Data is essential in healthcare delivery and it is often what guides us in improving outcomes.
Utilizing data obtained from large populations helps us better decide what aspects of disease prevention and treatment need more of our attention. I have shared my concerns about the sanctity and security of these data in a prior blog from July.
These data are important and allow us to evaluate at risk populations and target our interventions. In the US, participation in surveys is 100 percent voluntary. The Centers for Disease Control obtains most of its data from diagnoses reported by healthcare institutions (there are certain disease that are mandated by law to be reported).
However, with the advent of the Affordable Care Act (ACA), some corporations and businesses have taken the acquisition of data a step too far. In George Orwell's novel 1984, the author presents a vision of a dystopian society where "Big Brother" watches every move ordinary citizens make in an attempt to maintain order (and advance his own agenda). We have all seen the recent government abuses within the National Security Administration (NSA) and within the Internal Revenue Service (IRS).
As the ACA is implemented, I am concerned that Big Brother may already be here and working in the U.S. healthcare system today as well. In medicine, the doctor-patient relationship is sacred – data disclosed for healthcare should be sacred as well.
Although our country has always been based on basic tenets of freedom of choice, right to privacy and other key freedoms, some institutions see Obamacare as a ticket to interfere with the daily lives of American citizens. For instance as reported in the last several weeks by the New York Times, Pennsylvania State University now is attempting to require all employees, including senior faculty, to undergo physical exams and answer online health questionnaires that contain very personal and very sensitive health information.
It is obvious that the pressures of the ACA and the need for cost containment is motivating these types of mandates. From the business standpoint, the university is hoping to reduce risk and liability by modifying at risk behaviors in its insured employees. However, none of these data will help the faculty do a better job for their employers and I am sure that the Penn State University administration clearly see this as a way to save healthcare dollars. The next logical step, however, may be to deny or terminate employment based on health risk and potential cost to the system.
Where does the rabbit hole end? Is this the beginning of health status discrimination in the workplace?
Many senior faculty at Penn State are refusing the mandate based on invasion of privacy – even though the university is planning to levy substantial daily fines for non-responders. Several prominent professors have stated that if they are forced to participate they will simply answer the questionnaires randomly and provide far-fetched ridiculous answers – simply play the conscientious objector. Many other Americans are waiting to see how this pans out – there is concern that this type of activity will begin to spread to other institutions and industries. Labor unions are already beginning to lobby against these mandates; in the case of Penn State, union employees are exempt. At what point are our private lives and medical histories private? What is the separation between workplace and home? Where do we draw the lines and do we allow others (government and employers) to draw the lines for us?
The spirit of risk reduction and working with employees to improve their health status and live better lives makes good sense – however, there are better ways to accomplish this goal. Health fairs, educational seminars and free health screenings for cholesterol and high blood pressure make good sense, but all of these activities should be voluntary. Asking highly personal questions such as sexual preference, prior drug or alcohol use and the state of one's marriage should not be a part of a wellness program at work.
In the case of the Penn State questionnaire there are even questions related to how you get along with others in the workplace – including your boss. These issues are private and should remain that way. In defense of the institution, the development of these wellness programs are not entirely their fault. In fact, the ACA provides a 30 percent discount for the implementation of a comprehensive wellness program – virtually assuring that every business will "voluntarily" submit to these types of invasion of privacy.
Although the university administrators claim that the data is secure and is not available to supervisors and those in the administration, it concerns me greatly that this will not be the case – (just ask those Americans who had unlawful wire taps and those that were bullied by the IRS due to their associations with certain political groups).
Big Brother is watching - from your doctor's office, from your bedroom and from your back porch. I am afraid that this particular blog may leave you with far more questions than answers - maybe we should ask Big Brother.