The pharmaceutical industry, the Food and Drug Administration, and disease advocacy organizations like Celiac Disease Foundation (CDF) are all seeking meaningful patient engagement in the drug research and development process. There is considerable evidence that when patients are active participants in disease research, the drug development process is not only more cost and time efficient, but also more profound. Unfortunately, best practices on how to incorporate meaningful patient engagement are lacking, compelling virtually every entity involved to reinvent the wheel when a new drug is proposed. All parties, but especially the patient community seeking life-improving advances, suffer as a result.
On June 15, 2017, Talia Machlouf, Director of Advocacy and Research for Celiac Disease Foundation attended the National Health Council (NHC) Conference: Sponsor-Patient Interactions: Establishing Consensus on Good Practices for Patient Engagement in Drug Development in Washington, D.C., in partnership with the Genetic Alliance and Food and Drug Law Institute. The purpose of the Conference was to talk through sponsor-patient interactions as part of achieving meaningful patient engagement in drug development with a goal of establishing recommendations to inform company and disease advocacy organization policy.
The Conference included a multi-stakeholder expert panel, as well as breakout sessions, where attendees discussed the purpose of patient engagement in the research and drug development process. Each breakout group included representatives from industry and disease advocacy organizations. Consensus quickly grew around the principal that building trust and transparency between pharmaceutical companies and disease advocacy organizations is a prerequisite to any successful patient engagement strategy. Other areas of common agreement developed around the need to establish clear protocols and paths of engagement in both industry and disease advocacy organizations. This Conference was exceptionally timely as Celiac Disease Foundation continues to expand its Patient Advocacy Program and iCureCeliac® patient registry, both of which seek to foster improved patient engagement at every stage of the drug research process.
In joining forces with organizations like the National Health Council and The Genetic Alliance, Celiac Disease Foundation continues to work to improve the quality of life and prognosis of celiac disease patients and their families.
About the National Health Council
Founded in 1920, the National Health Council (NHC) is the only organization that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. Made up of more than 100 diverse national health-related organizations and businesses, the NHC’s core membership includes the nation’s leading patient advocacy organizations, which control its governance and policy-making process. Other members include professional and membership associations; nonprofit organizations with an interest in health; and representatives from the pharmaceutical, generic drug, health insurance, device, biotechnology, and communications industries.
National Health Council Conference Focuses on Good Practices for Patient Engagement in Research