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by Tambre Leighn, Well Beyond Ordinary

We’ve got a secret

In terms of healthcare privacy, my first significant encounter came when I was a young adult caring for my late husband after he was diagnosed with cancer. This was around two decades ago, a time when we were serenaded by those distinctive tones of dial-up connections while logging into AOL and when the notion of mobile apps had yet to become an integral part of our daily lives.

My primary privacy concern, at that time, stemmed from our being freelancers in the film industry. He was a production designer and I was his art department coordinator. Although my husband was fortunate to have very good health coverage through his union, he needed to work a substantial portion of each year to maintain eligibility. 

Continuing to work was crucial not only for financial stability but also for his emotional well-being. Despite the glamorized image of Hollywood as a daring industry, it is actually quite risk averse. Maintaining confidentiality about his condition was vital given the industry’s risk-averse nature. This led to a deliberate choice to disclose information on a need-to-know basis so he wouldn’t miss out on job opportunities.

A Breach Reveals Cracks in Privacy

Another pivotal moment in my privacy awareness came a year prior to the revelation of Facebook’s unauthorized data harvesting from private patient groups. The leaks escalated from there, spurring unprecedented enforcement from both HHS and the FTC this year. As a coach for cancer survivors and caregivers at that time, I had established private Facebook groups for my clients, only to realize my clients’ privacy might be at risk.

Recognizing the significance of client confidentiality in coaching relationships, I immediately discontinued these groups on Facebook and committed to finding a more secure and confidential platform for future use.

Balancing Needs For Connection and Privacy Online

As we approach the end of 2023, online risks continue to mount, from overflowing spam folders to unsolicited scam messages and eerily targeted ads. The demand for tight security measures, including complicated passwords, persists in the face of mounting cyber threats.

In moments of dire need, patients and caregivers seek support and information in online communities to help them navigate the complexities of healthcare systems and insurance. This vulnerable situation sometimes leads to a hurried acceptance of terms and conditions to access much-needed support. I, too, confess to sometimes sacrificing privacy for the sake of urgent resources.

Becoming Empowered

It’s been a long road from worrying about personal privacy and keeping my late husband’s diagnosis secret to understanding the complicated challenges of today’s online world. Joining the Light Collective Summer 2023 cohort has been transformative, equipping me with essential tools to protect my digital presence, allowing me to collaborate with fellow advocates, and expanding my awareness of the importance of protecting our patient communities.

While it’s important to strengthen the security of our communities, it’s equally vital for individual patients, caregivers, and advocates to have control over our data. For further insights into this critical conversation, start here.