Conference Presentation: Destination: Patient Outcomes – Our Journey to Improving Patient Care
Beyond Tactics: Education Strategy and Planning in Rare Diseases
Sunday, January 21
3:30 PM - 5:00 PM
Location: Mediterranean 2
Physician Credits: 1.5
Nursing CE Credits: 1.5
Pharmacy Credits: 1.5
ACPE UAN: 0809-9999-18-122-L04-P (Knowledge)
Greselda Butler, BA, CHCP
Senior Manager, Grants and Contributions
Otsuka Pharmaceutical Development & Commercialization, Inc.
Hong Na, MS, EdD(c)
Associate Director, Medical Education
Dustin Ensign, CHCP
Manager, Global Grants and Independent Medical Education
Sarah Krug, MS
Founder, Health Collaboratory
New York, New York
Small patient populations. An even smaller pool of thought leaders and subject matter experts. Challenging regulatory requirements. These are just a few of the issues organizations may encounter when entering the rare disease space. Orphan drug development is hard. Traditional approaches used for common diseases may have limited or no application when it comes to rare diseases.
First, operating from a shared understanding that patients with rare diseases are in desperate need of these treatments, can and should serve as the principal guiding force for crafting and implementing an effective strategy. Second, relationships are a critical success factor in rare diseases. Identifying the right internal and external stakeholders and knowing when and how to engage them in purposeful communication and collaboration is a strategic imperative. Third, the challenges of being an N of 1 (or 2) in a highly scrutinized environment means the data must be compelling and tell a value story that resonates with patients, providers, payers and regulators. For these reasons and more, the educational strategy has a role to play that far exceeds that of supporting tactic in a department sub-function. In the case of rare disease, a carefully crafted education strategy can be successfully implemented and leveraged throughout the lifecycle of a rare disease product.
The proposed session will serve as a launchpad for a robust, interactive and patient-centered discussion about the rare disease landscape; its key stakeholders; earlier and appropriate involvement of the education strategist(s) and team in lifecycle planning; and potential benchmarks of a successful education strategy. We’ll take a hybrid learning approach with a brief didactic presentation, case example(s) with panel Q&A, a strategy workshop, and a special technology showcase to stimulate ideas about non-traditional education interventions in rare diseases.
- Define rare disease and orphan drug development from a regulatory perspective.
- Identify key stakeholders and describe their roles in the rare disease ecosystem.
- Critically assess the organizational and departmental goals and objectives for the rare disease product
- Give examples of key touchpoints across the lifecycle of a rare disease product where education interventions can be measured against an established benchmark