Sophies Choice: Life or Privacy?


by Sven Larsen

Are you ready to make a life-or-death decision?

Most decisions arent as dramatic as the one the main character faces in the movie Sophies Choice – deciding which of her children will live or die at the hand of Nazi prison guards – but how you approach health care privacy can be the difference between health and sickness.

Privacy as we know it, in part due to social media, is changing. People are publicly proclaiming that they are out of work, like a certain presidential candidate or joined a local weight loss group without batting an eye sentiments that would have seen out of place for our parents generation.

While talking about health maladies used to be unthinkable Billy Crystal poked fun at his mother for whispering the word “cancer because she was unable to say it out loud theres a growing acceptance with sharing health-related information. Breast cancer is now not only openly discussed, but people wear pink or participate in walks to show support or that theyve survived the disease. Raising awareness has translated to increased funding, enabling research and progress to be made.

Giving up privacy online when it comes to sharing health-related information is slowly coming into fashion and it should, because conversation can lead to progress. People used to only share bad news from the doctor among family and close friends, but today more people are using social communities to share or research the challenges theyre facing or gain support from other people going through a similar experience.

There is still some trepidation when deciding how much information is too much. Some of that stems from fear of being penalized by insurance companies, though new legislation loosens the reigns of being judged for a pre-existing condition. Others may be hesitant to share information about an illness lest they be stigmatized by co-workers or their employer.

However, breaking the barriers of online privacy can impact health outcomes. When patients share information, we can use that information to uncover new treatments, receive better care, be more educated and have more productive conversations with our physicians. Communities like Patients Like Me and CureTogether connect people going through the same thing, inviting them to share their condition, how it affects them, the treatment they are receiving and how effective it has been. Not only can this community support be helpful to patients, but analyzing the patient-contributed data can spur new insight and research discoveries.

Greater transparency in health care can also be the right prescription for improved preventative care. For example, educating the public on the connection between healthy eating and lifestyle choices are lower risk of diabetes, cancer and heart disease.

It can be scary to think of giving up your privacy, but were heading to a more exposed society. More doctors are moving to electronic records, making data more accessible and easier to analyze and identify patterns or trends. Being able to pair that information with patient observations and experiences can deliver on the true value of digital technology – helping patients make more-informed decisions and live a healthier life.

Is privacy on its way to being a relic of the past? Whats holding you back or what would incentivize you to share private health information?




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