Based on the IQVIA Institute’s Patient Advocacy Summit, this paper highlights the expanding role of patient advocacy organizations in research. Patient groups now drive drug development, shape policy, and build registries. Key themes include applying AI ethically, improving diversity in clinical trials, overcoming operational challenges, and creating sustainable data strategies. These organizations act as trusted conveners, ensuring that the patient voice informs innovation, equity, and regulatory evolution. Empowering them strengthens healthcare systems, accelerates breakthroughs, and improves patient outcomes.

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