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.
This is a preview of subscription content, access via your institution
Relevant articles
Open Access articles citing this article.
-
Florida-California Cancer Health Equity Center (CaRE2) Community Scientist Research Advocacy Program
Journal of Cancer Education Open Access 29 August 2023
-
Putting patients first: development of a patient advocate and general practitioner-informed model of patient-centred care
BMC Health Services Research Open Access 20 March 2021
Access options
Subscribe to this journal
Receive 12 print issues and online access
$209.00 per year
only $17.42 per issue
Buy this article
- Purchase on Springer Link
- Instant access to full article PDF
Prices may be subject to local taxes which are calculated during checkout
References
American Heritage Dictionaries. The American Heritage College Dictionary 2nd Edn (Houghton Mifflin Company, Boston, 1983).
Ratain, M. J. et al. Critical role of Phase I clinical trials in cancer treatment. J. Clin. Oncol. 15, 853–859 (1997).
Chlebowski, R. T., Collyar, D. E., Somerfield, M. R. & Pfister, D. G. Technology assessment on breast cancer risk reduction strategies: tamoxifen and raloxifene. J. Clin. Oncol. 17, 1939–1955 (1999).
Redmond, K. Collaboration with patient advocates: unleashing a potent force. BJU Int. 91, 590 (2003).
Collyar, D. E. Breast cancer: a global perspective. J. Clin. Oncol. 19, 101–105 (2001).
Lasser, T. & Clarke, W. K. Reach to Recovery 158 (Simon & Schuster, New York, 1972).
Rollin, B. First, You Cry (Harper Collins, New York, 1976).
Kushner, R. & Doo, T. Why Me: What Every Woman Needs to Know about Breast Cancer to Save Her Life (Henry Holt & Company, New York, 1976).
Haran, C. The MAMM 50 who make a difference. MAMM Oct/Nov 44–53 (1998).
US Department of Defense. Department of Defense congressionally directed medical research programs Fact Sheet. Department of Defense breast cancer research program [online], <http://cdmrp.army.mil/pubs/factsheets/bcrpfactsheet.htm> (2004).
Cohen, S. M. Having a seat at the breast cancer research table: breaking down the barriers between advocates and scientists. Judges and Lawyers Breast Cancer Alert 3, 2 (1999).
Andejeski, Y. et al. Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research. J. Womens Health Gend. Based Med. 11, 119–136 (2002).
Cordes, C. Defense department wins praise for its research program on breast cancer. Chronicle of Higher Education A29 (19 Dec 1997).
Committee on the NIH Research Priority-Setting Process, Institute of Medicine. Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at the National Institutes of Health (National Academy, Washington, 1998).
Rich, I. M. et al. Perspective from the Department of Defense Breast Cancer Research Program. Breast Disease 10 (5–6), 33–45 (1998).
Goldberg, K. B. Clinical Biomarker Discovery Initiative would speed progress in early detection and measurement of response to therapy, Leland Hartwell tells NCI. The Cancer Letter 30 (43), 1–6 (2004).
Bazell, R. & King, M. C. HER-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer (Random House, New York, 1998).
Vasella, D. & Slater, R. Magic Cancer Bullet: How a Tiny Orange Pill May Rewrite Medical History (Harper Collins, New York, 2003).
Collyar, D. Advocates participate in NCI toxicity panel. Breast Cancer Action Newsletter 26 (1994).
Fintor, L. Patient input blossoms from seeds of SPORE grants. J. Natl Cancer Inst. 86, 658–660 (1994).
Collyar, D. From a night at the opera to a lasting partnership. Breast Cancer Action Newsletter 19 (1993)
Anderson, L. F. Issues raised on availability of breast cancer materials for research. J. Natl Cancer Inst. 86, 1580–1582 (1994).
Vanchieri, C. Patient advocates help researchers avoid bumps in the road. J. Natl Cancer Inst. 90, 1193–1195 (1998).
Collyar, D. E. The value of clinical trials from a patient perspective. Breast J. 5, 341–345 (2000).
Collyar, D. E. Patients win a place at the research top table. Cancer Futures 2, 270–271 (2003).
Barbin, W. Test of hope: cancer clinical trials (PBS Documentary; Newsweek Productions) [online], <http://www.aptonline.org/catalog.nsf/0/F9094CAF49DAF4CF85256C050053BB69?OpenDocument> (2002).
Millikan, R. C. et al. Genetic testing in breast cancer cooperative clinical trials — barriers and opportunities. Cancer Therapeutics 1.2, 95–99 (1998).
Collyar, D. E. & Blount-Lyon, R. The real world of breast cancer. The CALGAB 8, 4–5 (1999).
Blount-Lyon, R. Exploring the ethics of cancer research. The CALGAB 9, 4–6 (2000).
Partridge, A. H. et al. Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants. J. Natl Cancer Inst. 96, 629–632 (2004).
Demmy, T. et al. Managing accrual in cooperative group clinical trials. J. Clin. Oncol. 22, 2997–3002 (2004).
Goldberg, K. & Goldberg, P. Cooperative group system needs change in funding, review process, report says. The Cancer Letter 30, 1–8 (2004).
National Cancer Institute. Funding for strategic initiatives highlights research priorities. NCI Cancer Bulletin 1 (12), 1–2 (2004).
Zerhouni, E. The NIH Roadmap. Science 302, 63–64, 72 (2003).
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
Related links
Related links
DATABASES
Entrez Gene
National Cancer Institute
FURTHER INFO
American College Of Surgeons Oncology Group
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 Specialized Programs of Research Excellence
NIH Director's Council of Public Representatives
Research Advocacy Network Advocate SkillBuilders series
Rights and permissions
About this article
Cite this article
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
Issue Date:
DOI: https://doi.org/10.1038/nrc1530
This article is cited by
-
Aiding the Adoption of Master Protocols by Optimizing Patient Engagement
Therapeutic Innovation & Regulatory Science (2023)
-
Florida-California Cancer Health Equity Center (CaRE2) Community Scientist Research Advocacy Program
Journal of Cancer Education (2023)
-
Putting patients first: development of a patient advocate and general practitioner-informed model of patient-centred care
BMC Health Services Research (2021)
-
From Individuals to International Policy: Achievements and Ongoing Needs in Diabetes Advocacy
Current Diabetes Reports (2015)
-
The Long Island Breast Cancer Study Project
Nature Reviews Cancer (2005)