50 Free Resources to Learn About Medical Privacy

Electronic Health Records (EHRs), online health services and tools that help manage healthcare online all raise questions about medical privacy. This list of 50 free resources to learn about medical privacy, from information about personal health records to organizations that advocate for the patient, can help you learn more about why these privacy issues are such a concern.

Personal Health Records

  1. Electronic Patient ChartElectronic Health Records (EHR): The American Recovery and Reinvestment Act of 2009 contains financial incentives for eligible physicians that use qualified EHR. The Medical Group Management Association stays on top of the requirements.
  2. Electronic Medical Records, Electronic Health Records: Open Clinical offers a wealth of information about EMR and EHR developments.
  3. Information Sharing and Privacy with Personal Medical Records [PDF]: This report summarizes the theoretical underpinnings of a model of patient data flow.
  4. Keep It With You: Personal Medical Information Form: The CDC (Centers for Disease Control) offers directions on how to safeguard your medical records during an emergency situation.
  5. Keeping a Personal Medical Records File: The Mesothelioma group provides information about how to keep a personal medical records file.
  6. myPHR: This site is a service offered by the American Health Information Management Association (AHIMA) to learn more about personal health records.
  7. New National Survey Finds Personal Health Records Motivate Consumers to Improve Their Health: This recent article states that tools to help people manage their health still are not widely used.
  8. Personal Health Records: MedlinePlus offers a section devoted to personal health records, also called EHR, or Electronic Health Records.
  9. Personal Health Records (PHR): Medicare.gov offers information about PHRs and how to create one.
  10. The Value of Personal Health Records [PDF]: This online brocure tackles all the right reasons to maintain personal health records.

Medical Record Privacy

  1. Typhoid InoculationHealth Privacy: The Center for Democracy and Technology offers a thorough look at HIT (Health Information Technology) and HIPAA (Health Insurance Portability and Accountability Act).
  2. HHS Announces Proposed HIPAA Rule: This recent article defines the proposed rule.
  3. Medical Privacy: The ACLU (American Civil Liberties Union) provides news about the inadequacies within medical information keeping.
  4. Medical Record Privacy: This document, created by Epic (Electronic Privacy Information Center), focuses public attention on emerging and civil liberties issues in the medical record debate.
  5. Medical Records Privacy: The Privacy Rights Clearinghouse provides concise information about the issue of medical records privacy.
  6. Preserving Patient Confidentiality in the Era of Information Technology [PDF]: The developments in information technologies and systems pose challenges to psychiatrists, health care entities, and
    policy makers to adopt appropriate rules to protect patient privacy.
  7. Privacy Protection and Identity Theft – Medical Privacy: The Consumer Action Website offers resources to learn more about medical privacy.
  8. Stitching Up Health Records: Privacy Compliance Lags: Twenty percent of health care companies are unable or unwilling to implement federal privacy requirements, because the rules are vague and the technology is spotty.
  9. Who’s Keeping an Eye on Your Online Health Records? Google, Microsoft and other providers of Web-based services for managing health care information promise to keep it secure, but privacy policies vary from site to site.

Medical Identity Theft

  1. Correcting Misinformation on Medical Records: The Identity Theft Resource Center offers this fact sheet on medical identity theft.
  2. Data Breaches and Medical identity Theft on the Rise: This article, provided by HealthcareTechnologyNet, provides insight into this problem.
  3. Medical Identity Theft: The Federal Trade Commission offers information and resources to prevent and remedy medical identity theft.
  4. Medical identity theft: This article, provided by the Coalition Against Insurance Fraud, provides popular scams and solutions.
  5. Medical Identity Theft & Medicare Fraud: This information is offered by the U.S. Department of Health & Human Services Office of Inspector General.
  6. Medical Identity Theft: It Can Kill — What Every Consumer Needs to Know: The Wisconsin Department of Agriculture, Trade & Cosumer Protection offers some solid advice.
  7. Medical Identity Theft Web site: Use this site to learn more about prevention, resources and expert advice about medical ID theft.
  8. Medical Identity Theft: How to Protect Yourself: This story from ABC Good Morning America is enlightening and informative.
  9. The Medical Identity Theft Information Page: The World Privacy Forum offers resources for readers to help avoid medical identity theft.

Know Your Rights

  1. Breaches of Doctor-Patient Confidentiality: This site contains links to information that ranges from informed consent to failed diagnosis and gross negligence.
  2. Center for Medical Consumers: This site is committed to broadening public awareness about the safety and quality problems that pervade America’s medical care.
  3. HIPAA, HiTech & HIT: This law office covers legal issues, developments and other pertinent information relating to electronic health records, or EHR.
  4. Medical Records: The ‘Lectric Law Library offers a brief and easy-to-understand rundown on medical record privacy and the law.
  5. Medical records: Disclosing confidential clinical information: The Psychiatrist offers insight into patient confidentiality and the law.
  6. Patient Access to Medical Records: This report identifies and explains state law on patient access to medical records in a question and answer format.
  7. Patient-Centered Guides: Use this site to learn more about your rights and about other resources geared specifically toward certain diseases.
  8. Self-Help Group Sourcebook Online: This guide has been developed to act as your starting point for finding every type of online self-help support group that is available.
  9. Smart Patient Guide: Family Doctor offers numerous guides for patients to learn how to manage healthcare.
  10. Speak Up Initiatives: The Joint Commission provides “Speak Up” information for patients to help them talk with medical professionals.
  11. Thomas, Legislative Information on the Internet: Information from the United States Congress on the latest legislative activity, provided in a searchable format by the Library of Congress.


  1. American Academy of Family Physicians: The AAFP offers a variety of information about public policy, including patient confidentiality.
  2. American College of Physicians: ACP Committees are involved in policy development, education, career development, and more.
  3. American Health Information Management Association: AHIMA is a health information management (HIM) professional association over 59,000 members strong.
  4. American Medical Association: AMA members nationwide are committed to the highest standards in patient care, practice management and professionalism.
  5. Medical Information Bureau: MIB is a data bank used by insurance companies. Use the “consumers” tab at top to learn more about your privacy.
  6. National Mental Health Consumers’ Self-Help Clearinghouse: This is the nation’s first national consumer technical assistance center.
  7. National Patient Advicate Foundation: NPAF is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.
  8. Office for Civil Rights: Civil Rights help to protect you from unfair treatment or discrimination, because of your race, color, national origin, disability, age, sex (gender), or religion.
  9. Patient Advocate Foundation: You can find professional case managers and attorneys here who advocate on behalf of patients experiencing numerous issues.
  10. Public Citizen Health and Safety: Public Citizen’s work in health and safety has focused on protecting consumers by advocating for stronger physician accountability.
  11. PULSE: Persons United Limiting Substandards and Errors works to improve patient safety and to reduce the rate of medical errors using real life stories and experiences.

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