156
Views
1
CrossRef citations to date
0
Altmetric
Articles

Examining Physician Interactions with Disease Advocacy Organizations

, , &

References

  • Abola, Matthew V., and Vinay Prasad. 2016. Industry funding of cancer patient advocacy organizations. Mayo Clinic Proceedings 91 (11):1668–70. doi: 10.1016/j.mayocp.2016.08.015.
  • Aymé, Ségolène, Anna Kole, and Stephen Groft. 2008. Empowerment of patients: Lessons from the rare diseases community. The Lancet 371 (9629):2048–51. doi: 10.1016/S0140-6736(08)60875-2.
  • Boon, Wouter, and Ria Broekgaarden. 2010. The role of patient advocacy organisations in neuromuscular disease R&D: The case of the Dutch neuromuscular disease association VSN. Neuromuscular Disorders 20 (2):148–51. doi: 10.1016/j.nmd.2009.10.012.
  • Cho, Y. I., T. P. Johnson, and J. B. Vangeest. 2013. Enhancing surveys of health care professionals: A meta-analysis of techniques to improve response. Evaluation & the Health Professions 36 (3):382–407. doi: 10.1177/0163278713496425.
  • Deal, Linda S., Jonathan C. Goldsmith, Susan Martin, Ann J. Barbier, Steven L. Roberds, and David H. Schubert. 2017. Patient voice in rare disease drug development and endpoints. Therapeutic Innovation &Amp; Regulatory Science 51 (2):257–63. doi: 10.1177/2168479016671559.
  • Earnest, Mark A., Shale L. Wong, and Steven G. Federico. 2010. Perspective: Physician advocacy: What is it and how do we do it? Academic Medicine 85 (1):63–7. doi: 10.1097/ACM.0b013e3181c40d40.
  • Gallin, Elaine K., Enriqueta Bond, Robert M. Califf, William F. Crowley, Pamela Davis, Richard Galbraith, and E. Albert Reece. 2013. Forging stronger partnerships between academic health centers and patient-driven organizations. Academic Medicine: Journal of the Association of American Medical Colleges 88 (9):1220–24. doi: 10.1097/ACM.0b013e31829ed2a7.
  • Gruen, R. L., E. G. Campbell, and D. Blumenthal. 2006. Public roles of us physicians: Community participation, political involvement, and collective advocacy. JAMA 296 (20):2467–75. doi: 10.1001/jama.296.20.2467.
  • Gruen, R. L., S. D. Pearson, and T. A. Brennan. 2004. Physician-citizens: public roles and professional obligations. JAMA 291 (1):94–8. doi: 10.1001/jama.291.1.94.
  • Hagan, T. H., M. Rosenzweig, K. Zorn, J. van Londen, and H. Donovan. 2017. Perspectives on self-advocacy: Comparing perceived uses, benefits, and drawbacks among survivors and providers. Oncology Nursing Forum 44 (1):52–9. doi: 10.1188/17.ONF.52-59.
  • Hall, J. G. 2013. The role of patient advocacy/parent support groups. South African Medical Journal 103 (12):1020–22. doi: 10.7196/SAMJ.6976.
  • Huehnergarth, Nancy Fink. 2016. Has epipen price Gouger Mylan silenced allergy advocates? Forbes. https://www.forbes.com/sites/nancyhuehnergarth/2016/08/25/has-epipen-price-gouger-mylan-silenced-allergy-advocates/#51fce6b7497f.
  • Institute of Medicine. 2010. Advocacy group approaches to accelerating research and product development: Illustrative examples. In Rare Diseases and Orphan Products: Accelerating Research and Development, edited by Marilyn J. Field and Thomas F. Boat, 371–86. Washington, DC: The National Academies Press.
  • Keller, Ann C., and Laura Packel. 2014. Going for the cure: Patient interest groups and health advocacy in the United States. Journal of Health Politics, Policy & Law 39 (2):331–67. doi: 10.1215/03616878-2416238.
  • Klein, Marnie. 2017. Masked marketing: Pharmaceutical company funding of ADHD patient advocacy groups. Bioethics Forum. https://doi.org/https://www.thehastingscenter.org/masked-marketing-pharmaceutical-company-funding-adhd-patient-advocacy-groups/.
  • Koay, Pei P., and Richard R. Sharp. 2013. The role of patient advocacy organizations in shaping genomic science. Annual Review of Genomics and Human Genetics 14 (1):579–95. doi: 10.1146/annurev-genom-091212-153525.
