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Extending participant feedback beyond clinical studies: A modular system designed to connect researchers and participants

Published online by Cambridge University Press:  03 November 2025

Alicia Giordimaina Carmichael*
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA
Donna Walter
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA
Brandon Patric Labbree
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA
Boluwatife Dogari
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA
Natalie Leonard
Affiliation:
Taubman College of Architecture and Urban Planning, University of Michigan, Ann Arbor, MI, USA
Kathryn Ward
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA School of Social Work, University of Michigan, Ann Arbor, MI, USA
Xiaoya Geng
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA School of Social Work, University of Michigan, Ann Arbor, MI, USA
Medha Raju
Affiliation:
Anderson School of Management, University of California, Los Angeles, CA, USA
Jess Francis-Levin
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA
Richard Gonzalez
Affiliation:
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA
*
Corresponding author: A.G. Carmichael; Email: almagior@umich.edu
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Abstract

Introduction:

Declining participant engagement threatens human subjects research. Participant feedback systems (PFS) may combat this decline by empowering participants to evaluate their research experiences and share that feedback with researchers to identify targets for improvement. PFS signal that participant experiences are prioritized, making the request for feedback itself an intervention. PFS design work remains largely confined to clinical research. This exploratory study investigates the design parameters of extending PFS to nonclinical research. We conducted focus groups with nonclinical stakeholders: Experienced research participants (ERP) and research team members (RTM).

Methods:

ERP focus groups were organized by affinity (LGBTQIA+, BIPOC, persons with disabilities, neurodivergent, and a general group). RTM focus groups were organized by unit within the University of Michigan. Transcripts were analyzed using inductive thematic analysis.

Results:

Ten focus groups (ERP: 5, n = 25; RTM: 5, n = 26) identified key PFS design considerations: (1) motivations for feedback, (2) feedback collection, and (3) feedback delivery. ERP and RTM collectively preferred anonymous web-based surveys with six potential topic areas: communication, respect, being valued, receiving value, burden, and safety. Feedback delivery faced two key design tensions: balancing institutional standardization with study-specific insights and aligning leadership’s preference for high-level summaries with frontline staff’s need for detailed, real-time feedback.

Conclusion:

Expanding PFS to nonclinical research requires balancing centralization and study-specific flexibility. While centralization enhances consistency, the diversity of nonclinical studies necessitates adaptable implementation. A hybrid model is proposed to optimize feasibility. Future research should refine and test this model.

Information

Type
Research Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press on behalf of Association for Clinical and Translational Science
Figure 0

Table 1. Motivations for gathering/providing feedback – themes and exemplars

Figure 1

Table 2. Core survey content areas – themes and exemplars

Figure 2

Figure 1. Feedback system design. The system operates in two phases: [A] preparation and [B] collection & utilization. During preparation, the feedback service team collaborates with the study team to (a) customize the survey, solicitation process, and dashboard. Once approved by the study team, feedback service team, and any involved ethical oversight bodies (e.g., IRB), the system can (b) advance to collection & utilization. In collection & utilization, the study team (c) distributes the survey to participants, who (d) submit anonymous feedback. This feedback is (e) securely stored in a database and (f) summarized in a dashboard. The study team (g) reviews the feedback to inform study improvements. To protect study team anonymity, the feedback service team (h) de-identifies data before adding it to an institutional repository. Finally, the repository data is (i) compiled into dashboards or reports for (j) Institutional Leadership. Symbols are original or modified from www.flaticon.com.

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