APPENDIX F: A Short Course on Medical Privacy

Protecting privacy in health care is important. You must have some degree of control about who sees your health information so that you can confide in your doctors — so that you can provide them with all of the information they need to make good decisions about your care. If you are selective about the information you provide to your doctor and do not tell her facts about you that make you vulnerable — your emotional state, other drugs you are taking — you undermine your own chances of getting the best care for you.

You have the right to make decisions about who knows and who doesn't know about your condition. You may want the support that comes with telling friends and colleagues about your condition. Or you may want to present yourself as someone who doesn't have MS or AIDS. This is your choice.

Part of making it your choice is exercising these options about privacy. To begin with, you need to know what your basic privacy rights are under Health Insurance Portability and Accountability Act (HIPAA.)

Sample Resources:

HIPAA information is available at the Department of Health and Human Services Web site or by calling the Office of Civil Rights toll-free hotline at (800) 368-1019.

The Privacy Project is the single most consumer-friendly resource about the privacy of medical information.
(202) 637-9800 (ask to speak to a health information privacy expert)

Privacy Rights Clearinghouse is a nonprofit consumer organization that has compiled an extensive list of frequently asked questions about HIPAA, what the legal language means in plain English and how to protect your medical information.

This information was last updated June 2010 and will be updated every six months. A more complete list of information and resources are available in the book Aftershock and on the Prepared Patient Forum.

UPDATED JUNE 2010

Updated URLS:

Medical Information Bureau (MIB) (p. 234)
NEW URL: http://www.mib.com/index.html