Unless you’re a visitor from another planet, you’ve probably seen or heard some news about the internet being a giant privacy sinkhole. Between the stories that first started to break in the Cambridge Analytica/Brexit aftermath, and the ongoing drip-drip-drip that is the “my phone is a snitch” stuff that seems to bring fresh scary headlines every day, it feels like anyone who has a social media presence of any kind has had their privacy violated in some way.
It’s tempting to just say, “who cares – I don’t do anything that anyone else cares about,” but that’s not really the case if you participate in online patient communities, particularly those that gather on social media platforms like Twitter and Facebook. The issue is particularly problematic for patient communities dealing with health issues that could impact their health insurance coverage, or their employment status, or even their lives, if the details of their health status were widely or publicly known.
An example of that risk could be someone who’s gay, but who works for an employer that has a public profile of being anti-LGBTQ. Someone in that situation, who participates in a Closed Facebook Group for people looking to share experiences on getting access to pre-exposure prophylaxis (PrEP) medications to prevent HIV transmission, might think that a Closed Facebook Group would be a safe place to have those conversations, but Closed Groups – which were promoted by Facebook to community moderators as private community building tools – were subject to the same data privacy breach risk that the rest of Facebook became. Which means that a gay man in a Closed Group that serves as a community space for discussion of access to HIV preventive treatment could be outed to their anti-LGBTQ employer via data leakage from that “private” group … which was not really private at all.
There is rising awareness, and concern, in patient communities about this privacy issue, particularly related to Facebook Groups, which became the de facto place to establish peer health communities over the last decade. An advocacy group called The Light Collective is looking to build a safe harbor for patient groups to build community without sacrificing members’ privacy, but until that harbor is built, what’s a patient community to do? And what about just-plain-people, the ones called “patients” – what’s their path to privacy in the surveillance age?
Here are my suggestions for enhancing your privacy online:
- Harden your Facebook settings. Here’s a great overview on how to do that from WIRED: The Complete Guide to Facebook Security
- Use the settings on your iPhone or Android to control how your phone’s apps track you. Kim Komando’s tips page on doing that: Stop your phone from being tracked with these settings
- Drill in on your Google settings to reduce tracking. From CNBC, here’s How to stop Google from tracking everything you do online
- Create an email address that does not include your name, and use that for all your social media accounts and activity (mine is … well, never mind what mine is – get the picture?)
The internet is a boon to humanity when it comes to access to information, and democratization of knowledge. However, along with access to information, we’ve also gotten disinformation, trolls, and cyber-surveillance at scale. Peer to peer communities, particularly in healthcare, are critical to accessing good information, and emotional support when dealing with serious illness. However, data privacy is not guaranteed in any way on social media platforms. Caveat emptor – let the user beware. And modify their settings accordingly.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.