Name based HIV reporting

[Stoptrackingus]

All 50 states in the USA currently use a name based reporting system to track HIV infections, this means your doctor and the labs are obligated by law to report all positive cases to state and or local health departments by name, who further continue to collect information over the course of your life. This seems it would be a barrier to testing and treatment in my eyes and I was curious as to what the poz community thought of this? Linked below is the CDCs information about it.

https://www.cdc.gov/hiv/statistics/surveillance/index.html

[leatherman]

This seems it would be a barrier to testing and treatment

This information is tracked through each state's Ryan White Program. This data is used to determine allocation funding, determine disparities in prevention and treatment programs, and to create interventions on federal, state, local, and provider levels to improve the quality of care and treatment for PLWH and prevention of further HIV transmission. All of this data is protected under HIPAA laws, and all of this data is name-redacted for all Ryan White quality management programs. Beyond a local provider's office, almost all personal information is stripped from this data.

https://hab.hrsa.gov/clinical-quality-management
https://hab.hrsa.gov/clinical-quality-management

Data about recently diagnosed persons is transmitted from the provider to the local health department which helps to ensure patients have been informed about treatment providers, and the need to not transmit the virus to others. This data is used anonymously in contact tracing to reach out to people who could be at risk of being infected to try to encourage and increase testing; thereby getting more patients into treatment earlier and hopefully reducing the further transmission of HIV.

https://www.thebodypro.com/article/what-is-hiv-contact-tracing-and-why-is-it-importan

I've been a part of both the South and North Carolina state health department's Ryan White Programs (along with attending numerous conventions, conferences, etc) and personal data has never been available. Beyond a local provider (and an initial notification to the local health dpt for contact tracing), only aggregate data is available.

I would certainly suggest that you speak with your provider about the local Ryan White program so that you could learn more about how this data is utilized and how the Ryan White Care system works. Technically every provider should have a consumer work group for PLWH, or be able to link you to the local Ryan White quality management group. PLWH are encouraged to learn more, monitor the program locally or at the state level, and get involved in developing interventions and representing the needs of PLWH. Your concern for the protection of personal data is certainly something you could advocate for.

[Matths]

Hello, thanks for raising this interesting topic. Reading the surveillance article it says repeatedly that only de-identified data are reported. I知 confused now that the possibility is raised that personal identifiers are reported. Where does this assumption come from?

From a surveillance perspective, reporting identifiable data doesn稚 make any sense since they don稚 contain informations which add in any shape or form anything useful. That痴 why I知 puzzled that the possibility is raised that identifiable information is reported. Can you please clarify, thanks Matt

[Stoptrackingus]

The information sent to the cdc is de-identified, the names are stored at a state level. Check into the hiv surveillance program in your state.

[Jim Allen]

This information is tracked through each state's Ryan White Program. This data is used to determine allocation funding, determine disparities in prevention and treatment programs, and to create interventions on federal, state, local, and provider levels to improve the quality of care and treatment for PLWH and prevention of further HIV transmission. All of this data is protected under HIPAA laws, and all of this data is name-redacted for all Ryan White quality management programs. Beyond a local provider's office, almost all personal information is stripped from this data.

A similar process in the EU nations & the identifiable data is protected by GDPR. Ireland for example has a list of illnesses that need to be reported. It would not surprise me if the US would have similar.

https://www.hpsc.ie/notifiablediseases/listofnotifiablediseases/

The de-identified data is then shared with the ECDC by the EU nations and Central Asia to understand gaps, progress and if a region requires any additional support etc. Nothing to stress about.

https://www.ecdc.europa.eu/en/all-topics-zhiv-infection-and-aidsprevention-and-control/monitoring-implementation-dublin

@Stoptrackingus

Are you living with HIV?

[Stoptrackingus]

No, I知 negative, but professionally I知 a patient advocate, this was recently brought to my attention by someone refusing testing, and I知 just curious what others felt about it. It seems to me that information is collected about many illnesses without such invasive oversight and that if this is a barrier to care that it is inappropriate.

[leatherman]

I知 just curious what others felt about it. It seems to me that information is collected about many illnesses without such invasive oversight and that if this is a barrier to care that it is inappropriate.

as I mentioned before, you should definitely speak with your state's Ryan White department to understand how this information is collected and used. Great improvements in prevention, care and treatment have been made and is made yearly with this data; not to mention this data collection is part of the oversight of the Ryan White Care Act, and has been since it's inception in 1990, with the backing of people living with HIV.

I believe that by learning more about how HIV prevention, care and treatment is given, tracked, managed, improved, and proven effective, by state officials (with more than my experienced layman knowledge), you will understand that this data tracking has actually reduced the spread of HIV, increased testing, and improved prevention and treatment. Ryan White officials can help you be a better patient advocate with a better understanding of how and why this data is collected and used, so you can better explain it to patients who are concerned about this issue when requesting testing.

[Jim Allen]

No, I知 negative, but professionally I知 a patient advocate, this was recently brought to my attention by someone refusing testing, and I知 just curious what others felt about it. It seems to me that information is collected about many illnesses without such invasive oversight and that if this is a barrier to care that it is inappropriate.

 

As the forum admin, I have to maintain a level of politeness, so ill just say, don't post here again. This forum is for people living with HIV.

[Almost2late]

I have to admit that being hiv+ and tracked by the government isn't surprising at all.

If you get your medication from a Walgreens, you're also in their corporate data base, along with everyone else.

With all the googling hiv this, and hiv that, I'm pretty sure my status is known in plenty of databases.. by name.

[Jim Allen]

Locking this thread as the OP can't participate. However, if a forum member living with HIV wants to open a new thread on this topic they are welcome to do so.

Jim