How Much of Your Personal Health Information Should Be Online?

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It's time to move beyond the isolated patient experience, but the social outlets we're using aren't made for sharing high-stakes information.

Image: FuzzBones/Shutterstock

"Has anyone else gone through this before?" That's one of the first things a person asks himself after being anointed a "patient." In illness, as in any other life events, we are social creatures looking for shared experiences and in need of support. But the reality is that our health care system is not designed to serve this purpose. Instead, our system evolved to promote isolation. And, in many ways, this isolation is very much at the heart of the patient experience.

There are two solutions to the isolation experience. The first is to build layers upon the patient-clinician relationship -- to build stronger ties, more connections, and a culture of shared decision-making between patient and physician. There are many advocating for this idea, but it requires cultural shifts across a medical profession that typically evolves at a snail's pace and would require systemic changes in both policy and reimbursement. The second is to build communities of patients with shared experiences, shared fears, and shared data -- and it is this second solution that deserves much more public discourse, lest we get ourselves in an unexpected and unfortunate jam.

While online health solutions and peer-to-peer communities have rapidly evolved, the protections of this participation and its accompanying data have not kept pace.

CAVEAT AUCTOR -- AUTHOR BEWARE

Few would argue that our popular culture is increasingly accepting of open sharing -- I know more about my elementary and high school classmates now than I did when we were seated in the same rooms. We are embracing social technologies at breathtaking rates, and by some reports, these technologies are quickly becoming our mainstream communication channels. But the most omnipresent social channels were not engineered for sharing the types of high-stakes information that defines the vulnerability of being a patient. The novelty of sharing personal health information online, even within "private" communities, has not received specific legal attention. As a result, our only certainty is that health care-related information that is shared across these channels, be it Facebook or Twitter or online disease support groups, is neither safe nor protected.

So we each must think through how and what we choose to share, and make our own value judgments. To do this, it is important that we understand how our online health-related behaviors may be tracked, and what conclusions may be drawn. It is important that we ask the question, "What could be learned from analyzing my online activity?"

Search -- The sites that you visit, and the search terms you use, can say a lot about your health and wellness. Episodic questions about painful urination, urology, and pharmacy locators may suggest an STD. Searches for prenatal vitamins or folic acid may suggest that you are looking to have a child.

Social Media Activity -- Status updates and comments made on Facebook are revealing -- repeated posts about constant fatigue, lethargy, or drug-related vernacular may suggest alcoholism or addiction. Posting pictures provides clear evidence of lifestyle choices and, with only limited inspection, may document unhealthy behaviors or choices. Even more telling may be a pattern of "liking" or following disease awareness groups.

Online User Groups -- Engagement with disease awareness and advocacy communities may be evidence of health status and illness, but the types of participation, conversations, and revelations made within the communities may provide rather definitive proof of pre-existing conditions and disabilities.

Personal Health-Tracking Communities -- Sites like PatientsLikeMe.com and 23andme.com are built on collecting and analyzing your personal health data. These sites are among the most important innovations of patient empowerment and they invest highly in their security, but putting your genetic risk factors or lab results into the cloud provides near-absolute transparency of health status and prognosis.

SO WHAT IS THE RISK?

While online health solutions and peer-to-peer health care communities have rapidly evolved, the online security and legal protections of this participation and its accompanying data have not kept pace. As a result, nearly everything we do online may be tracked and used to document our health record and status. And this may have major ramifications for employability and insurability.

We now have a rapidly growing case history for employers monitoring the online activities of employees -- and there have been countless, very public accounts of employees being reprimanded or terminated for activities that blur the line between illegal, unethical, and unhealthy. Though we have few, if any, examples of the curtain being pulled back on insurers, we would be foolish to believe that they are not utilizing the same monitoring process and making insurability or premium decisions based on what they find.

It is not my intention to be alarmist, just cautionary. I am an advocate for the benefits of health care collaboration. I wholeheartedly believe the most practical solution for our nation's health care quality woes is to leverage peer-to-peer health care. But I cannot blindly promote universal participation or empowerment. In the past five years, we have gathered some marvelous anecdotes demonstrating the benefits of patients being social with their health, but in my opinion, we are just beginning to wrestle with the risk.

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Brian S. McGowan is an independent consultant and author. He has worked as a medical scientist and educator.

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