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Thursday, June 27 • 9:00am - 10:15am
#407: A Patient Engagement Wrap Up: Lessons Learned from DIA 2019 and Where Do We Go from Here

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Component Type: Workshop
Level: Intermediate
CE: ACPE 1.25 Knowledge UAN: 0286-0000-19-721-L04-P; CME 1.25; IACET 1.25; RN 1.25

The final day of DIA 2019 presents a unique opportunity for the multidisciplinary stakeholders interested in the continued growth and evolving trajectory of patient engagement and patient-focused drug development to convene and collectively consider opportunities to carry on this important work beyond the annual meeting. Members of DIA’s Annual Meeting Planning Committee who represent the Patient Engagement track will host an interactive forum to discuss key take-home messages discussed throughout the four days of DIA 2019 and implications for the future of patient engagement.

Learning Objectives

Identify themes and emerging trends relevant to partnering with patients and expanding how we incorporate the patient’s voice into drug development; Describe practical solutions for applying learnings from DIA 2019; Identify opportunities to communicate and share findings across stakeholder groups, foster adoption of the learnings, and continue to advance our shared understanding of outcomes of existing and emerging patient engagement work; Discuss implications for the future.


Kristin Voorhees, MA


K. Kimberly McCleary

Jennifer Helfer, PhD

Deborah E. Collyar

Steven L. Roberds, PhD

Kristin Voorhees, MA

avatar for Deborah Collyar

Deborah Collyar

President, Patient Advocates In Research (PAIR)
Deborah Collyar has been a patient engagement leader since her first cancer diagnosis. She founded Patient Advocates in Research (PAIR) international communication network in 1996, "where research meets reality." Deborah infuses hundreds of patient advocates into research programs... Read More →
avatar for Jennifer Helfer

Jennifer Helfer

Patient Advocacy, bluebird bio, Inc.
Jennifer Helfer joined bluebird bio in December of 2015. As part of the Patient Advocacy team, Jen serves as a conduit to patient organizations and advocates. Patient Advocacy is responsible for building and sustaining trusted collaborations with stakeholders to address patient and... Read More →
avatar for K. Kimberly McCleary

K. Kimberly McCleary

Founder and Chief Executive Officer, The Kith Collective, LLC
Kim McCleary has been at the forefront of patient engagement for nearly 30 years. She is a nationally regarded subject matter expert on patient-focused medical product development, patient-centered benefit-risk assessment, and organizational change. Kim has authored scores of publications... Read More →
avatar for Steven Roberds

Steven Roberds

Chief Scientific Officer, Tuberous Sclerosis Alliance
Steve leads the development and execution of the TS Alliance's scientific strategy through partnerships and conversations with stakeholders including individuals and families affected by TSC, basic and clinical researchers, healthcare providers, government agencies, and other non-profit... Read More →
avatar for Kristin Voorhees

Kristin Voorhees

Senior Manager, Patient Advocacy, Ultragenyx Pharmaceutical
As Senior Manager of Patient Advocacy at Ultragenyx Pharmaceutical, Kristin supports, educates, and empowers the rare disease community and strives to make a positive difference in the lives of patients, caregivers and families. She is trained in health communications and has led... Read More →

Thursday June 27, 2019 9:00am - 10:15am PDT
Room 5AB San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA
  05: Patient Engagement, Workshop