ArticleAmerican journal of epidemiology2010
Heightened attention to medical privacy: challenges for unbiased sample recruitment and a possible solution.
Article in American journal of epidemiology, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
15 citing papers in PubMed.
- Trial
- Clinical management and burden of bipolar disorder: a multinational longitudinal study (WAVE-bd study).BMC psychiatry · 2011Trial
- Integrating Environmental Data with Medical Data in a Records-Linkage System to Explore Groundwater Nitrogen Levels and Child Health Outcomes.International journal of environmental research and public health · 2023Article
- Practical application of opt-out recruitment methods in two health services research studies.BMC medical research methodology · 2017Article
- The interplay between hospital and surgeon factors and the use of sentinel lymph node biopsy for breast cancer.Medicine · 2016Observational
- Reexamining the Relationship of Breast Cancer Hospital and Surgical Volume to Mortality: An Instrumental Variable Analysis.Medical care · 2015Observational
- An algorithm to identify the development of lymphedema after breast cancer treatment.Journal of cancer survivorship : research and practice · 2015Article
- Quality of life among a population-based cohort of older patients with breast cancer.Breast (Edinburgh, Scotland) · 2014Article
- Article
- Diagnosis and treatment of lymphedema after breast cancer: a population-based study.PM & R : the journal of injury, function, and rehabilitation · 2013Article
- History of the Rochester Epidemiology Project: half a century of medical records linkage in a US population.Mayo Clinic proceedings · 2012Review
- Fracture risk and adjuvant hormonal therapy among a population-based cohort of older female breast cancer patients.Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA · 2011Article
- Socioeconomic and racial differences in treatment for breast cancer at a low-volume hospital.Annals of surgical oncology · 2011Article
- Use of a medical records linkage system to enumerate a dynamic population over time: the Rochester epidemiology project.American journal of epidemiology · 2011Article
- Socioeconomic factors associated with adjuvant hormone therapy use in older breast cancer survivors.Cancer · 2011Article
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6 authors.
Funding
Abstract
Subject recruitment for epidemiologic studies is associated with major challenges due to privacy laws now common in many countries. Privacy policies regarding recruitment methods vary tremendously across institutions, partly because of a paucity of information about what methods are acceptable to potential subjects. The authors report the utility of an opt-out method without prior physician notification for recruiting community-dwelling US women aged 65 years or older with incident breast cancer in 2003. Participants (n = 3,083) and possibly eligible nonparticipants (n = 2,664) were compared using characteristics derived from billing claims. Participation for persons with traceable contact information was 70% initially (2005-2006) and remained over 90% for 3 follow-up surveys (2006-2008). Older subjects and those living in New York State were less likely to participate, but participation did not differ on the basis of socioeconomic status, race/ethnicity, underlying health, or type of cancer treatment. Few privacy concerns were raised by potential subjects, and no complaints were lodged. Using opt-out methods without prior physician notification, a population-based cohort of older breast cancer subjects was successfully recruited. This strategy may be applicable to population-based studies of other diseases and is relevant to privacy boards making decisions about recruitment strategies acceptable to the public.
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