Advancing equity in cancer research through principled partnership: stakeholder engagement practices in The Social Interventions for Support during Treatment for Endometrial cancer and Recurrence (SISTER) Study
Bibliographic record
Abstract
In cancer, lack of social support is associated with reduced survival. Peer support interventions have reduced social isolation among Black women with cancer but have yet to be adapted for Black people diagnosed with endometrial cancer – a growing, high-need demographic that has been historically excluded from community-engaged research. Our research team at the University of Washington addressed this gap by working within an established community partnership to develop a pragmatic randomized controlled trial to adapt and test social support interventions among Black women with EC – the Social Interventions for Support during Treatment of Endometrial Cancer and Recurrence (SISTER) Study. The goal of this commentary is to describe the stakeholder engagement practices used in the conceptualization and start-up of the SISTER Study. The research team, including Black endometrial cancer survivors, developed a grant proposal, grounded in engagement values derived from the Patient-Centered Outcomes Research Institute® and the Public Health Critical Race Praxis. The team implemented values-aligned stakeholder engagement activities, including the creation of an advisory board charter, structuring meetings and roles, incorporating stakeholder input into study material and protocols, establishing an external advisory board, and developing an engagement evaluation plan. Overall, we learned that it is possible to design and operationalize a community-engaged pragmatic randomized controlled trial in alignment with a racial equity social justice research methodology and patient-centered outcomes research engagement practices. We describe other lessons learned, including operational challenges to implementing our engagement practices and our approaches to addressing these challenges, and promising practices to replicate in future studies or partnerships. The SISTER Study is an example of establishing principled methods of stakeholder engagement within an area of study and population that has been underrepresented in stakeholder-engaged research. The engagement practices within the SISTER Study can inform community-academic partnership practices in health equity research. Black people diagnosed with endometrial cancer have a higher chance of dying from the disease compared with White women, and this population has been historically excluded from community-engaged research. Peer support during treatment can improve survival in other cancers, but this has not been tested among Black women with endometrial cancer. To address this gap, our research team at the University of Washington developed a study to test social support interventions among Black women with endometrial cancer in collaboration with patient partners – the Social Interventions for Support during Treatment of Endometrial Cancer and Recurrence (SISTER) Study. We describe how the research team partnered with Black cancer survivors and caregivers to design and launch a study grounded in engagement values intended to advance equity in the process and outcomes of health services research. Stakeholder engagement activities included establishing a foundational partnership with Black endometrial cancer survivors, collaborating to conceptualize and write a grant, creating an advisory board charter, establishing an external advisory board, structuring meetings and roles, incorporating stakeholder input into study material and protocols, and developing an engagement evaluation plan. The partnership practices and lessons learned presented in this comment can inform community-academic partnerships in research that aim to address racial inequities in health.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.409 | 0.282 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.010 | 0.013 |
| Scholarly communication | 0.009 | 0.008 |
| Open science | 0.004 | 0.022 |
| Research integrity | 0.006 | 0.015 |
| Insufficient payload (model declined to judge) | 0.003 | 0.001 |
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, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
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".