We’ve found the following reports and studies to be helpful tools for building a better understanding of the health privacy landscape.
- Alcoholism Drug Abuse Weekly, June 2014: This issue features coverage on 42 CFR Part 2. At issue is patient consent to release their alcohol and drug abuse treatment records.
- Circumvention of Security: Good Users Do Bad Things, Jim Blythe, Ross Koppel, and Sean W. Smith, October 2013
- Big Data: A Big Disappointment for Scoring Consumer Credit Risk, NCLC Report, March 2014
- The Underwhelming Benefits of Big Data, Paul Ohm, August 2013
- Concern About Security and Privacy JAMIA Study March 2014: Study shows concern about privacy and security, and the use of health information are related to withholding of health information from healthcare providers
- Virtual Hearing on Accounting for Disclosures: Patient Privacy Rights’ response to HIT Policy Committee’s Privacy and Security Tiger Team Office of the National Coordinator for Health IT, September 30, 2013. To view PFD of the hearing click HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures
- “The Case for Consent: Why it is Critical to Honor What Patients Expect: for Health Care, Health IT and Privacy.” by Patient Privacy Rights, August 2010
- Much Ado About Data Ownership, by Barbara J. Evans, Harvard Journal of Law & Technology, Vol. 25 (forthcoming 2011)
- Myths and Fallacies of “Personally Identifiable Information,” by Arvind Narayanan and Vitaly Shmatikov, Viewpoints, June 2010
- “Improve Privacy in Research by Eliminating Informed Consent? IOM Report Misses the Mark,” Journal of Law, Medicine, & Ethics, (2009): 507-512. Report by Mark A. Rothstein
- Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization, Paul Ohm, August 2009.
- HIMSS 2009 Security Survey : See how healthcare organizations are not so ready for privacy and security challenges.
- Data Hemorrhages in the Health-Care Sector, M. Eric Johnson, February 2009
- The 2008 Health Confidence Survey: Rising Costs Continue to Change the Way Americans Use the Health Care System – from Employee Benefit Research Institute (EBRI)
- Preserving The Right to Privacy Is Essential For Successful Health Care Reform, James C. Pyles, November 12, 2008
- GAO Report, June 2008 — Information Security: Federal Agency Efforts to Encrypt Sensitive Information Are Under Way, but Work Remains
- HIPAA Enforcement Statistics — Report from Health and Human Services’ Office of Civil Rights
- GAO Report: 6/18/08 — Privacy: Congress Should Consider Alternatives for Strengthening Protection of Personally Identifiable Information
- GAO Report: 2/14/08 — HIT: HHS Is Pursuing Efforts to Advance Nationwide Implementation, but Has Not Yet Completed a National Strategy
- NCVHS Report: 12/07 — Recommending that Americans have no control over any “secondary” uses of PHI
- SACGHS Draft Report: 11/5/07 — Oversight of Genetic Testing
- Altarum Study: 1/5/07 –A Review of the Personal Health Record (PHR) Service Provider Market: Privacy and Security
- Radio Frequency ID Devices in Humans — a report focusing on the ethical issues in the use of RFID chips
- Health Research Data for the Real World: The MarketScan Databases, Thomson Medstat, January 2006
- Two Papers by Latanya Sweeney on De-Identifying and Re-Identifying Data
- Information Explosion, 2001 — Examination of the tremendous growth in information being collected on individuals, Latanya Sweeney, Ph.D.