Cyberattacks threaten to expose information previously unknown to the public. Personal health information that was thought to be private is no longer held in secrecy. When an individual elects to forgo that privacy and make available his medical record, that threat is eliminated.
John Halamka, MD, CIO of Boston-based Beth Israel Deaconess Medical Center, is one such person who voluntarily gave up his privacy by consenting to have his entire medical record and genome made publicly available as part of the Personal Genome Project, he wrote in a piece for Politico.
Dr. Halamka's wife, daughter, father, mother and father-in-law also consented to making their records publicly available, he says. "None of my family members are concerned about the hacking of our own medical data; it's already public. And the problem of one doctor not having medical records because they're stuck at another office? We're not concerned about that, either," he wrote. "Any clinician can access our information from any browser. We're not concerned about the misuse of our data, since we have already approved its use as 'open source' material."
Dr. Halamka emphasized the fact that his and his family's decision to make their medical records publicly available was "our voluntary and informed choice," and the government shouldn't make moves to require the same type of disclosure. However, he suggests that voluntarily sharing such information may become more ordinary as information sharing is a common characteristic of the younger generations. "Millennials post changes in their relationships on Facebook. Is openly sharing immunizations, allergies and physician orders for life-sustaining treatment any more controversial?" he wrote.
The airline industry provides an analogous scenario, Dr. Halamka suggested. When he applied for a Global Entry card for international travel, Dr. Halamka submitted his entire identity to the federal government: passport, fingerprints and identifiable information. In doing so, Dr. Halamka gave up privacy for travel convenience. The same, he suggested, could happen in healthcare.
What's more, openly sharing data could have broader, positive implications for healthcare research and development. "If individuals can determine their own destiny data and not be forced into openness — or trapped behind privacy walls — by governments or corporations, then I believe our culture will shift towards the open sharing of healthcare data. And cultural values will shift away from keeping health information locked up, and toward the benefits of data sharing for wellness," he wrote.
And, making data publicly available removes the power and the threat hackers currently hold, the threat of exposing information believed to be private.
Dr. Halamka concluded: "If we change culture and policy correctly, creating legal protections for patients who openly share their data, we should be able to stop worrying about our most intimate information. We'll be comfortable sharing data for the sake of safety, quality and dignity, instead of waging an increasingly challenging battle to keep it locked away. And in this crucial area, we won't have to care whether the hackers win."
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