Ahlstrom, CrowdCare Foundation, Kristina Figueroa, patient advocate, Cindy Geoghehan, cancer survivor and patient, and Thérèse Johnsen, Novartis
  • Town Hall Meeting on Patient Engagement Metrics and Value, moderated by Dr Bennett Levitan, Janssen R&D, with Ken Getz, Tufts CSDD and Dr Jen Mills, Genentech
  • Combining Valid Statistical Technology with Crowdsourcing for Better Insights, with Jean McCoy, Health Perspectives Group and Jo Anne Jensen, Health Perspectives Group

Following the afternoon networking break are two panel discussions. First, Dr Luther Clark of Merck leads a session on engaging with communities to educate and enroll diverse populations. The panelists for this discussion are Diane Gross, Lupus Research Alliance, Dr Jen Horonjef, Savvy Cooperative, Jolanda Johnson-Moton, Eli Lilly and Company, and Christine Pierre, The Society for Clinical Research Sites.  Christine Pierre will also moderate a discussion on what patients expect from sites and how to ensure those expectations are met. Panelists include Kristina Figueroa, patient and advocate, Gretchen Goller, ICON, and Graham Wylie, Medical Research Network. HealthiVibe’s founder Abbe Steel ends the day with a session on harnessing the expertise of patient opinion leaders.

Day two begins with David LeDuc of the Bonnie J. Addario Lung Cancer Foundation, who discusses the Community Hospital Center of Excellence Program case study on engaging and educating communities on therapeutic treatment options. Next, Dr Theresa Mullin of the FDA provides key details on FDA and regulatory perspectives. The morning continues with a panel discussion, for the first time at Patients as Partners, on emerging legal issues impacting the industry, patients and advocacy representatives. Moderated by co-chair Dr Roslyn Schneider, the panelists for this session are Amy Comstock Rick, Food and Drug Law Institute, Louisa Daniels, Pfizer, and T.J. Sharpe, Patient Power.

Following the morning networking break, in the first of two panel discussions, Mark Boutin of the National Health Council leads a session on crossing the patient engagement adoption chasm. Joining him in this session are Suzanne Schrandt of the Arthritis Foundation and Dr Anne Beal of Sanofi. In the second panel discussion, The National Kidney Foundation and Achillion Pharma discuss their experience in organizing their externally-led patient focused drug development (PFDD) meeting, what roles they took, and how they collaborated on what has become the gold standard of PFDDs. The panelists are Meghana Chalasani, FDA, Dr David Feldman, National Kidney Foundation, and Jodie Gillon, Pfizer Innovative Health.

The morning concludes with Kyle Bryant, of Friedreich’s Ataxia Research Foundation and Robert Metz of Horizon Pharma discussing how they collaborated 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. After lunch, Kim McCleary of FasterCures presents the FasterCures report on how patient advocates engage industry. She then leads the final session of the conference, a panel discussion on advocacy/industry partnerships, with Jennifer Farmer of Friedreich’s Ataxia Research Foundation.

Networking Opportunities

Throughout the entire conference, there are numerous possibilities for networking. All breaks will be held in the exhibition hall where attendees can meet with organizations that provide tools and resources which may be helpful in supporting their patient engagement initiatives. We invite you to join us at the end of Day Two in the exhibition hall for a Networking Reception.

We look forward to meeting you in March.


Kate WodaPatients as Partners US Director