The evolving practice of patient and public involvement in Europe and the United States

Abstract

Patient and public involvement (PPI) in academic human research has been evolving in the United States and Europe since the early 1980s, when it was jump-started by activists responding to the HIV pandemic. This article provides a brief look at the development of PPI in academic human research in the US and Europe, highlights the PPI initiatives of several US and European organisations, discusses how PPI is gaining momentum in health technology assessment bodies, and provides recommendations for various stakeholders on how to incorporate more PPI into academic human research.

Patients’ knowledge, preferences, and perspectives about data protection and data control: an exploratory survey

“…Finally, when it comes to enabling meaningful (individual and collective) control, some lessons can be learned from the debates surrounding patient empowerment in a broader sense. For patient empowerment to be successfully operationalized, several enablers are necessary, such as achieving a common understanding of the term itself, enhancing health literacy and education, effective communication about empowerment, addressing cultural barriers, communicating about the individual benefits for each patient, and providing structural support and resources ( Hoos et al, 2015 ; Geissler et al, 2017 ; Haerry et al, 2021 ). By analogy and based on the findings of this study, data control requires the same prerequisites for its meaningful practice.…”

The Crucial Role of Patient Advocates in Pediatric Oncology Research—Insights From ACCELERATE

“…Historically, advocates have played key roles in reconceptualizing issues and driving change in medical research, particularly pediatric oncology. 1 In pediatric oncology, parents and primary caregivers step into the crucial role of advocating for young patients. These advocates bring passion and determination to address challenging issues and drive progress in pediatric oncology.…”

“…In the complex landscape of medical research, where competing interests can influence discussions, advocates serve as impartial catalysts to bridge stakeholders and hold them accountable. Historically, advocates have played key roles in reconceptualizing issues and driving change in medical research, particularly pediatric oncology …”