President Frenk Outlines Ethical Issues Related to Big Data at UM-WHO Conference

Big data and artificial intelligence (AI) are emerging as powerful tools for improving patient care, advancing medical research and promoting public health. But the use of large datasets of electronic health records, along with other patient information, raises a host of ethical, legal and social issues, according to University of Miami President Julio Frenk, M.D., Ph.D.

Kenneth W. Goodman, Ph.D., left, and President Julio Frenk at the WHO global conference.

“Public and private corporations are having access to personal information that could be used for many purposes other than our wellbeing,” Frenk said at a two-day global conference hosted by the University of Miami’s Institute for Bioethics and Health Policy and the World Health Organization (WHO) on October 12-13 at the Colonnade Hotel in Coral Gables.

“We should safeguard our property rights, scrupulously protect confidentiality, and promote transparency in the use of information,” Frenk said in his introductory remarks. “Reliability of datasets is another area of concern, as well as the capacity of algorithms to generate valid conclusions. The extended use of big data is also generating social concerns, mainly related to automaton.”

Kenneth W. Goodman, Ph.D., professor and director of the UM Institute for Bioethics and Health Policy, co-director of UM Ethics Programs, and author of a 2016 key text in biomedical informatics, welcomed 30 health care professionals and ethicists from around the world to the conference, “Big Data and AI for Achieving Universal Health Care: An International Consultation on Ethics.” The UM Institute is one of 10 WHO Collaborating Centers in Ethics and Global Health Policy, and the conference was preceded by a meeting of the network of collaborating centers.

“The UM Miller School of Medicine is known for its work in ethics and health information technology, so Miami was a natural choice for this first-of-a-kind conference,” Goodman said.

Conference co-director Abha Saxena, M.D., coordinator of global health ethics for WHO, said it’s vital for health care professionals and policy makers to consider the ethical and legal issues associated with collecting and monitoring patient-related data. “We need to protect the privacy of individuals, so good governance is essential at every level,” she said. “We also need a framework for understanding the data and using it for meaningful goals. Finally, we need to be sure that individuals receive a benefit from allowing others to access their data.”

Keynote speaker Paul Tang, M.D., vice president and chief health transformation officer of IBM Watson Health, said artificial intelligence will support and supplement the work of clinicians, rather than replace them. In fact, AI can serve as a “data stethoscope” for physicians, helping them improve the quality of care. He also emphasized the importance of localizing big datasets to regions and cultures to better understand the social determinants of disease.

In his keynote talk, Doug Fridsma, M.D., Ph.D., president and CEO of the American Medical Informatics Association, said 74 percent of U.S. physicians and 97 percent of hospitals now use electronic records – a remarkable adoption rate over the past eight years. “But we are behind the curve in thinking about ethics because technology has moved so quickly,” he said.

Because the U.S. health technology is a decentralized “ultra-large system,” adopting collaborative policies and processes is essential for the appropriate use of data, Fridsma added. “We also have to think about the continuous evolution of technology and how data might be used sometime in the future.”

Along with advancing medical knowledge, the use of big data can help individuals make decisions about their own health, and provide a scientific foundation for health care policies that have huge consequences on the population, Frenk said in his talk.

“In the United States, we have not had a national conversation about access to health care,” Frenk added. “Some believe it is a privilege while others feel it is a fundamental right. We have not reached a fundamental agreement on the values that shape our national policies on financing and distributing health care services.”

Reflecting on his leading role in orchestrating evidence-based health reform as Mexico’s minister of health in the early 2000s, Frenk said. “Every health system reflects a series of ethical assumptions. In Mexico’s case, our values were centered on social inclusion, equality of opportunity, financial justice, individual autonomy, and social responsibility.”

Other Institute for Bioethics participants included Sergio Litewka, M.D., M.P.H., director of the Institute’s International Programs; Rosario Isasi, J.D., M.P.H., assistant professor in the Dr. John T. Macdonald Foundation Department of Human Genetics; Adriane Gelpi, Ph.D., M.P.H., assistant professor in the Department of Public Health Sciences; and postdoctoral fellows Katlein França, M.D., Ph.D.; and Patrice Persad, Ph.D.

Visiting attendees came from Argentina, Australia, Belgium, Canada, Chile, Ghana, Kenya, the Netherlands, Pakistan, Singapore, South Africa, South Korea, Switzerland and the United States.