Loading…

Sign up or log in to bookmark your favorites and sync them to your phone or calendar.

05: Patient Engagement [clear filter]
Monday, June 24
 

1:15pm

#129 EE: The Potential Value of Shared Decision Making (SDM) in Clinical Trial Consideration and Participation
Component Type: Workshop
Level: Intermediate

Shared decision making is a form of collaborative communication to help patients and their providers consider various care options and potential clinical trials. Through facilitated discussion and small group activity, participants will examine the value of SDM from the point of view of people living with different disease types, from common, chronic diseases, such as diabetes, to various stages of cancer and rare diseases. They will also consider a study design with patient-centered outcome measures related to decision-making and patient experience.

Learning Objectives

Explore the application of SDM in discussions including clinical trials as options; Examine examples from clinical development operations, assess them for their suitability for decision support; Discuss the challenges of implementation Explain a study design that could help demonstrate the potential of SDM to transform traditional clinical trial recruitment into patient-centered decision support.

Chair

Mary Stober Murray, MBA

Speaker

Facilitator
Diana Pankevich, PhD

Facilitator
T.J. Sharpe, PMP



Speakers
avatar for Mary Murray

Mary Murray

Associate Director, Diversity and Patient Engagement, Bristol-Myers Squibb Company
As an Associate Director for Diversity and Patient Engagement at Bristol-Myers Squibb, Mary facilitates collaborations with disease-specific and community-based organizations to bring relevant clinical trial options to patients and representative populations. Mary has co-chaired the... Read More →
DP

Diana Pankevich

Director,Innovation Policy, Pfizer Inc
avatar for T.J. Sharpe

T.J. Sharpe

Patient Advocate, Starfish Harbor LLC
T.J. Sharpe is a Stage IV melanoma patient who shares his journey through cancer in the Patient #1 Blog.  He was diagnosed in August 2012 with melanoma tumors in multiple organs, only four weeks after his second child was born. Since then, he has undergone six surgeries and four... Read More →


Monday June 24, 2019 1:15pm - 2:00pm
E and E Area Exh Hall San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA
 
Wednesday, June 26
 

8:00am

#308: Identifying High-Value Patient Engagement Opportunities: A Collaborative Three-Step Process for Sponsors and Patient Groups
Component Type: Workshop
Level: Intermediate
CE: ACPE 1.25 Application UAN: 0286-0000-19-649-L04-P; CME 1.25; IACET 1.25; RN 1.25

This workshop brings together sponsors and patient groups for facilitated discussion of high-value engagement opportunities. Using evidence-based resources, attendees apply a simple prioritization process to identify new activities and evaluate ROI.

Learning Objectives

Discuss how to apply a straightforward process for identifying engagement opportunities with high value for both sponsors and patient groups; Describe the diverse factors that sponsors and patient groups consider in evaluating the benefits and investments associated with engagement opportunities; Identify new patient engagement and relationship opportunities & new ways to partner across the R&D continuum.

Chair

Jaye Bea Smalley, MPA

Speaker

Facilitator
Linda Brennan, MPH



Speakers
avatar for Linda Brennan

Linda Brennan

Director, Community Partnerships, Cystic Fibrosis Foundation
Linda Brennan is Senior Director, Community Partnerships at the Cystic Fibrosis Foundation (CFF), which brings the perspectives of people affected by cystic fibrosis (CF) into all the Foundation’s activities, including research and clinical development, and provides opportunities... Read More →
avatar for Jaye Bea Smalley

Jaye Bea Smalley

Director, Global I and I Patient Advocacy and Life Cycle Management, Celgene Corporation
Jaye Bea joined Celgene as Global Director, Patient Advocacy and Life Cycle Management, Inflammation & Immunology in March 2018. Her twenty-five-year career in health care includes extensive experience in the public and private sector focused on advancing the needs and interests of... Read More →


Wednesday June 26, 2019 8:00am - 9:15am
Room 5AB San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA

2:00pm

#374 EE: Enabling Patient-Centric Clinical Studies: TransCelerate’s Patient Engagement Tools
Component Type: Workshop
Level: Intermediate

TransCelerate BioPharma is a collaboration of 19 of the world’s leading pharmaceutical organizations that has undertaken a Patient Experience initiative to enable greater patient engagement and partnership between patient and sponsors.

Learning Objectives

Describe TransCelerate’s Patient Experience Initiative and the toolkits; Recognize the value of patient engagement in the development of clinical study protocols; Identify the clinical study participant experience as a valuable outcome measure; Appreciate the opportunity for embedding these practices into the development process.

