doctor and patient shaking hands and smiling

PCOR: Brave new world meets old institutional policies

PCOR: Brave new world meets old institutional policies

recent article by PROKids team member Jessica Chung, et al., discusses the tensions between the engagement of patient stakeholders in research and the institutional and legal framework governing that engagement. Patient engagement during all stages of research has become increasingly common. Yet institutional policies, often intended to protect patients and research participants, are evolving to meet this new reality.

Chung, et al. lays out these tensions using examples from trial funded by the Patient-Centered Outcomes Institute and led by Dr. Elizabeth Cox, Director of PROKids. Quandaries arose when the values or preferences of patient stakeholders conflicted with institutional policies about background checks, letters about privacy breaches, and study reminders. 

Read the article


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