For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation.
A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug development, particularly through initiatives like EUPATI‘s Patient Expert Training, which aims to equip patients with skills to actively participate in drug development and regulatory processes. The authors—a team of scholars and practitioners—explore how patient involvement requires substantial knowledge, risking reliance on a select group of well-prepared “elite” patients.
The authors note that “expert” patients must prepare rigorously to participate meaningfully in drug development, requiring not only experiential knowledge but also familiarity with drug development processes, healthcare systems, and stakeholder interaction. They also often need English proficiency, due to the global nature of regulatory and pharmaceutical interactions, and typically have connections with patient organizations to represent wider patient perspectives. These expectations create a divide: some patients are viewed as knowledgeable “experts” and therefore more desirable collaborators, while others remain “lay” due to limited access to such training or resources.
This setup can limit inclusivity in patient engagement by privileging “expert” patients while sidelining “lay” patients, who may have valuable insights despite their lack of formal training. To address this, the authors argue that the criteria for participation should be adjusted to make room for a wider diversity of patients, including those with varying health levels and knowledge. Furthermore, the structure of participatory activities, often designed around the schedules and stamina of healthy individuals, needs modification to accommodate the lived experiences and limitations of the patient population.
Ultimately, democratizing drug development requires systemic reform and a commitment to fostering collaborations where diverse patient perspectives are both heard and valued.
Read more at this link on the Taylor & Francis Online platform
Citation
Egher, C., Bereczky, T., Snede, L., & Zvonareva, O. (2024). Patient engagement in drug development: dialogically problematizing participation. Science as Culture, 1–21. https://doi.org/10.1080/09505431.2024.2410719