Anonymous vs Confidential Testing

Soon, LivWell will begin an important change to the way HIV tests are recorded. If you’ve been tested previously, your tester would have explained that your test is anonymous, however, LivWell is now beginning to transition to recording tests confidentially. This shift may raise questions- What’s the difference? How does this affect my privacy? We’ll attempt to answer those today! 

Confidential and Anonymous: What’s the Difference? 

Confidential and anonymous are two distinct approaches to data privacy- it is important to know the difference between the two when making decisions about healthcare, such as HIV testing.  


With LivWell’s anonymous testing, the paperwork completed to record your test did not ask for any personally identifying information such as your name/date of birth. Instead, your test is given a unique number to identify it in the reporting database. That means no one could link your identity to your test. Concerns about your safety are valid given the stigma and discrimination surrounding HIV and HIV testing- this complete privacy can feel safer and reassuring. 


Moving forward, all LivWell HIV testing will be confidential. What this means is that your tester will complete paperwork to record your test that will ask for personal information such as your name and date of birth. This information will be used to create an internal record for reporting- linking you to your test and any future tests as well.  

Why the Change?  

This may seem like a step backward in privacy, and you might be wondering, “Why?”. Essentially, our funders are how we can provide free-of-cost HIV testing to the community, and they have mandated that all testing be confidential. Confidential testing practices also allow for better data management, program management, and comprehensive care; such as personalized support for persons with ongoing risk for HIV.  

Is my Test Still Private? 

At this point, you may be thinking “Is my information still private with confidential testing?” The answer is YES. 

It is important to remember that both anonymous and confidential testing ensure privacy. Whether confidential or anonymous, state and federal privacy laws- including HIPAA- protect your information. Think of it similarly to having labs done at your doctor’s office- your results are stored with your medical record and linked to you, but privacy laws prevent your doctor from sharing those with anyone else without your permission. 


LivWell’s transition away from anonymous testing is not a step backward in terms of privacy, but rather a step towards aligning with best practices to ensure that we can continue to provide the community with free-of-cost, high-quality HIV prevention efforts. While the change might initially raise some concerns, it is our goal that this information will answer some of those questions. If you have any further questions about confidential testing, please do not hesitate to ask your tester or any other staff member! 

– Tabetha Sisk, BASW
  CDC Manager