This is probably happening in a lot of places, but I haven’t really seen anyone talking about it, especially in the context of the ongoing protests, so I will. If you don’t usually read every word of the consent forms you sign at the hospital, you need to start now. 1/

In the past month, I’ve twice been asked to sign medical consent forms (first for genetic testing; next to set up a “patient portal” so I can have prenatal visits via video conference). I refused to sign both b/c of the data-sharing provisions and lack of privacy protections. 2/

Both consent forms would’ve let the institutions share my data w/ other medical institutions, which isn’t unusual. But they also included stipulations to allow them to share my medical data w/ law enforcement if deemed necessary to comply with “laws, policies, or procedures.” 3/

One of the two institutions (a hospital) has partnerships with other institutions/entities, mostly hospitals/med schools. But that partnership also includes “The City of New York.” And they wanted me to sign a consent form to let them share my medical data with “The City.” 4/

It’s not unusual for medical consent forms to include statements about having to comply with laws & sharing info w/ local health departments in specific situations (for example, if someone tests positive for TB, the health dept is notified). But that’s not what this was. 5/

This consent form wanted permission to share my medical data with “The City of New York” for essentially any reason they deemed necessary. It also said I would have to pay a fee if, in the future, I wanted to see a list of every entity with whom they had shared my data. 6/

This week, I got a call from someone who said she was from the hospital. She wanted to “help me” set up my patient portal. When we got to the consent form/permissions, I started reading & had barely finished the 1st paragraph when she started rushing me thru to the next page. 7/

I told her I was still reading the forms; she said she could wait. But within a minute, she was already trying to get me to the next page. So at that point, I told her I would call her back when I had finished reading the entire thing. She seemed...not pleased about that. 8/

She told me I could call back at the number she had called me on. When we hung up, I googled the # just to verify. I couldn’t find a single listing or mention of that phone # being associated with the hospital (or any hospital). This part of the story is not yet resolved. 8/

The broader point I want to get across is that your medical data, like any other personal data, belongs to you, but a lot of people & entities are working very hard to get their hands on it. Some want to use it for profit. Some want to use it for surveillance. 9/

The intersection of COVID-19 and the ongoing protests has the potential to create a privacy nightmare in which police gain access to medical data and use/abuse it to track protesters — an issue that is already raising concerns. 10/ https://www.google.com/amp/s/www.vox.com/platform/amp/recode/2020/6/1/21277393/minnesota-protesters-contact-tracing-covid-19

The other concern I have is that protesters who are hospitalized due to injuries are not exactly in a position to advocate for themselves when the hospital shoves 10 pages of consent forms in their faces. So we need to help by proactively advocating for them. 11/

I‘m not a lawyer, so I’m not in a position to offer any sort of legal advice on this matter. But I will do my best to find out what other cities & localities are participating in “data sharing” partnerships w/ hospitals, and I’d greatly appreciate any info that you may have. 12/

I’ll work on organizing the info I find and making it available along w/ basic tips for protecting your data & privacy while navigating the healthcare system. My DMs are open if you have info, tips, etc. (I‘d *love* to hear from healthcare workers w/ info on this matter). 13/

You can help right now by raising awareness & talking to friends/family to make sure they aren’t pressured into signing exploitative medical consent forms. And if you have ideas on how to protect injured protesters from being victimized again at the hospital, please share them!