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Purpose of Review <p>Advocacy has played a pivotal role in shaping and enhancing cancer research to more effectively and meaningfully consider outcomes that matter most to patients. Guidelines and frameworks for cancer advocacy have been developed to support cancer patients, including those from equity-deserving groups. Despite the fact that cancer patients with intellectual and/or developmental disabilities experience worse outcomes than those without disabilities, this patient group has yet to be meaningfully incorporated into cancer advocacy research. This literature review offers a brief history of cancer advocacy research and inclusive research, followed by a discussion of how inclusive research can serve as a tool to facilitate and improve the involvement of people with intellectual and/or developmental disabilities in cancer research.</p> Recent Findings <p>Self-advocacy in cancer research has been growing over time, with frameworks emphasizing the importance of lived experience in conducting meaningful cancer research. However, such frameworks do not appear to offer strategies for increasing inclusion and accessibility to individuals with intellectual and/or developmental disabilities and others who may process and understand health information differently. Inclusive health research could serve as a useful map for improving the accessibility of cancer research; increasing the likelihood that people with intellectual and/or developmental disabilities are participants, advisors, or co-researchers in the work that involves them.</p> Summary <p>People with intellectual and/or developmental disabilities experience worse cancer outcomes than those without disabilities. While there has been a shift towards emphasizing patient-centred voices in cancer research, people with intellectual and/or developmental disabilities remain excluded from most cancer research that prioritizes lived experience. Future cancer research should explore how inclusive and accessible research can be used to empower people with intellectual and/or developmental disabilities in cancer research.</p>

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Narrowing the Gap in Cancer Care for Individuals with Intellectual and/or Developmental Disabilities: The Need to Prioritize Advocacy and Inclusion in Research for All People Diagnosed with Cancer

  • 期刊论文

  • 发表日期：

    2025年4月26日

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  • Rebecca L. W. Hansford

摘要

Purpose of Review

Advocacy has played a pivotal role in shaping and enhancing cancer research to more effectively and meaningfully consider outcomes that matter most to patients. Guidelines and frameworks for cancer advocacy have been developed to support cancer patients, including those from equity-deserving groups. Despite the fact that cancer patients with intellectual and/or developmental disabilities experience worse outcomes than those without disabilities, this patient group has yet to be meaningfully incorporated into cancer advocacy research. This literature review offers a brief history of cancer advocacy research and inclusive research, followed by a discussion of how inclusive research can serve as a tool to facilitate and improve the involvement of people with intellectual and/or developmental disabilities in cancer research.

Recent Findings

Self-advocacy in cancer research has been growing over time, with frameworks emphasizing the importance of lived experience in conducting meaningful cancer research. However, such frameworks do not appear to offer strategies for increasing inclusion and accessibility to individuals with intellectual and/or developmental disabilities and others who may process and understand health information differently. Inclusive health research could serve as a useful map for improving the accessibility of cancer research; increasing the likelihood that people with intellectual and/or developmental disabilities are participants, advisors, or co-researchers in the work that involves them.

Summary

People with intellectual and/or developmental disabilities experience worse cancer outcomes than those without disabilities. While there has been a shift towards emphasizing patient-centred voices in cancer research, people with intellectual and/or developmental disabilities remain excluded from most cancer research that prioritizes lived experience. Future cancer research should explore how inclusive and accessible research can be used to empower people with intellectual and/or developmental disabilities in cancer research.