The ancient Greek father of medicine, Hippocrates, knew that trust was a fundamental tenet for the effective practice of medicine. How can a patient seek the care of a stranger without the establishment of a fiduciary trust? A patient must reveal the most personal, private information about themselves and therefore must possess the utmost confidence in their physician to keep their information in confidence and all uses of their data transparent. Yet, in today’s digital social media age, does privacy really exist? Large companies make unfathomable fortunes harvesting all manner of data from financial information to the mundane minutia of daily life. In this environment, here are five reasons why patient data privacy and control are more important than ever:
1. Maintain the fundamental fiduciary doctor-patient relationship.
“Things that are holy are revealed only to men who are holy.” – Hippocrates, Greek physician (460 BC – 377 BC)
It is critical for the health care system to maintain the trust between doctor and patient in a patient-centric dynamic. If patients believe that information they give their doctors and healthcare professionals, and by extension, these larger institutions is going to be used against them and not in the patient’s best interest, then patients will be reticent to provide needed details for their own health and well-being thus deteriorating their own healthcare. If patients believe in the ultimately altruistic interests of their doctors, they will be more likely to provide critical details and take an active role in their care. In addition, there is great financial pressure to utilize algorithms to automate care decisions to reduce costs, thereby increasing institutional and industry profits. The doctor-patient relationship prevents direct access of industry-designed algorithms that could work more in the interest of industry profits, rather than to improve patient health.
2. Higher data quality.
“Conclusions which are merely verbal cannot bear fruit, only those do which are based on demonstrated fact.” – Hippocrates, Greek physician (460 BC – 377 BC)
The equation is simple: higher quality data means higher quality medical care. One of the advantages of the digital age is the ability to synthesize huge amounts of data quickly. However, the data used must be accurate. Electronic health records are known to contain many errors, and patients can assure accuracy of their personal health data when they have access to check it. With patient trust through data use transparency and data control comes more detailed and better data in, better and more accurate and precise conclusions out.
3. Bringing back fairness and balance to current industry-centric data monopolies.
“...while calling on the gods, a man should himself lend a hand.” – Hippocrates, Greek physician (460 BC – 377 BC)
It is currently a data “gold rush” given current U.S. data and privacy regulations, and many large companies have made fortunes by making their customers into their commodity. They sell consumer data non-transparently to unidentified entities that use the data for uncertain purposes with ambiguous ethics, creating a data economy with network effects favoring a few platforms able to collect and lock up the largest masses of personal data. The data being recorded about a patient forms a remarkably detailed picture of their life. This picture is incredibly valuable when unified and stored both as a singularity and in conjunction with thousands, even millions of other lives. These pictures reveal patterns that permits the personalization of medicine, insurance, finances and more but the question is, who owns and controls this valuable picture? And what about the risks associated with massive data leaks through hacking and other data breaches? Transparency and personal data controls are keys to creating a balanced and fair patient-centric digital data economy that promotes diverse and open competition.
4. Assure patient access to their data.
“A wise man ought to realize that health is his most valuable possession.” – Hippocrates, Greek physician (460 BC – 377 BC)
Patient control of access to their own data is needed for a number of reasons. First, it promotes data exchange across healthcare systems to assure access to critical health data wherever the patient may seek care. Healthcare systems should be required to provide patients with their full medical record in electronic in a timely manner, and those systems who do not comply should be held accountable for data-blocking. If we assure patients control their data, it will allow them to choose healthcare systems or associated third parties, thereby redistributing data across the economy to allow smaller companies, who may be more ethical and have better solutions, to compete. In addition, patients could allow researchers access to their personal data. Many researchers currently have trouble gaining access to data now in data silos created by industry purchases and other private sector agreements. Researchers do not have access to big data needed to discover tomorrow’s cures and medical advancements. Last, patients who are more engaged in their own healthcare tend to have better health outcomes overall, and patient data access allows patients to become more engaged in their own health.
5. Preserve basic human rights.
“Wherever the art of medicine is loved, there is also a love of humanity.” – Hippocrates, Greek physician (460 BC – 377 BC)
The “Right to Privacy” is a fundamental human right as declared by the UN Universal Declaration of Human Rights drafted after WWII that has been adopted around the world. When this Declaration was adopted in 1948, the world had not yet imagined our new digital age. Recently, however, some prominent leaders who remember the excesses of totalitarian regimes, have started to work to sharpen public opinion and remind us that our privacy is indeed a basic human right. The right to privacy and control of data about our bodies is essential to preserving the dignity and respect of each individual, as well as trust in the medical community. In the digital age, it will become the fiduciary duty of each doctor to protect the digital data privacy rights for each patient as a basic human right.
We are entering a new technological era for healthcare where we must commit to new standards of patient data privacy, data use transparency, and personal data control. We have outlined five key reasons why this general topic is now more important than ever. It will take many years of work on the part of academics, healthcare systems, industry, and government to fully assimilate all associated ethical, societal, technological, and business considerations to assure that we manage patient data in the right way.
Dr. Moira Schieke Bio
Founder and CEO of Cubismi, Dr. Moira Schieke is a cancer imaging clinical and research Radiologist based in Madison, WI. Dr. Schieke completed her fellowship in cancer imaging at Dana Farber Cancer Institute in Boston, research fellowships at the National Institutes of Health in Bethesda, MD, and is adjunct Assistant Professor at the University of Wisconsin at Madison. Dr. Schieke is a nationally recognized artist and painter. Cubismi was born of a critical need for cancer imaging innovation for earlier detection and better management of cancer.