Our health care system is in a period of rapid and drastic change at both the state and national levels. While many of these changes will expand people's access to doctors and improve the system, new models of care and new approaches to keeping and disseminating health care information pose potential risks to patient privacy and public health. The NYCLU is vigorously monitoring these changes to ensure that patients' rights to privacy and autonomy are not compromised. Unless these basic rights are protected, our society will not fully realize the potential benefits of health care reform. Profound change in the organization of health information technology (HIT) is an area of particular concern. New York State has begun implementing a system of linked electronic health records in regions throughout the state. The U.S. Department of Health and Human Services has prioritized establishing an electronic health information exchange – a vast computerized network of medical records accessible to health care providers across the nation. These efforts could lead to improved care and greater efficiency. However, if patients lose control over how their medical information is shared, they may decline to participate in the system. Moreover, patients may shy away from treatment for sensitive conditions rather than see such information included in their medical records. Beginning in 2008, the NYCLU has worked to ensure that the implementation of electronic health information exchange in New York State respects the privacy of all patients, and, in particular, of special populations, including minors, people living with HIV/AIDS, and those seeking treatment for mental health conditions or substance use. Recently, the NYCLU has expanded this work to the federal level, addressing privacy concerns emerging from the rapid change in online health information technology. In September 2008, the New York Health Information Security and Privacy Collaboration (HISPC) circulated a draft white paper (PDF) setting forth polices and guidelines concerning the exchange of electronic health records in New York State. The NYCLU submitted comments calling for stronger privacy protections. In March 2009, the New York e-Health Collaborative issued the first set of policies and procedures (PDF) governing electronic health records and and health information exchange in New York State. The NYCLU submitted comments identifying numerous privacy concerns and suggesting alternative approaches. For more information on protecting privacy in the era of electronic health records, check out this PowerPoint presentation by NYCLU Senior Policy Counsel Corinne Carey.
- HISPC white paper, September 2008 (pdf) -NYCLU's comments (pdf)
- New York e-Health Collaborative policies and procedures, March 2009 (pdf) -NYCLU's comments (pdf)
- ACLU CLE on transition to electronic health records, July 2010 (PowerPoint Presentation)
- Fact Sheet: Electronic Health Records and Your Privacy (2010)