Beyond the HIPAA Privacy Rule Enhancing Privacy, Improving Health Through Research (2009) / Chapter Skim
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Appendix B: Commissioned Survey Methodology
Appendix B: Commissioned Survey Methodology
Pages 293-300
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From page 293... ...
In consultation with committee members, the IOM took the unusual step of commissioning1 several surveys to assess current perceptions among health researchers of the effect of the Privacy Rule on research and to measure the public's perception of and expectations for privacy in health research. The first survey entailed a national web-based survey of U.S.
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From page 294... ...
These included the American Academy of Pediatrics, Section on Epidemiology; American College of Epidemiology; American College of Preventive Medicine; American Diabetes Association, Council on Epidemiology & Statistics; American Public Health Association, Epidemiology Section; International Genetic Epidemiology Society; International Society for Environmental Epidemiology; International Society for Pharmacoepidemiology; Society for Clinical Trials; Society for Epidemiologic Research; Society for Healthcare Epidemiology; Society for Pediatric and Perinatal Epidemiology; and Society for the Analysis of African-American Public Health Issues. Of 14 societies approached, the 13 listed above participated.
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From page 295... ...
These questions addressed issues such as the frequency of various types of data collection undertaken by respondents; changes in participant recruitment before and after the implementation of the Privacy Rule; frequency of IRB modifications secondary to Privacy Rule provisions and their effect; level of difficulty in obtaining deidentified data and waivers; familiarity with covered entities' opting out of research because of the Privacy Rule; studies conceived but not submitted to IRBs because of Privacy Rule concerns; and perceived effect of the Privacy Rule on patient confidentiality. Survey respondents were also asked about their gender, training, employment, and sources of funding.
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From page 296... ...
For analytic purposes, standard demographics for cross-tabulations were collected for region, age, generation, gender, race, party affiliation, education, income, marital status, children in the household, sexual orientation, disabilities, political philosophy, and employment. In addition, a set of custom health demographics was created from respondents' answers to questions about their overall health status, whether they have been caregivers, whether they have or have had six specified types of health conditions, and whether they have had a genetic test.
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From page 297... ...
SURVEY OF HMORN RESEARCHERS AND IRB ADMINISTRATORS Researcher Survey A Web-based survey was used to collect data about researchers' experience with the HIPAA Privacy Rule (e.g., how their research protocols may have been affected by HIPAA, knowledge of and attitudes toward the HIPAA Privacy Rule regulations, and limited demographic information)
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From page 298... ...
A total of 89 individuals completed the survey, and the remaining 118 individuals never responded to the invitations. The information obtained from the investigators included: • The degree to which a study protocol was affected by the HIPAA Privacy Rule; • Characteristics of the affected study; • Attitudes toward the HIPAA Privacy Rule provisions; • Specific structures or personnel created at their site to address HIPAA; • Studies considered, but not implemented due to real/perceived HIPAA-related concerns; • Open-ended "comments" fields to allow researchers to elaborate on their responses; • Select demographic items including number of years in research; • HMORN site membership; and • Request to contact researcher for follow-up interview if web survey answers warrant it.
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From page 299... ...
to ensure adherence to HIPAA Privacy Rule provisions • Approaches (e.g., training, new staff) established at the site to address HIPAA compliance • Specific type of HIPAA Privacy Rule–related training/education developed by the site's IRB • Sample scenarios of privacy breaches to see how each IRB would respond • Impact of HIPAA Privacy Rule on IRB process flow • Desired training/guidance from federal agencies specifically about the HIPAA Privacy Rule • Open-ended "comments" fields to allow respondents to elaborate on their responses
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From page 300... ...
2008. Impact of the HIPAA Privacy Rule in the HMO Research Network.
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