Members of the biopharmaceutical industry, including CSL, have teamed up with patient advocacy groups to form a consortium: the Patient Advocacy Leaders and Drug Development Industry Network (PALADIN).
In recent years, the biopharmaceutical industry has elevated the role of the patient, acknowledging that patients are the experts in what it’s like to live with their disease or condition. CSL, which develops and manufactures medicines and vaccines, lists patient focus first among its values and, for a number of years, has been active in supporting outreach programs about clinical trials and improving the patient experience.
PALADIN, which has 23 member organizations, launched in March and aims to carve out meaningful roles for advocacy groups and patients in clinical research trials, the regulated scientific process that examines the safety and efficacy of potential new treatments.
Advocacy groups are “trusted partner(s) in a patient’s health journey,” PALADIN says on its website, and the patients these nonprofit organizations represent are essential to clinical research. The National Hemophilia Foundation, the American Kidney Fund and Black Health Matters are among PALADIN’s advocacy group members. Tufts University’s Center for the Study of Drug Development leads project management and facilitation for the consortium, which is funded by Sanofi.
Last month, a dozen members of PALADIN, including CSL’s Ellyn Getz, authored an article published in Applied Clinical Trials Online explaining the consortium’s mission.
“We look forward to working together to develop consensus-based guidelines, training, resources and competencies that will optimize patient advocacy group-biopharmaceutical company collaborations. Ultimately, we believe PALADIN’s impact will enable more consistent, effective and efficient engagements that accelerate the development of new medical therapies and better align medicines development with patient needs,” the authors wrote.
Getz, Director of R&D Patient Partnerships, says CSL is proud to be part of the R&D-focused consortium. “Steve Walker and I have helped develop communication pieces and resource guides designed to build more effective partnership between industry and patient groups,” she said. Deirdre BeVard, CSL’s Senior Vice President for R&D Strategic Operations, has joined PALADIN’s executive committee, and other CSL employees will provide support for this initiative in the future.
Read the article authored by Getz and other members of PALADIN.