Chair

Mary Elmer, BSN, MSN, RN

Speaker

Facilitator
Lani Hashimoto

Facilitator
Anne Marie L. Inglis, PhD

Facilitator
Christina Cantrell, MSc



Speakers
avatar for Mary Elmer

Mary Elmer

Director, Patient Caregiver, Consumer Experience, Merck
Mary Elmer is the director of the Patient, Caregiver and Consumer experience at Merck. This group seeks to create an experience that engages consumers and patients in optimizing their health, wellbeing, and healthcare outcomes. She also leads a team for global patient engagement... Read More →
CC

Christina Cantrell

Senior Patient Insights Leader, Genentech, A Member of the Roche Group
Christina has worked for over 15 years in clinical research, always with a focus on the patient’s experience and primarily in outcomes research and insights gathering. She has worked at both large and community hospitals, health technology vendors, and she currently works at Roche... Read More →
LH

Lani Hashimoto

Clinical Trial Intelligence Manager, Novartis Pharmaceuticals Corporation
LH

Lani Hashimoto

Clinical Program Benchmark Manager, Novartis Pharmaceuticals Corporation
avatar for Anne Marie Inglis

Anne Marie Inglis

Director, US Clinical Operations, Development Clinical Operations, Pharma R&D, GlaxoSmithKline
Dr. Inglis has over 20+ years of experience in clinical research, spanning all phases of research, specializing in clinical operations. Most recently, she was Head of US Pharma Clinical Operations for GSK, where she was responsible for operational delivery of US Clinical Trials. Currently... Read More →


Wednesday June 26, 2019 2:00pm - 3:00pm
E and E Area Exh Hall San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA

2:00pm

#358: Improving the Trial Experience for Rare Disease Patients: Identifying and Overcoming Obstacles
Component Type: Workshop
Level: Intermediate
CE: ACPE 1.25 Application UAN: 0286-0000-19-697-L04-P; CME 1.25; IACET 1.25; RN 1.25

Participants will engage in an “overcoming obstacles” activity designed to encourage collaboration among rare disease patients, trial sponsors, and advocates. You will identify obstacles to trial participation and work to develop creative solutions.

Learning Objectives

Describe valuable and detailed input from patients on clinical trial design; Design patient interactions that encourage collaboration among patients, sponsors, and advocacy group; Explain how to optimize clinical trials to ensure they meet the needs of rare disease patients.

Chair

Kelly Franchetti, RN

Speaker

Patient Perspective
Kim Stephens, PhD, MA

Industry Perspective
Kelly Franchetti, RN

Academic Perspective
Ellyn Getz



Speakers
avatar for Kelly Franchetti

Kelly Franchetti

RN, CCRN, CEN Vice President, Global Head Patient Insights & Engagement, ICON plc.
Kelly has a diverse background comprised of nursing, advocacy & clinical research. She is also the mother of a child with a rare disease. This gives her a unique 360 degree view of patients’ & caregiver’s perspectives in the realm of disease management, treatment and burden. As... Read More →
avatar for Ellyn Getz

Ellyn Getz

Associate Director, Development and Community Engagement, CISCRP
Ellyn Getz is the Associate Director of Development and Community Engagement at CISCRP. She is responsible for directing CISCRP’s educational and outreach initiatives, including AWARE for All: Clinical Research Education Days, MT Pharmacy and Journey to Better Health mobile experiential... Read More →
avatar for Kim Stephens

Kim Stephens

President, Project Alive - Hunter Syndrome
Dr. Kim Stephens is the President of Project Alive, a nonprofit organization whose mission is to cure Hunter Syndrome/Mucopolysaccharidosis II through research and advocacy. Having a son with Hunter Syndrome herself, this is also a personal mission for Dr. Stephens. Dr. Kim Stephens... Read More →


Wednesday June 26, 2019 2:00pm - 3:15pm
Room 9 San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA
 
Thursday, June 27
 

9:00am

#407: A Patient Engagement Wrap Up: Lessons Learned from DIA 2019 and Where Do We Go from Here
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.

Chair

Kristin Voorhees, MA

Speaker

Facilitator
K. Kimberly McCleary

Facilitator
Jennifer Helfer, PhD

Facilitator
Deborah E. Collyar

Facilitator
Steven L. Roberds, PhD

Facilitator
Kristin Voorhees, MA



Speakers
avatar for Deborah Collyar

Deborah Collyar

President, Patient Advocates In Research (PAIR)
Deborah Collyar has applied a wealth of leadership skills from her successful IT business career to help create patient-centered medical research and healthcare, after her first cancer diagnosis at the age of 32. She founded Patient Advocates In Research (PAIR) in 1996, “where research... 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. McCleary serves on numerous advisory... 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
Room 5AB San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA