Improving the Engagement of Underrepresented People in Health Research Through Equity-Centered Design Thinking: Qualitative Study and Process Evaluation for the Development of the Grounding Health Research in Design Toolkit
Bibliographic record
Abstract
BACKGROUND: Health inequalities are rooted in historically unjust differences in economic opportunities, environment, access to health care services, and other social determinants. Owing to these health inequalities, the COVID-19 pandemic has disproportionately affected underserved populations, notably people of color, incarcerated and formerly incarcerated individuals, and those unable to physically distance themselves from others. However, people most strongly impacted by health disparities, and the pandemic, are not frequently engaged in research, either as researchers or as participants, resulting in slow progress toward improving health equity. Establishing ways to foster the engagement of historically excluded people is crucial to improving health equity through patient-centered health research. OBJECTIVE: This study aimed to assess the use of equity-centered design thinking (EDT) for engaging community members in research prioritization related to COVID-19. The co-design methods and subsequent production of a toolkit that can be used for engagement were assessed through process evaluation and qualitative methods. METHODS: Process evaluation and qualitative inquiry, using reflexive thematic analysis, were undertaken to examine the use of EDT. Patient community members and stakeholders remotely partnered with design and health researchers in a year-long digital process to cocreate capacity-building tools for setting agenda for research regarding the impact of COVID-19 on health outcomes. Through a series of 3 workshops, 5 community partners engaged in EDT activities to identify critical challenges for the health and well-being of their communities. The subsequent tools were tested with 10 health researchers who provided critical input over the course of 2 workshops. Interviews with co-designers, project materials, and feedback sessions were used in the process evaluation and finalization of an equity-centered toolkit for community engagement in research. Data from the co-design process, meetings, workshops, and interviews were analyzed using reflexive thematic analysis to identify salient themes. RESULTS: Process evaluation illustrated how the EDT co-design process offered an approach to engage patient partners and community stakeholders in health-related research around COVID-19. The participants expressed satisfaction with design thinking approaches, including creative activities and iterative co-design, as a means of working together. Thematic analysis identified 3 key themes: the value of authentic partnerships, building trust and empathy through design, and fostering candid dialogue around health and social issues impacting historically underrepresented and underinvested communities. CONCLUSIONS: The project addressed the need to test EDT strategies for fostering inclusive community engagement in health research agenda setting and provided an alternative to traditional top-down models. Despite the increasing use of human-centered design in health, few projects explicitly include equity in design thinking approaches. The use of methods and tools to intentionally engage underrepresented stakeholders in the process of research agenda setting and equitably sharing power between researchers and community members may improve health research, ultimately improving health equity.
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How this classification was reachedexpand
Direct model labels (unvalidated)
Per-model category and study-design labels from the labeling rounds. They are machine output, unvalidated, and the disagreement between models ships as data. No study design here is MEDLINE-validated yet.
| Model arm | Categories | Study design | Confidence |
|---|---|---|---|
| gemma | no category Domain: not available · Genre: Empirical About the Canadian research system: no · About a Canadian topic: no | Qualitative | low |
| gpt | no category Domain: not available · Genre: Empirical About the Canadian research system: no · About a Canadian topic: no | Qualitative | low |
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.525 | 0.019 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.010 |
| Science and technology studies | 0.008 | 0.001 |
| Scholarly communication | 0.000 | 0.001 |
| Open science | 0.002 | 0.002 |
| Research integrity | 0.000 | 0.003 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedLabeled directly by 2 models reading the full record.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".