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Monday, June 24 • 2:15pm - 3:15pm
#142: Show Me the Money! Patient and Caregiver Roles and Compensation in Research, Development, and Innovation

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Component Type: Forum
Level: Basic
CE: ACPE 1.00 Knowledge UAN: 0286-0000-19-542-L04-P; CME 1.00; IACET 1.00; RN 1.00

With advancements in stakeholder engagement prompted most recently by the 21st Century Cures Act, PCORI, and FDA’s Patient-Focused Drug Development initiatives, patients and caregivers have increasingly shifted from being passive subjects to more active partners in research and healthcare innovation. Groups like the Clinical Trials Transformation Initiative have established best practices for how and when to engage patients in research and development, NIH’s NCATS has created toolkits to support patient engagement in therapy development, and PCORI has put forth recommendations that patients be included as valued research team members who are appropriately compensated for their time. However, no framework to date has put a spotlight on patient and caregiver motivations and expectations around involvement and compensation nor mapped competencies and support needs from their standpoint. As we work towards embracing patients and caregivers as valued partners, it is important to understand challenges as well as best practices to ensure we can pave a path forward.Through our research we will illustrate the motivations, needs and expectations of patient and caregiver involvement in research and healthcare innovation.

Learning Objectives

Discuss the types of roles patient/caregivers serve in research, development, and healthcare innovation; Describe the various mechanisms for patients and caregivers to get engaged and their respective barriers/facilitators to involvement from the patient/caregiver perspective; Discuss patient/caregiver views on ethics, competency, and support required for each role; Illustrate patient/caregiver motivations and expectations around involvement and compensation.

Chair

Sarah Krug, MS

Speaker

Panelist
Bray Patrick-Lake, MS

Panelist
Veronica Todaro, MPH

Panelist
Jaye Bea Smalley, MPA



Speakers
avatar for Sarah Krug

Sarah Krug

Chief Executive Officer, CANCER101
Sarah Krüg is the CEO of CANCER101, a patient advocacy organization whose mission is to help patients and caregivers navigate the cancer journey and partner with their healthcare team to make informed decisions. Sarah is also Founder of the Health Collaboratory, a global innovation... Read More →
avatar for Bray Patrick-Lake

Bray Patrick-Lake

Director of Stakeholder Engagement, Duke Clinical Research Institute
Bray Patrick-Lake supports efforts to actively engage patients, health advocacy organizations, and other stakeholders in Duke Clinical Research Institute’s local and national research programs. She has led extensive efforts through the CTTI to incorporate patient voice into clinical... 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 →
avatar for Veronica Todaro

Veronica Todaro

Chief Operating Officer, Parkinson's Foundation
Veronica (Ronnie) Todaro, M.P.H., has led the national programs of the Parkinson’s Disease Foundation (PDF) since joining the organization in 2004. In this role, she has pioneered national programs focused on patient engagement both at PDF and in the broader community. She has advocated... Read More →
avatar for Veronica Todaro

Veronica Todaro

Chief Operating Officer, Parkinson's Foundation
Veronica (Ronnie) Todaro, M.P.H., has led the national programs of the Parkinson’s Disease Foundation (PDF) since joining the organization in 2004. In this role, she has pioneered national programs focused on patient engagement both at PDF and in the broader community. She has advocated... Read More →


Monday June 24, 2019 2:15pm - 3:15pm
Room 5AB San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA