Thursday, 20 October 2011

18 Unique Identifiers You Want To Avoid (or 3, if you were here in the equator)

From the Health Insurance Portability and Accountability Act (HIPAA).

The following are 18 unique identifiers that you want to avoid when publishing case reports, stories, anecdotes, anything that concern specific individuals, especially patients.

1. Names;
2. All geographical subdivisions smaller than a State, including street address, city, county, precinct, zip code, and their equivalent geocodes, except for the initial three digits of a zip code, if according to the current publicly available data from the Bureau of the Census: (1) The geographic unit formed by combining all zip codes with the same three initial digits contains more than 20,000 people; and (2) The initial three digits of a zip code for all such geographic units containing 20,000 or fewer people is changed to 000;
3. All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, date of death; and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older;
4. Phone numbers;
5. Fax numbers;
6. Electronic mail addresses;
7. Social Security numbers;
8. Medical record numbers;
9. Health plan beneficiary numbers;
10. Account numbers;
11. Certificate/license numbers;
12. Vehicle identifiers and serial numbers, including license plate numbers;
13. Device identifiers and serial numbers;
14. Web Universal Resource Locators (URLs);
15. Internet Protocol (IP) address numbers;
16. Biometric identifiers, including finger and voice prints;
17. Full face photographic images and any comparable images; and
18. Any other unique identifying number, characteristic, or code (note this does not mean the unique code assigned by the investigator to code the data)
There are also additional standards and criteria to protect individual's privacy from re-identification. Any code used to replace the identifiers in datasets cannot be derived from any information related to the individual and the master codes, nor can the method to derive the codes be disclosed. For example, the unique code cannot include the last four digits (in sequence) of the social security number. Additionally, the researcher must not have actual knowledge that the research subject could be re-identified from the remaining identifiers in the PHI used in the research study. In other words, the information would still be considered identifiable is there was a way to identify the individual even though all of the 18 identifiers were removed.

A bit of a cultural perspective:

As a medical student now doing clerkship, I am well aware of the rules on patient privacy. I'm not sure if my country's medical council / boards has this kind of list that explicitly states which items are not for public consumption. Maybe we rely much on conscience? [It works, though!] After all, not a lot of these stuff are relevant to the average Indonesians. Items #4 down to #18 are certainly irrelevant. Well, item #8 is acceptable, but trust me, nobody here cares or understands what it means save for health professionals. Those who know their rights come from medium-upper class society, and this community constitutes around... uh, I dunno, less than 50% of the entire population. Possibly much less.

In other words, we can say that most of these patients are practically invisible. I daresay, if a careless / delinquent / just plain evil med student sells away a piece of patient's information, as long as the patient comes from a lower class / is uneducated / is not a public figure, the med student can easily evade lawsuit. Heck, the patient himself would be too [forgive me] "unenlightened", to understand his own rights, let alone to sue!

This is the phenomenon that exists in a developing country with one of the densest population in the world. If you are lucky enough to be born or to live somewhere where all its citizens actually exist and are busy defending their rights to death, remember that you are the minority here on dear ol' Earth. Most of us are just vapors in the wind.

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