The recent revelation of the NSA’s top-secret mass surveillance program by Edward Snowden has spotlighted the benefits and burdens of our increasingly digitally connected world. According to President Obama, monitoring our phone calls, emails, and web activity has helped thwart dozens of terrorist attacks. But the idea of the government keeping track of what had hitherto seemed private raises the specter of an Orwellian world in which everyone is under constant surveillance by “Big Brother.”
The growing and changing use of information technology in the delivery of health care is likewise a mixed blessing. As a primary care physician, I often encounter patients and their problems without access to a record of the care they received elsewhere. Knowing what tests have been run and treatments tried would enable me to provide more effective, efficient care and avoid wastefully duplicating services. To this end, governments and hospital systems are establishing health information exchanges (HIEs) that allow patients’ data to be seamlessly shared by practitioners. These exchanges also promise to provide a rich database for researchers and public health authorities.
But electronically collecting and sharing millions of Americans’ health information presents the real risk of large-scale privacy violations. A wide variety of individuals, from clinicians and clerks to government and insurance company employees will have access to among the most sensitive and intimate aspects of our lives. It is all too plausible that somebody seeking notoriety or a thrilling display of power could take it upon himself (a la Wikileaks) to disseminate millions of individuals’ health data on the world wide web. Perhaps more concerning are the subtler yet still serious privacy violations that are likely to regularly occur. Thus, it is crucial that our ethics, laws, and privacy protection technologies keep pace with the threats to privacy inherent in the growing and evolving use of health information technology.
Health information technology will also play an increasing role in how we pay for health care and judge its quality. The current fee for service system rewards the volume of services delivered rather than how well they make us. This is believed to result in a number of excessive and sometimes even harmful interventions. Health information technology should facilitate better measuring quality of care. Utilizing this data will enable the government and insurers to pay for good results, rather than for merely more tests, hospitalizations, office visits, and procedures. Patients will also be better equipped to select hospitals and practitioners with a record of robust outcomes.
But this commendable quest to measure and pay for performance carries the risk of overshadowing and deemphasizing less quantifiable yet equally vital components of the healing profession. It is surely important to control blood pressure, cholesterol, and diabetes, to avoid complications from surgeries and hospitalizations, and to prescribe the best medications. But there is much more to being a good doctor than this. There is pulling together the disparate elements of a long-suffering patient’s story and arriving at an elusive diagnosis. There is breaking the bad news of dementia, autism, or cancer honestly, but without taking away all hope. There is discerning when an anxious patient with a headache needs reassurance or an urgent MRI. There is being a compassionate presence and a trustworthy guide during the most trying moments of a person’s life. There is taking the time to learn what gives meaning and purpose to a patient’s life and arranging his or her care accordingly. It is quite difficult, if not impossible to measure these virtues and character traits, to put a numerical value on these essential elements of the healing arts. So if quality is defined solely by what can be quantified, we risk creating a culture that values certain marks of technical excellence, but neglects the human, personal art of care. The result could be a practice of medicine greatly impoverished for both patient and physician.
Preserving the human touch in healthcare does not mean resisting its growing use of information technology. It is inevitable that the digital revolution will transform the way healthcare is delivered, yielding improvements in quality, cost, and convenience. But even as we enjoy and celebrate these changes, it is essential to honor and preserve important values such as patient privacy and the personal art of care.