Heightened attention to medical privacy: challenges for unbiased sample recruitment and a possible solution. Am J Epidemiol 2010 Sep 15;172(6):637-44
Date
07/28/2010Pubmed ID
20660123Pubmed Central ID
PMC3025645DOI
10.1093/aje/kwq220Scopus ID
2-s2.0-77956914255 (requires institutional sign-in at Scopus site) 28 CitationsAbstract
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.
Author List
Nattinger AB, Pezzin LE, Sparapani RA, Neuner JM, King TK, Laud PWAuthors
Purushottam W. Laud PhD Professor in the Institute for Health and Equity department at Medical College of WisconsinAnn B. Nattinger MD, MPH Associate Provost, Professor in the Medicine department at Medical College of Wisconsin
Joan Neuner MD, MPH Professor in the Medicine department at Medical College of Wisconsin
Liliana Pezzin PhD, JD Professor in the Institute for Health and Equity department at Medical College of Wisconsin
Rodney Sparapani PhD Associate Professor in the Institute for Health and Equity department at Medical College of Wisconsin
MESH terms used to index this publication - Major topics in bold
AgedAged, 80 and over
Breast Neoplasms
Cohort Studies
Confidentiality
Data Collection
Epidemiologic Studies
Female
Health Insurance Portability and Accountability Act
Humans
Insurance Claim Review
Medicare
Patient Selection
Residence Characteristics
Socioeconomic Factors
United States
