Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.
It is generally accepted that ethical research requires valid informed consent and that current informed consent practice frequently fails to attain it. Interventions concerning the content and methods of communication in informed consent have met with limited success. One explanation is that they reflect an outdated and limited model of how communication functions, the transmission model of communication. This model assumes that communication is linear, is limited in time, and succeeds when the content of a message is passed from one person to another without distortion. Later communication models have challenged the limitations and inaccuracies of this model, emphasizing the continuous, contextual, and relational nature of communication. Looking beyond these assumptions behind current interventions can open multiple paths of research and intervention that have the potential to affect and improve the informed consent process in much greater ways than have been achieved previously.
Directly involving underserved populations in determining funding criteria is both feasible and important, and can better fulfill PCORI's goal of incorporating patient priorities.
Governments, funders, and institutional policies increasingly encourage and even mandate the involvement of nonscientists in the ethical review of research, most famously in institutional review boards (IRBs), but also on community advisory boards (CABs) and other committees that contribute to research governance. In spite of these requirements, few have examined how different factors such as recruitment strategies, training, and different qualifications shape the contributions of nonscientists to the research enterprise. This pilot study begins to fill in this lacuna by interviewing nonscientist members of IRBs and community members of CABs. Results suggest patterned differences in demographics, recruitment strategies, training, and perceived qualifications between community members on these two types of boards with potential implications for how we perceive the scope of contributions that nonscientists can provide to the ethical review of research and the strategic ways these contributions can be elicited.
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