Proceedings: DIA 2019 Global Annual Meeting
DIA
he role of the patient in drug development has grown, and patient-centric initiatives can be seen across industry and regulatory bodies. Two sessions at DIA’s Global Annual Meeting centered on how patient engagement has transformed the biopharmaceutical industry, and how to measure the impact of patient engagement. The lessons learned from these two sessions show how crucial it is to incorporate patients at every stage of the drug development process while establishing the importance of assessing patient engagement to understand best practices.
Key Takeaways
- Building effective tools for measuring the impact of PE involves a framework focused on monitoring, evaluating, learning.
- Some tenets of patient engagement include involving patients at every stage, engaging and incorporating patient views in all stages of drug development, developing research methodology that incorporates the patient preference, and ensuring patient voice for determining research priorities.
- Engaging all critical stakeholders across the healthcare environment is critical to make effective patient engagement a reality.
Measuring the Impact of PE Activities in Medicines R&D: A Way to Sustain Cultural Change
SPEAKERS AND PANELISTS
Measuring the Impact of Patient Engagement Activities in Medicines R&D
Mathieu Boudes, PARADIGM Coordinator, European Patients’ Forum (Chair)
Nicholas Brooke, Executive Director, Patient Focused Medicines Development (PFMD), The Synergist.org
Debra Michaels, Associate Director, Scientific Programs & Patient Engagement Lead, DIA
Jaye Bea Smalley, Director, Global I and I Patient Advocacy and Life Cycle Management, Celgene Corporation
Lidewij Eva Vat, Researcher and Lecturer Meaningful and Sustainable Patient Engagement, Vrije Universiteit (VU)
Impact of Patient Engagement on the Biopharmaceutical Industry’s Business and Organization
K. Kimberly McCleary, Founder and Chief Executive Officer, The Kith Collective, LLC (Chair)
Joel Beetsch, Vice President, Global Patient Advocacy, Celgene Corporation
Nikki Levy, Vice President, Patient Engagement, Alkermes
Jan Nissen, Vice President, Patient Innovation & Engagement, Merck & Co., Inc.
Jessica Riviere, Senior Director of Global Patient Advocacy, Biogen
Angie Wilson, Director, Alliance and Advocacy Relations, BioOncology, Genentech, A Member of the Roche Group
From DIA-PCORI initiatives, a proposed “return on engagement” toolkit linked to developing metrics for assessing patient engagement encompasses long-term drug development portfolios, outreach, study volunteer engagement, and trial performance. Through PCIs (patient-centric initiatives), such as patient advisory boards, telemedicine, social media, and patient counseling and education, cost and return metrics can be developed to assess the impact of these initiatives. To tie existing tools and frameworks together, IMI’s PARADIGM presented the need for coherent monitoring and evaluation frameworks to “connect the dots” between patient engagement activities, the impact, and the developed metrics.
Impact of Patient Engagement on the Biopharmaceutical Industry’s Business and Organization
Patient engagement and advocacy functions are akin to relationship management and require multidisciplinary approaches to consider psychosocial and biomedical aspects as well as communication and dissemination. While the research and science side of the industry emphasizes prioritizing patients and designing clinical trials around the patient, certain disease spaces call on the need for social work and community perspectives once underrepresented in the industry.
An underlying theme from this session was a bell curve describing the adoption of patient-centric practices. How do we shift the curve towards Innovators and Early Adopters, as opposed to Late Majority and Laggards? This question is critical to bolstering patient engagement in the industry, and ties to the importance of being able to measure the impact and create tools and frameworks that enable seamless and effective adoption of these practices. Connecting the impact of patient engagement from R&D to organizational structure in a measurable, meaningful way shows promise to truly place patients at the center of the field. These two sessions from the Patient Engagement track shed valuable light on the steps to do so.