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He is director of The Wilmer Eye Institute, The Johns Hopkins University School of Medicine, Baltimore, and chief medical editor of Ophthalmology Times.
Google-Ascension deal ignites private data debate
“It is a capital mistake to theorize before you have all the evidence.” – Sherlock Holmes, A Study in Scarlet
I was invited to participate in a recent panel about emerging trends in the future of healthcare. Artificial intelligence, telemedicine, gene therapy, and immuno-oncology are all fascinating scientific advances that people like to think about.
As we enter another election cycle, some politicians are calling for dramatic overhauls of the U.S. healthcare system. This includes price controls and European-style, mandatory single-payer governmental insurance (“Medicare for All”), which suggest the possibility of enormous change in how this huge industry works.
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The panel discussion was moving along in a reasonable way and the audience of a few hundred seemed to be listening closely. Each panelist would address the question asked of him or her and the room was otherwise fairly quiet. If the moderator or a panelist inserted a little humor into the discussion, the audience would laugh politely, but that was about it.
Then a question was asked of one of my fellow panelists: “There is tremendous interest in many sectors (insurance companies, pharmaceutical companies, researchers, etc.) in obtaining and analyzing the healthcare data of large numbers of patients. My question to you is: ‘Who owns that data?’”
The panelist, an executive of a medical device manufacturer, responded quickly. “Patients own their data.” After a one-second pause, the audience, previously quiet, burst into loud applause.
“People clearly care a great deal about this issue,” was my immediate thought.
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The recent revelation about the existence of “Project Nightingale” and the ensuing uproar were both interesting and predictable. The Wall Street Journal reported that Google began the project in secret last year with St. Louis-based Ascension, a Catholic chain of 2,600 hospitals, doctors’ offices and other facilities and the second largest health system in the United States.
“The data involved in the initiative encompasses lab results, doctor diagnoses and hospitalization records, among other categories, and amounts to a complete health history, including patient names and dates of birth. Neither patients nor doctors have been notified. At least 150 Google employees already have access to much of the data on tens of millions of patients.”
As I understand it, based on news reports I have read, Ascension’s position maintains that analyzing the data using artificial intelligence and machine learning will result in strategies to ultimately improve care of patients. The assertion is that the use of the data for this purpose is legal and ethical, and the companies did not need to secure permission from patients to start mining the data and did not need to inform its doctors that this huge data mining project was under way.
Not everyone else is so sure. According to Ellen Clayton, professor biomedical ethics at Vanderbilt University, “the optics are bad.”
“The legal argument is tenuous,” she said. “Ethically, this is a bad strategy. They need to tell people what they are doing.”
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U.S. senators-including Sen. Bill Cassidy, a Louisiana Republican who is a physician-are expressing concern about the program, calling for a moratorium or investigation or proposing legislation.
Again, according to The Wall Street Journal, Google wouldn’t disclose the financial terms of the deal with Ascension. Nor would it say who at Google is allowed to access the data.
Let’s presume the motives of all involved in Project Nightingale are pure. That does not change the fact that Americans do not want their data shared in secret deals. Having this program come to light this way was a mistake by both corporations.
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1. Google’s ‘Project Nightingale’ Gather Personal Health Data on Millions of Americans. WSJ. Nov 11, 2019