CaringBridge author Hanna Cooper gets a kiss from her husband, Tom Moberg.
Social media keeps Hanna Cooper connected—on her terms. As a leadership and executive coach based in St. Paul, MN, Hanna uses LinkedIn and Twitter professionally. As a wife, mom, friend and neighbor, Facebook serves a social purpose. But it is through Hanna’s unexpected diagnosis of stage 3 pancreatic cancer that I came to know her.
I am CEO of CaringBridge, the global nonprofit social network for families immersed in health journeys. Hanna has used CaringBridge since 2016 to share medical updates, organize offers of help, and reflect on what life looks like with cancer in the mix. During a recent visit to our offices, Hanna talked with our team about her approach to social media regarding her health.
Strength Comes From Feeling Connected
Like so many patients and caregivers plunged into illness or injury, or facing chronic conditions, Hanna said strength comes from feeling connected, and belonging. Everyone who loves her little family wants to know how to help and to best provide support. Hanna said she often uses social media to share with her networks what is helpful, on any given day, even including what types of good wishes and prayer are welcome.
But just as she wouldn’t post pictures of her kids on LinkedIn, or provide client coaching through Twitter, what Hanna shares with family and friends on CaringBridge isn’t found elsewhere on the internet. Especially on Facebook. For the record, Hanna said she felt that way long before the Cambridge Analytica scandal—Facebook was never the place to share her health story.
A Place to be Held Close and Protected
This is something we have heard for years, and now we hear it much more often: “I would never write about my health on Facebook.” After diagnosis, illness, injury … any health crisis, families need a safe and convenient place to communicate. At the worst times in their lives, patients and their loved ones should be held close and protected. Not data-mined.
The stated mission of Facebook—and by the way, I am a very active Facebook user—is “to give people the power to build community and bring the world closer together.” But its for-profit business model puts sales growth first, ahead of serving that basic human need to feel connected. Investor pressure for results has not surprisingly translated into data-collection and advertising. Both at the expense of privacy. And decency.
Selling Patients Data is not OK
Maybe it’s OK for car ads to appear in the news feeds of anyone who has ever booked an oil change online. Or for expectant moms posting ultrasound pictures to be fed advertisements for baby furniture. But collecting personal information and advertising to patients in the midst of a health crisis is simply not OK.
Imagine Hanna, or any patient or caregiver trying to cope with the unimaginable, logging in to see offers based on the late-night WebMD research everyone does when they are too worried to sleep. Or landing on a mailing list to buy something related to their worst nightmare. That’s the very definition of adding insult to injury.
No Time to Make a Statement
While quitting social networks to make a statement fits in the continuum of responses to Facebook’s lack of regard for privacy, families who have a lot to communicate with a lot of people typically don’t have much time to invest in protest. Especially if the information-sharing alternative is non-stop phone calls and responding to individual emails and texts for every health update.
Another option exists in CaringBridge, where decisions made by our software-engineer founder 21 years ago—when Mark Zuckerberg was 13—created an online space of help, hope and healing. When Sona Mehring of Eagan, MN, launched one website in June 1997 to support two friends whose daughter had been born prematurely, she said she pictured surrounding the new family with love, hope and compassion. Hundreds of thousands of websites and billions of visits later, love, hope and compassion remain the only things surrounding CaringBridge users.
As technology has advanced, opportunities to gather information and market to patients, caregivers and their loved ones have been plentiful. But as a nonprofit supported by those who know how much it matters to feel connected, families like Hanna’s will forever find in CaringBridge a safe place to turn. It has always been that way. And always will.
New to CaringBridge and Wondering What We Do?
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health crisis through the use of free, personal websites. Know someone who could benefit from starting a CaringBridge site to keep loved ones informed and get the love, and support they need?