TABLE 5-1Summary of Relevant Surveys

Survey Year Survey Participants Response Ratea
Association of American Medical Colleges 2003 Targeted investigators, institutional review board (IRB) personnel, privacy officials, research administrators, and deans 331 respondentsb
National Cancer Advisory Board 2003 Individuals suggested from cancer center directors, clinical cooperative group chairs, and principal investigators of Special Programs of Research Excellence 39% (89/226)
Agency for Healthcare Research and Quality 2004 16 health services researchers, and 17 privacy officers, research compliance officers, and IRB directors 77% (33/43)
National Survey of Epidemiologists 2007 Professional members of 13 epidemiological societies 1,527 respondentsc
HMO Research Network (HMORN): survey of investigators 2008 Scientists working in the 15 HMORN research centers 43% (89/235)
HMORN: survey of IRB administrators 2008 IRB administrators at the 15 HMORN research centers 73% (11/15)
AcademyHealth 2007 Professional members of AcademyHealth 396 respondentsd
American Heart Association/American College of Cardiology 2007 Professional members of the American Heart Association and the American College of Cardiology 656 respondentse
North American Association of Central Cancer Registries 2006 Membership of the North American Association of Central Cancer Registries 66% (47/77)
American Society for Clinical Oncology 2008 27 compliance officials and investigators from 13 institutions 27 respondents (structured interviews)
Association of Academic Health Centers 2007 Researchers and compliance personnel from 5 institutions 5 focus groups
Total Number of Responses from All Entities 3,211 respondents
a

Where the data are available, the response rate includes the number of survey respondents divided by the total number of individuals invited to participate in the survey.

b

The total number of individuals invited to complete this survey is unknown.

c

The epidemiological societies e-mailed the survey to 10,347 e-mail addresses. However, a substantial number of epidemiologists belong to more than one organization, and as a result it is impossible to calculate a response rate. Also, only those members who had submitted an application to an IRB since the Privacy Rule was implemented met the criteria for inclusion in the analysis.

d

All 3,461 AcademyHealth members were invited to participate in the survey, but only members who were principal investigators met the criteria for inclusion in the survey analysis. Calculating a response rate was impossible because the total number of eligible survey participants was unknown.

e

All 18,261 professional members of the American Heart Association and the American College of Cardiology were invited to complete this survey. Many of these members are practicing physicians, not researchers, and thus were not the intended audience for the survey. As a result, it was impossible to calculate the total number of eligible individuals invited to participate in the survey, or the response rate.

From: 5, Effect of the HIPAA Privacy Rule on Health Research

Cover of Beyond the HIPAA Privacy Rule
Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research.
Institute of Medicine (US) Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule; Nass SJ, Levit LA, Gostin LO, editors.
Washington (DC): National Academies Press (US); 2009.
Copyright © 2009, National Academy of Sciences.

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