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Wednesday, June 27 • 4:00pm - 5:15pm
#389: Patient Observation Versus Patient Engagement: Optimizing Development

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Component Type: Forum
Level: Intermediate
CE: ACPE 1.25 Knowledge UAN: 0286-0000-18-680-L04-P; CME 1.25; IACET 1.25; RN 1.25

This forum will identify a sponsor that uses a Patient Leadership Council to regularly and continuously receive patient input, a patient group that has a collaborative relationship with a sponsor to continuously share patient insights, a sponsor that has seen landscape change and can share the impact and a healthcare provider (HCP) to discuss their historical collaboration with sponsors to collect and share patient insights.

Learning Objectives

Identify how healthcare providers have historically collaborated to share patient insights and how can they help advance patient engagement; Discuss how medical science liaisons engage with the healthcare providers to develop meaningful scientific exchanges while generating insights about patients; Discuss processes that help develop a comprehensive patient engagement program, and present experiences with patient communities.


Nadina Jose, MD


Fatima C. Scipione

Alexandra Malinowski, PharmD

Example of Best Practice in Protocol Design Review
Ellen Coleman, MPH, MS

Mark Summers

Kristin Smedley

avatar for Ellen Coleman

Ellen Coleman

President and CEO, VOZ Advisors
As president and CEO, Ellen Coleman leads VOZ Advisors and is responsible for all aspects of the overall firm path and direction. Ellen brings considerable experience in working with patients with life-threatening and chronic illnesses giving her a view of the entire patient experience... Read More →
avatar for Ellen Coleman

Ellen Coleman

President & CEO, MK&A
Ellen Coleman is President & CEO at VOZ Advisors, a global industry consulting firm specializing in patient and healthcare stakeholder engagement strategies (www.VOZAdvisors.com). She has experieince with chronic and life-threatening illnesses such as cancer and HIV. Ellen’s previous... Read More →
avatar for Nadina Jose

Nadina Jose

Assistant Professor, School of Health Professions, MS Clinical Research Program, Rutgers, The State University of New Jersey
Rejoined academia on Oct 2016 and is currently Assistant Professor at Rutgers University, Department of Health Informatics, Biopharma Education Initiative, School of Health Professions MS in Clinical Research Management. Dr. Jose is the Founder and President of Anidan Group Pte. Ltd... Read More →

Alexandra Malinowski

Senior Medical Science Liasion, Northeast, Ultragenyx Pharmaceutical Inc.
Alexandra is Senior Medical Science Liaison at Ultragenyx, a biopharmaceutical company committed to bringing to patients novel products for the treatment of rare diseases. Alexandra has expertise in metabolic bone disease and inborn errors of metabolism. She has supported the launch... Read More →
avatar for Fatima Scipione

Fatima Scipione

Senior Director, Patient Advocacy, Takeda Oncology

Kristin Smedley

President, Curing Retinal Blindness Foundation
Kristin Smedley is President and Co-Founder of the Curing Retinal Blindness Foundation, the only patient organization in the world for her two sons’ blindness, CRB1 LCA/RP. Kristin has led the CRBF to raise over $1.3 Million, introduced the first ever legislation in the United States... Read More →
avatar for Mark Summers

Mark Summers

President, Patient Engagement Division, WIRB-Copernicus Group (WCG)
Mark Summers currently serves as President of the Patient Engagement Division at WCG, a division which includes all business units within WCG that provide services that directly interface with patients. Prior to his role at WCG he founded ThreeWire, Inc., a patient recruitment, enrollment... Read More →

Wednesday June 27, 2018 4:00pm - 5:15pm EDT
Room 151AB Boston Convention and Exhibition Center 415 Summer Street, Boston, MA 02210 USA
  05: Patient Engagement, Forum