The Patient Roundtable convened patient groups to discuss their key ethics concerns about the pharmaceutical industry and how they define patient-centricity and trustworthiness for the sector. We aim to produce a catalogue of ethics concerns and corresponding standards that may help address perceived problems. Discussions topics include (1) how clinical trials are designed, (2) inclusivity in trial enrollment, (3) transparency in clinical trials and data-sharing, (4) returning trial results to patients, (5) issues related to the globalization of trials and accessibility of medicines, and (6) the ethics of industry-patient engagement and public-private partnerships. Our ultimate goal will be to understand patient group perspectives on how the healthcare innovation sector can better serve the needs of patients and advance population health, responsibly.
Participating Groups: PCORI, Michael J. Fox Foundation, Research!America, FDA Office of Minority Health, National Hemophilia Foundation, National Multiple Sclerosis Society, Alliance for Aging Research, Patients for Affordable Drugs, Cures within Reach, HealthyWomen, National Breast Cancer Coalition, Gemini Group, Johnson & Johnson