Patients aren’t willing to share their health data with tech corporations, unless they can get $100,000 for it.Nearly all patients are unwilling to share their health data with large technology companies for free, with most saying they’d demand upwards of $100,000 for their coveted health records, according to data from the University of Chicago Booth School of Business and Northwestern University’s Kellogg School of Business.
This finding comes as the healthcare industry grapples with big tech companies and their emergence in the healthcare sector. The likes of Google, Amazon, and Facebook have all announced their own forays into healthcare technology, and questions have arisen about how these companies have developed their tools.
“Algorithms without data are useless; therefore, corporations need to have access to medical records,” writers from the Booth School of Business’s blog, ProMarket, wrote in a new post.
The blog specifically tackles the question of whether patients are willing to share their medical data for the sake of large technology corporations developing new healthcare tools. The answer, the post authors said, is an overwhelming, “no.”
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Looking at data from the Booth/Kellogg School Financial Trust Index, which gauged consumer trust across multiple industries, the researchers found that 93 percent of all Americans would be unwilling to share their medical information with technology companies.
And while some patients said they’d be open to attaching a price tag to their medical data, most said their unwillingness to share their medical records is a matter or principle. Overall, 9.9 percent of respondents said they’d share their medical information, but not for free. Eighty-eight percent said they would not share their health information at all.
That figured changed once the survey administrators started proposing specific price points for patient data, however.
Just under 27 percent of respondents said they would be open to sharing their own health records for less than $1,000, while 13 percent were willing to do so for between $1,000 and $10,000. Just below 10 percent of respondents were willing to share their health information for between $10,000 and $100,000.
And just about 50 percent of patients said it would take $100,000 or more to be interested in sharing their medical information with a large technology company.
“According to the FTI Survey results, if Americans are asked to share their medical data for free with a tech company, they would decline,” the post authors said. “If they agreed to sell the data, the cost for the company would be prohibitive, and the health care industry’s profitability for tech corporations would immediately disappear.”
Survey responses were based on a hypothetical situation in which Facebook would use patient data to develop a new health tool. No such proposition has been made, at least not publicly, but life imitates art, and this situation did come to the forefront shortly after the survey was administrated.
In November 2019, the Wallstreet Journal reported that Google and health system Ascension had created a patient data sharing partnership, dubbed “Project Nightingale.” The deal had not yet been inked before the Wallstreet Journal broke the story, but thus far Google had received access to nearly 50 million people’s health information.
The news caused a furor in consumer circles, calling into question the ethics of using deidentified patient data to help develop new tools for technology groups. Critics said the deal was a breach of patient trust, as neither patients nor all providers were made privy of the situation.
Google followed up several days later, outlining the business associate agreement it had with Ascension.
“To deliver such a tool to providers, the system must operate on patients’ records,” David Feinberg, MD, the head of Google Health, said in a blog post. “This is what people have been asking about in the context of our Ascension partnership, and why we want to clarify how we handle that data.”
Feinberg specifically outlined the business associate agreement (BAA) established between Google and Ascension, and the privacy concerns associated with such a deal. As is fundamental to all BAAs under HIPAA regulations, patient data cannot be used for any purpose other than those outlined in the agreement. This means Google cannot, and Feinberg said has not, used patient data for any type of advertisement.
But patients nonetheless are resistant to the idea of a Google – or Facebook or Amazon, for that matter – using their medical records for the sake of research, this latest news from Booth/Kellogg School shows.
Patients do welcome some data sharing, separate surveys show, but mostly with their trusted healthcare organizations. An August 2019 survey showed that most patients are okay with data sharing as a part of a precision medicine project, for instance.
Another 2019 survey showed that patients approve with other providers within an organization accessing patient data for clinical quality improvement projects, so long as they receive an explicit request for permission. Patients also want to discuss these situations with their personal providers first.
As new entrants continue to come into the healthcare space, this question is sure to persist. The key, most experts agree, is understanding patient preferences for data sharing, asking patients about their data sharing concerns, and then proceeding accordingly.
Source: Patient Engagement Hit