  • Landy, David C., Margaret A. Brinich, Mary Ellen Colten, Elizabeth J. Horn, Sharon F. Terry, and Richard R. Sharp. 2012. How disease advocacy organizations participate in clinical research: A survey of genetic organizations. Genetics in Medicine 14 (2):223–8. doi: 10.1038/gim.0b013e3182310ba0.
  • Martin, Shelley. 2004. Younger physicians, specialists use Internet more. Canadian Medical Association Journal 170 (12):1780. doi: 10.1503/cmaj.1040621.
  • McCoy, Matthew S., Michael Carniol, Katherine Chockley, John W. Urwin, Ezekiel J. Emanuel, and Harald Schmidt. 2017. Conflicts of Interest for patient-advocacy organizations. New England Journal of Medicine 376 (9):880–85. doi: 10.1056/NEJMsr1610625.
  • Oberg, Charles N. 2003. Pediatric advocacy: Yesterday, today, and tomorrow. Pediatrics 112 (2):406–9. doi: 10.1542/peds.112.2.406.
  • Panofsky, A. 2011. Generating sociability to drive science: Patient advocacy organizations and genetics research. Social Studies of Science 41 (1):31–57. doi: 10.1177/0306312710385852.
  • Pauer, Frédéric, Svenja Litzkendorf, Jens Göbel, Holger Storf, Jan Zeidler, and Johann-Matthias Graf von der Schulenburg. 2017. Rare diseases on the internet: An assessment of the quality of online information. Journal of Medical Internet Research 19 (1):e23. doi: 10.2196/jmir.7056.
  • Polich, Ginger R. 2012. Rare disease patient groups as clinical researchers. Drug Discovery Today 17 (3-4):167–72. doi: 10.1016/j.drudis.2011.09.020.
  • Read, J., and A. Cain. 2013. A literature review and meta-analysis of drug company–funded mental health websites. Acta Psychiatrica Scandinavica 128 (6):422–33. doi: 10.1111/acps.12146.
  • Rose, Susannah L., Janelle Highland, Matthew T. Karafa, and Steven Joffe. 2017. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Internal Medicine 177 (3):344–50. doi: 10.1001/jamainternmed.2016.8443.
  • Rose, Susannah L. 2013. Patient advocacy organizations: Institutional conflicts of interest, trust, and trustworthiness. The Journal of Law, Medicine & Ethics 41 (3):680–87. doi: 10.1111/jlme.12078.
  • Sharp, R. R., and D. C. Landy. 2010. The financing of clinical genetics research by disease advocacy organizations: A review of funding disclosures in biomedical journals. American Journal of Medical Genetics Part A 152A (12):3051–56. doi: 10.1002/ajmg.a.33767.
  • Smith, Sophia K., Wendy Selig, Matthew Harker, Jamie N. Roberts, Sharon Hesterlee, David Leventhal, Richard Klein, Bray Patrick-Lake, and Amy P. Abernethy. 2015. Patient engagement practices in clinical research among patient groups, industry, and academia in the United States: A survey. PLoS ONE 10 (10):e0140232. doi: 10.1371/journal.pone.0140232.
  • Terry, Sharon F., Patrick F. Terry, Katherine A. Rauen, Jouni Uitto, and Lionel G. Bercovitch. 2007. Advocacy groups as research organizations: The PXE International example. Nature Reviews: Genetics 8 (2):157–64. doi: 10.1038/nrg1991.
  • The Autistic Self Advocacy Network, The Association for Autistic Community, Autism Women’s Network, Association of Programs for Rural Independent Living, Autism National Committee, Asperger’s Association of New England, National Council on Independent Living, National Coalition on Mental Health Recovery, Little People of America, Self-Advocates Becoming Empowered (SABE), Not Dead Yet, Ollibean, TASH, The Thinking Person’s Guide to Autism, Queerability, Michigan Disability Rights Coalition, PACLA, Down Syndrome Uprising, YOUTH POWER!, Education DREAM: Disability Rights, Activism, and Mentoring, Taishoff Center for Inclusive Higher Education, I Am Norm, We Are Like Your Child, The Unpuzzled Project, Autism Rights Group Highland, and Autism Acceptance Day. 2014. 2014 Joint Letter to the Sponsors of Autism Speaks. Autistic Self Advocacy Network. https://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/.
  • Wood, Jill, Lori Sames, Allison Moore, and Sean Ekins. 2013. Multifaceted roles of ultra-rare and rare disease patients/parents in drug discovery. Drug Discovery Today 18 (21–22):1043–51. doi: 10.1016/j.drudis.2013.08.006.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.