Patient advocacy organizations are essential in bringing therapeutics to patients particularly in their capacity to influence and provide experiential knowledge for the development of meaningful treatments, clinical trials, and regulations. In order to further support collaboration between patient advocacy organizations and industry in the context of drug development, a study published in the Orphanet Journal of Rare Diseases describes recommended best practices and standards to support such collaborations. It aims to provide guidelines for day-to-day decision-making for patient organizations when working with pharmaceutical companies.
Initially, nine experts formed an independent expert panel: four representatives of patient advocacy organizations, three leaders in pharmaceutical industry, and two facilitators. The project was based on the revision and broadening of guidelines titled “The International Fibrodysplasia Ossificans Progessiva Association’s (IFOPA) Guidelines for Engagement with Pharmaceutical Companies”, previously developed by the IFOPA.
The independent expert panel particularly emphasized the importance of transparency in all interactions between patient organizations and industry to improve trust and prevent ethical and legal issues that may arise during research and treatment development. The authors also highlight remaining challenges such as regional differences, and the dynamism and complexity of such partnerships.
For details, please read the full article including the guidelines.