In September 2021, the Office of Planning, Research, and Evaluation (OPRE) within the Administration for Children and Families (ACF) contracted with the Urban Institute to conduct the Advancing Contextual Analysis and Methods of Participant Engagement (CAMPE) project. The goal of the CAMPE project was to aid OPRE in better understanding, incorporating, and advancing equitable research practices in OPRE projects. To achieve this goal, the project was designed to support OPRE’s efforts to develop tools and guidance for applying an equity lens to research and evaluation projects in the federal context. A core focus of the project was on ways to better engage people who have lived experience with ACF programs as collaborators and partners in research and evaluation. 

One key aspect of this work included developing and engaging a community advisory board (CAB) of individuals who have lived experience with ACF programs (Temporary Assistance for Needy Families, the Child Care and Development Fund, refugee resettlement, child welfare and foster care, and others) to get feedback and input on several OPRE documents and materials related to research processes. Urban recruited, onboarded, trained, and supported a 13-member CAB to review and comment on these materials. The CAMPE CAB reviewed multiple documents and processes within OPRE to advance the aim of more equitable research practices in OPRE projects. One OPRE process that the CAB reviewed was for informed consent.

The CAMPE CAB reviewed a sample OPRE study informed consent form, which includes the steps researchers take and the language they use to inform people of their rights, risks, and benefits when choosing whether to participate in a research study. This report contains the CAB’s recommendations on developing and implementing person-centered informed consent processes. A person-centered approach reflects an understanding of the perspective, position, and experience of the intended participant.

Purpose

Obtaining informed consent from research participants is a necessary and valuable component of any research study. While researchers and Institutional Review Boards consistently work to improve the clarity, accessibility, and transparency of informed consent processes, individuals participating in research rarely have a say in how the informed consent process is developed or conducted.

The purpose of this report is to document and share the CAMPE CAB’s recommendations on developing and implementing person-centered informed consent processes. We note that the recommendations contained in this report may require additional work on the government’s part to best operationalize them.

Key Findings and Highlights

• Humanize the research process by ensuring that the informed consent language and delivery are person centered. 
• Create informed consent processes that are conversational and approachable. 
• Ensure that all data collection has a concrete purpose that is clearly conveyed in the informed consent form.
• Consider hiring or training people from the community of interest to develop, review, pilot, and or deliver the informed consent process.