The Conference Forum has announced the 4th annual Patients as Partners US (Patients US) event in Philadelphia on March 2-3, 2017. Patients as Partners is the only conference where the research is led equally by patients alongside industry, government and academia. The conference is devoted to understanding not only the patient perspective on the design of a clinical trial, but also the patient experience in the clinical trial.
"The focus of this year's program is on turning discussion into action," said Kate Woda, Conference Director. "Each session seeks to put ideas into actionable items and speakers must demonstrate the what, where, when and how behind the topic."
Featured sessions include:
- "Patients View on Why They Are/Are Not Participating in a Clinical Trial"
- Multi-stakeholder panel on "Partnering with Patient Organizations for Advancing Cures"
- Discussion on progress of the value framework developments, how patients have been included in this process and other framework developments.
- Industry case studies with Sanofi, EMD Serono, Merck and Eli Lilly & Company on incorporating patient involvement
- Updates from the FDA on Patient Focused Drug Development and Patient Engagement
Patients US will also present an "Ask the Patient" program enabling attendees to meet face-to-face with patients, who have experienced at least one clinical trial. These patients will be attending Patients US, providing a unique opportunity to learn about the realities of a clinical trial directly from the patient's point of view. Meetings with these patients will be both assigned and unassigned throughout the program.
Patients US is accredited by "Patients Included" to help address what matters most to patients to enable them to support clinical research. "Patients Included" provides a blueprint for:
- Understanding and incorporating the patient's voice in designing clinical trials and developing a clinical endpoint Vastly improving the patient's entire experience in a clinical trial
- Empowering the patient in the new medicines development process
Patients US is co-chaired by Ken Getz, MBA (Tufts CSDD, CISCRP), Suzanne Schrandt, JD (Arthritis Foundation), and Judith Ng-Cashin, MD (INC Research), and supported through partnerships with the Center for Information and Study on Clinical Research Participation (CISCRP) and Patient Empowerment Network (PEN).
The speaking faculty at Patients US 2017 includes:
- Lori Abrams, Director, Diversity & Patient Engagement, Bristol-Myers Squibb
- Pamela Bennett, BSN, RN, CCE, Executive Director of Patient and Professional Relations, Purdue Pharma
- Marc Boutin, JD, CEO, National Health Council
- Cynthia Chmielewski, Patient and Advocate
- Stephanie Christopher, Program Manager, Patient Centered Benefit-Risk, Medical Device Innovation Consortium
- Daisy Daeschler, Research Partnerships Officer, The Michael J Fox Foundation for Parkinson's Research
- Victoria DiBiaso, MPH, Associate Vice President, Global Head Clinical Operations Strategy & Collaboration, Sanofi
- Laura Failla, Patient and Advocate
- Kelly Franchetti, RN, CCRN, CEN, Executive Director Global Patient Insights & Engagement, Mapi Group
- Janet Freeman-Daily, Lung Cancer Patient & Activist
- Ken Getz, MBA, Director of Sponsored Research / Founder, Tufts CSDD / CISCRP
- Jodie Gillon, Senior Director, Advocacy & Professional Society Affairs, Achillion Pharmaceuticals
- Jamie Goldfarb, Patient Survivor and Advocate
- Kathy Gram, Vice President, Patient Advocacy, Snow Companies
- Melissa Hogan, JD, Rare Disease Patient Strategist, Founder/President, Saving Case & Friends
- Maureen Japha, JD, Director, Intellectual Property, FasterCures
- Thomas Klein, Founder and CEO, Be The Partner
- Sarah Krüg, CEO / President, Cancer 101 / Society of Participatory Medicine
- Deb Maskens, Vice Chair, International Kidney Cancer Coalition
- Douglas McCarty, PhD, Principal Investigator, Center for Gene Therapy / Associate Professor, Department of Pediatrics, The Research Institute at Nationwide Children's Hospital / The Ohio State University College of Medicine
- Jean McCoy, SVP, Strategy and Innovation, Health Advocacy Strategies
- Lauren McLaughlin, Associate Director, Research Partnerships, The Michael J Fox Foundation for Parkinson's Research
- Marilyn Metcalf, Head, Centre of Innovation, Global Clinical Safety and Pharmacovigilance, Global Medical, GlaxoSmithKline
- Paulo Moreira, VP, Global Clinical Operations, Head of External Innovation, EMD Serono
- Theresa Mullin, PhD, Director, Office of Strategic Programs, CDER, FDA
- Judith Ng-Cashin, MD, Chief Scientific Officer, INC
- Kathryn O'Callaghan, PhD, Associate Director for Science and Strategic Partnerships, Center for Devices and Radiological Health (CDRH), FDA
- Gary Ostroff, PhD, Research Professor in Molecular Medicine, UMass Medical School
- Christine Pierre, President, Society for Clinical Research Sites
- Jamie Ring, Head, Patient Advocacy, Spark Therapeutics
- Suzanne Schrandt, JD, Director, Patient Engagement, Arthritis Foundation
- T.J. Sharpe, Melanoma Survivor, Advocate and Cancer Blogger
- Nirmala Singh, Steering Committee / Former Patient Engagement Director, Patient Focused Medicines Development / National Kidney Foundation
- Abbe Steel, MSc, Founder and CEO, HealthiVibe LLC
- Komathi Stem, MS, Founder and CEO, MonARC Bionetworks
- Mary Stober-Murray, MBA, Associate Director, Diversity and Patient Engagement, R&D, Bristol-Myers Squibb
- Rachel Taliercio, DO, Director of Postgraduate Enrichment, Center for Excellence in Healthcare Communication, Office of Patient Experience, Cleveland Clinic
- Jeff Terkowitz, Director, Product Management, Inspire
- Michelle Vichnin, MD, Executive Director, Oncology, Office of the Chief Medical Officer, Merck
- Julie Walters, Founder, Raremark
- Tom Wallace, Senior Director, Global Advocacy & Professional Relations, Eli Lilly & Company
- MarlaJan Wexler, RN, Patient and Creator of Luckfupus.com
- Dana Wollins, Senior Director of Health Policy, American Society of Clinical Oncology (ASCO)
- Durhane Wong-Rieger, PhD, President & CEO / Founder & Head, Canadian Organization for Rare Disorders / Consumer Advocare Network
About Patients as Partners
Patients US is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient engagement across the entire clinical development continuum. For more information on Patients as Partners US.