by Chris Cooke

(Editor's Note: Chris Cooke is a totally blind naturopathic physician.)

Is your information really private? What challenges do you face as a visually impaired consumer? Congress enacted HIPAA, the Health Information Portability Authorization Act, to safeguard patients protected health information. As yet, it has not addressed the privacy of visually impaired patients whose information is often not all that private. In this article, Ill talk about what HIPAA is and what your patient rights are under this act. In the next article, Ill talk about ways to lobby for access to your own health information, and ways to make your experience filling out forms more accessible and confidential.

Medical professionals are required to keep your private health information secure. What qualifies as Protected Health Information (PHI)? This includes identifying information such as name, Social Security number, birth date, address, phone numbers, health or medical record number, e-mail address, and photo ID. This is anything that would potentially connect you with the health information in question. It can be disclosed:

- When you ask for a copy, and you have the right to receive one;

- For the purposes of treatment, payment, health care operations, or research;

- For mandatory reporting in the case of certain diseases, for instance;

- With an authorization signed by you for the purposes of research.

You have the right to:

- Inspect your protected information (held in the designated record set) and receive a copy of it;

- Request amendments to your PHI (held in the designated record set);

- Request restrictions of the uses and disclosures of your PHI;

- Request copies of your PHI via alternative means (fax, e-mail) or at alternate locations (home, office);

- Obtain a list of who has received disclosures of protected health information made in the last six years; and

- Receive a notice of the medical providers privacy practices.

This last set of rights poses special challenges for those who cannot easily read and examine health information. Did you know that your medical provider has a HIPAA privacy policy? You have probably signed it without fully knowing what it says. For this reason, it is good to know about your protected health information and your rights to access.

Have you gone to a doctors appointment and encountered forms that were not in an accessible format? Did you have to give your information to someone in a public place and found that uncomfortable? Perhaps you have wondered about your health record, test results, and how to access these as a visually impaired patient.

Stay tuned for the next article where we'll explore ways of navigating these challenges.

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