The HIPAA Paradox: The Privacy Rule That's Not

Sobel, Richard

doi:10.1353/hcr.2007.0062

Cited by 10 publications

(6 citation statements)

References 7 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…19 Although widely viewed as grossly inadequate, 19,20 the HIPAA Privacy Rule, effective in 2003, and the Security Rule, effective in 2005, mandated protections for patients' personal health information (PHI) and placed parameters around uses and disclosures of it without patient knowledge. 21 As a corrective, Congress passed Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009, which mandated more extensive regulation of disclosures of PHI.…”

Section: Introductionmentioning

confidence: 99%

Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care

Thompson

2016

Transgender Health

View full text Add to dashboard Cite

Purpose: In 2015, the Centers for Medicare and Medicaid Services ruled that health organizations comply with additional requirements for electronic health records (EHRs), known as “Meaningful Use,” and develop the capacity to collect gender identity data. Research has established effectiveness of a two-step gender identity question to collect these data. This study examines transgender patient perspectives on the use of a two-step question and experiences with privacy and sensitive disclosures in EHRs and healthcare settings.Methods: Four focus groups (N=30) were conducted in Chicago, Illinois in 2014–2015. Participants were asked to compare two intake forms—one with a two-step question and one with a single question—and discuss experiences with gender identity disclosure, privacy, and access to care. Narratives were transcribed verbatim to identify patterns and themes; the extended case method was used and grounded the data analysis process in the concept of intersectionality.Results: Participants expressed appreciation for improved reliability and competencies that the two-part question may afford. Narratives reveal concerns related to patient privacy, safety, and access because of the contexts in which these data are collected and transmitted. Virtually all participants described situations whereby sensitive gender identity information had been involuntarily disclosed, misinterpreted, or abused, and safety and care were compromised.Conclusion: Participants recognized the potential of the two-part question as a measurement and competency tool, but anticipated new privacy violations and involuntary disclosures. Narratives indicate that effects of sensitive disclosures may vary intersectionally, whereby white participants experienced lesser harms than their immigrant, HIV-positive, and black trans feminine counterparts. Discrimination and privacy violations may occur regardless of a two-part or one-part gender identity question, but increasing these sensitive disclosures within expanding EHR infrastructures may require a range of mechanisms that have flexibility across contexts to safeguard sensitive information and access to care.

show abstract

Section: Introductionmentioning

confidence: 99%

Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care

Thompson

2016

Transgender Health

View full text Add to dashboard Cite

show abstract

“…Canadian regulations require REC review for most such research, but acknowledge the social importance of the realisation of this type of research and its potential disruption by strict interpretations of the IC rule (CIhR et al, 1998(CIhR et al, /2005. In the USa, new regulations in relation to the health Insurance Portability and accountability act (hIPaa) have had a significant effect on the question of access to patient data and have been the subject of controversial discussion (armstrong et al, 2005;De Wolf et al, 2006a;Meslin, 2006;Ness, 2007;Sobel, 2007).…”

Section: ■ ■mentioning

confidence: 99%

Ethical Review and Children's Research in Ireland

Felzmann¹,

Sixsmith²,

O’Higgins³

et al. 2010

PsycEXTRA Dataset

View full text Add to dashboard Cite

show abstract

“…Publicizing information on medical outcomes involves a complex set of ethical issues in insuring that benefits to patients outweigh harm, while protecting patients' right to know, and respecting the privacy of their physicians (Gunderman, 1997;McPherson, 1994). Medical ethicists have applied their expertise to the problem of what is in the best interests of patients with a decided lack of agreement, while regulators appear to rush ahead where caution is advised (Having et al, 2008;Sobel, 2007). Here is one brief example of the possible consequences of unwittingly releasing individual performance data on physicians.…”

Section: Providing Performance Feedback To Physicians and Its Utilitymentioning

confidence: 99%

Bad Measures Don’t Make Good Medicine: The Ethical Implications of Unreliable and Invalid Physician Performance Measures

Labig

2008

J Bus Ethics

View full text Add to dashboard Cite

show abstract

The HIPAA Paradox: The Privacy Rule That's Not

Cited by 10 publications

References 7 publications

Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care

Patient Perspectives on Gender Identity Data Collection in Electronic Health Records: An Analysis of Disclosure, Privacy, and Access to Care

Ethical Review and Children's Research in Ireland

Bad Measures Don’t Make Good Medicine: The Ethical Implications of Unreliable and Invalid Physician Performance Measures

Contact Info

Product

Resources

About