Recently, I have been asked by several nursing organizations to review articles and position papers related to technology and innovation. I have also read a short article in the Minnesota Nurse about the reticence of patients to share their health information with healthcare practitioners. According to the nurse researcher, Lisa Moon of the University of Minnesota School of Nursing, 14% of people surveyed (equated to 45 million people in the United States) are withholding or suppressing their information because they are fearful of the security of the information and the healthcare system maintaining its privacy. Yet, the current trend in healthcare is to collect “big data” and to advance technology. These initiatives include everything from technological assistive devices used by patients to artificial intelligence used to promote healthcare assessment. Both of these are areas with which nurses might be associated in the future.
In every instance, in every article and position paper, questions arise about the privacy and confidentiality of the data collected. In some instances informed consent is suggested, but generally no provisions for access or security or privacy of the information is provided.
As much as I understand the striving for progress in healthcare, the need for this progress, and the fact that it may improve the lives of our patients as it accelerates advances in “defeating disease”, there are concerns.
I am not a technophobe or a Luddite, but the push to collect as much data as possible with few restrictions and even fewer concerns is beginning to make me question the ethical use of both technology and the data collected by it. My primary concern is informed consent on an individual basis for the use of the data in patient care, research, administration, and education and how big data on a collective basis has the potential to be positive or how it may deleteriously transform healthcare.
One only needs to consider the current COVID-19 pandemic to see what may happen. Politics on one hand and extreme fear communication on the other are competing. The politicians in some cases are trying to downplay the severity of the crisis while at the same time the professionals are modeling the dire consequences of ignoring the spread of the virus.
It would seem there must be a “golden mean” where politicians recognize the seriousness of the pandemic but professionals also recognize the difficulties with fear communication. My masters’ clinical paper was “Client Teaching Guidelines for Nurse Clinicians in Ambulatory Care Settings.” At the time (1997), high blood pressure was considered an epidemic. A National High Blood Pressure Program studied the best way to promote the use of antihypertensives. What they found was that fear communication changed behavior for a short time but eventually led to patients stopping their medications. Finally, after years of effort, the Program discovered that the most efficacious message for persons with high blood pressure, which encouraged them to continue therapy, was the slogan and message “do it for the ones you love.”
Much of what one hears reminds one of the dearth of results from trying to frighten citizens into compliance with less than productive and beneficial outcomes. Some say that there is no problem—others that the problem is too severe to conquer without draconian measures that may forever alter our identities as human beings and care workers.
Public health modeling, assistive devices for patients, thorough health assessment with artificial intelligence, social surveillance, and social distancing all have benefits and burdens. In the current situation it has been suggested that social distancing be tracked with GPS devices. That raises multiple privacy concerns that require addressing
As healthcare providers, we have benefited from the pandemic in that restrictions on practice have been eased for nurses nationally and here in Wisconsin. But, we also need to consider the far-reaching consequences of the ways in which we educate practitioners, the ways in which we practice and the ways in which we relate to our clients, peers and society as a whole—now and in the future.
Professional practice entails consideration of the benefits and burdens of technological innovation and the possible deleterious effect of artificial intelligence, big data, widespread surveillance and quarantining, social distancing and the economic cost of health. How much are we willing to sacrifice for an appropriate state of health and who assumes the benefits and burdens of an enhanced healthcare system?
We as nurses need to be prepared to consider both the positive and negative aspects of technological advances and the data that it collects. We need to consider how the data is used—to benefit our patients and society as a whole or to place more consequential burdens on an ever-changing world? Who assumes the responsibility for the result, both positive and negative? Historically, the vulnerable have assumed the responsibility. Can we ethically allow there to be such disparities in the future?
Now is the time to consider the moral and ethical arguments surrounding progress. There will always be unintended consequences, but they can be intuited in many instances, sometimes through brainstorming or the above-mentioned modeling. The time is now to consider the effects of social distancing, surveillance with big data, healthcare modeling and its uncertainty, and other advances.
Science is, and hopes to be, beneficial. Nursing science, education, administration, and research seek to improve the lives of our patients. But now is the time to consider the ramifications of progress. Progress without insight is less than helpful. Progress that is blind leads to social chaos or unwanted and unnecessary social control.
There are wise reasons for not sharing data with others. We are a communal healthcare system but privacy, security, confidentiality and informed consent still matter. My suggestion is one favored by the Roman emperors Augustus and Titus: “festina lente,” loosely translated as “make haste slowly.” There should be a balance of urgency and caution. Before instituting any healthcare innovation, consider the ethical and practical consequences and try to prevent as many unintended consequences as the moral imagination permits. If we can consider the future and the possible consequences of our actions and our science, we may make progress a benefit not a burden.
Mary Ellen Wurzbach is John McNaughton Rosebush Professor Emerita, University of Wisconsin – Oshkosh in Oshkosh Wisconsin.