204533 Has FERPA, the school privacy law (a.k.a. the "Buckley amendment"), affected epidemiologists?

Monday, November 9, 2009

Stanley H. Weiss, MD, FACP, FACE , Department of Preventive Medicine & Community Health / Epidemiology, UMDNJ - New Jersey Medical School & New Jersey School of Public Health, Newark, NJ
James A. Gaudino, MD, MS, MPH, FACPM , Public Health Division, Immunization Program and Oregon HPV Impact Project, Department of Human Services, State of Oregon and APHA Epidemiology Section, Portland, OR
Elquemedo Oscar Alleyne, MPH , Epidemiology, Rockland County Department of Health, Pomona, NY
Melissa Quick , Cornell University and UMDNJ-NJMS, Maplewood, NJ
Roberta B. Ness, MD MPH , Dean, University of Texas School of Public Health, Houston, TX
John Middaugh, MD , Director of Community Health, Southern Nevada Health District, Las Vegas, NV
Daniel M. Rosenblum, PhD , Department of Preventive Medicine and Community Health, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, NJ
When FERPA - the Family Educational Rights and Privacy Act - is mentioned to epidemiologists, many ask "What's that?" while others commiserate about problems. (In lay terms, FERPA's called the “Buckley Amendment.”) Invitations for a web-based survey concerning HIPAA were sent in early 2007 to all members of 13 epidemiology societies, including the APHA Epidemiology Section. We also inquired about FERPA, which governs the privacy of certain records of minors and students. 1219 persons (59% F) accessed the web-site and completed all of the FERPA and demographic questions. For 499, at least some of their work involved “educational or health related assessments involving educational institutions.” However, not even all of these appeared to know about FERPA. Overall, 358 had no experience with FERPA, 500 didn't know, and 46 didn't answer the question. Only 289 (24%) of the respondents indicated that they had at least some experience with FERPA. Among these, 25% (71/281) had encountered an educational institution unwilling to participate in their research due to FERPA. 35% (100/287) responded that FERPA had caused delays or presented barriers to public health practice, with the highest rate among those who worked for government (46%) and the lowest among NGO's (13%). In summary, a majority of epidemiologists appear to be ignorant about FERPA, including many who work with study populations where these regulations may potentially apply. Among those knowledgeable about FERPA, many have experienced delays or inability to implement studies. There is a need to re-examine the FERPA regulations, relative costs/benefits, and implementation.

Learning Objectives:
1. What is FERPA? 2. In general, how knowledgeable about FERPA are epidemiologists? 3. Have epidemiologists experienced problems related to FERPA?

Keywords: Regulations, Policy/Policy Development

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Immediate past chair of the APHA Epidmeiology Section; vice-chair (and chair-elect) of the Joint Policy Committee of the Societies of Epidemiology; member of APHA Science Board. Professor of Preventive Medicine and Community Health at UMDNJ-NJMS and Professor of Quaatitative Methods, UMDNJ School of Public Health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.