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IARC 60th Anniversary - 19-21 May 2026

Session : 20/05/26 - Posters

Whose Evidence Counts? Structuring and Measuring the Role of Lived Experience in Sex-and Gender-Responsive Cancer Research

TAYLOR C. 1, MEBONIA N. 3, AVILA QUIJAS A. 4, CIENFUEGOS MARTINEZ Y. 4, MUTEBI M. 5, HANDE V. 2, PASTRANA A. 1, MALLAFRÉ-LARROSA M. 2

1 Global Focus on Cancer, South Salem, United States; 2 City Cancer Challenge, Geneva, Switzerland; 3 Tbilisi State Medical University , Tbilisi , Georgia; 4 Universidad de Guanajuato , León, Mexico; 5 Aga Khan University , Nairobi, Kenya

Background
Sex-and gender-responsive cancer research requires evidence that captures how social roles, power dynamics, and lived realities shape access to care, treatment continuity, and outcomes. Yet cancer research and health system design continue to privilege clinical and technical data, while lived experience, particularly that of women in low- and middle-income countries (LMICs), is often treated as anecdotal rather than evidentiary. The Lancet Commission; Women, Power, and Cancer (2023) called for lived experience to be embedded as a form of evidence in cancer research and policy. However, few initiatives have translated this principle into structured research practice or developed mechanisms to make lived experience engagement accountable, traceable, and influential across research design, implementation, evaluation, and dissemination.

Objectives
To describe a structured, implementation-ready model for embedding and measuring meaningful engagement of people with lived experience across the cancer research/implementation cycle, focusing on accountability, influence on decision-making, and preparedness for translation into policy and systems change.

Methods
GRACE (Gender-Responsive Analysis for Cancer Equity) is a multi-country, participatory research and implementation initiative conducted in Tbilisi (Georgia), Nairobi (Kenya), and León (Mexico) as part of a City Cancer Challenge program, with technical/implementation support from Global Focus on Cancer (GFC). GRACE is designed to strengthen cancer systems for women by examining how gender shapes access, experience, and outcomes, and by preparing pathways for locally led systems change.

Lived experience is embedded structurally within the research process, with women with lived experience participating as full research partners rather than advisors. Engagement spans governance, study design, interpretation, prioritization of implementation pathways, and preparation for dissemination and policy dialogue. Meaningful engagement is operationalized through five core practices: inclusion, partnership, support, transparency, and documentation; drawing on the WHO Framework on Meaningful Engagement,  CIHR SPOR principles, and international guidance on patient/public involvement.

To move engagement from principle to practice, GRACE applies two complementary measurement tools: (1) an Engagement Rubric used for structured reflection at key research stages (onboarding, post–data collection, pre-dissemination), and (2) a GRIPP2-Lite log (Guidance for Reporting Involvement of Patients and the Public – short form) adapted to document where and how lived experience inputs inform research decisions. These tools focus on influence, accountability, and learning rather than performance scoring

Results
GRACE has established a structured, implementation-ready model for embedding and measuring lived experience within sex- and gender-responsive cancer research. The Engagement Rubric and GRIPP2-Lite log provide a transparent mechanism to document participation, decision influence, and pathways to translation across research stages, supporting systematic assessment of how lived experience informs research processes, interpretive framing, and preparedness for policy and systems engagement.  Laying the groundwork for accountable, people-centered evidence generation adaptable across diverse LMIC health system contexts.

Conclusions and implications
GRACE offers a replicable approach for embedding and measuring lived experience as evidence in cancer research. By strengthening accountability, transparency, and influence, this model responds directly to calls to move beyond symbolic engagement toward structured, people-centered research practice. It also provides a practical foundation for translating sex-and gender-responsive evidence into policy and health system action in LMIC settings.

 

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Engagement Rubric (CIHR/WHO Aligned)