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How have patient advocates in the United States benefited cancer research?

Abstract

Cancer patient advocates represent those affected by cancer and have a broad view of cancer research. They are involved in many diverse cancer research committees, where they can help tackle old problems from new perspectives that often differ from government, academic, medical and scientific approaches. In this role, patient advocates have aided the development of educational dialogue between investigators and patient communities and assisted in streamlining cancer research policies and clinical trials.

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Figure 1: The world of cancer patient advocacy.
Figure 2: Patient advocate backgrounds.

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Acknowledgements

I would like to thank E. Pred, M. Nelson, G. Buffleben, S. Eisenbarth, H. Smith, E. Nealon, Y. Andejeski, S. Robertson and others who have inspired us during their lives and deaths. I also thank CALGB, the UCSF breast SPORE and Advocacy Core, and the Organ Systems Branch for collaborations.

Author information

Authors and Affiliations

Authors

Related links

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DATABASES

Entrez Gene

BRCA1

National Cancer Institute

breast cancer

FURTHER INFO

American College Of Surgeons Oncology Group

Breast Cancer Action

California Breast Cancer Research Program

CNCCG's interactive self-study guide on clinical trials

Coalition of National Cancer Cooperative Groups, Inc.

Consumer Advocates in Research and Related Activities

DoD Congressionally Directed Medical Research Programs

European Organisation for Research and Treatment of Cancer

FDA Patient Representative Program

National Alliance of Breast Cancer Organizations

National Breast Cancer Coalition

National Cancer Institute of Canada

NCI's advocacy training for CARRA members

NCI National Cancer Advisory Board

NCI Board of Scientific Counsellors

NCI Science Behind the News

NCI Specialized Programs of Research Excellence

NIH Director's Council of Public Representatives

Project LEAD

Research Advocacy Network Advocate SkillBuilders series

SPORE PART Program web site

Susan G. Komen Breast Cancer Foundation

The Rose Kushner Breast Cancer Advisory Centre

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Collyar, D. How have patient advocates in the United States benefited cancer research?. Nat Rev Cancer 5, 73–78 (2005). https://doi.org/10.1038/nrc1530

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