By Anna Wilde Mathews 

Technology and health-care companies are competing to develop new ways for consumers to corral their digital health data, prompting questions about data privacy and control.

Companies such as Apple Inc. and UnitedHealth Group Inc. are rolling out online tools that consumers can use to bring together health information now siloed in the systems of hospitals, doctors and insurers. These personal health records aim to consolidate information like diagnoses and lab results for consumers to access easily via their smartphones or computers.

The rush to create personal health records was spurred by recent Trump administration moves to expand access to such data. Other tech and health firms working to create the records include giant insurer Cigna Corp., companies such as Epic Systems Corp. and Cerner Corp. that make hospitals' electronic medical records, and a growing array of smaller startups such as Seqster and PicnicHealth.

These tech and health companies will face different issues as they handle data that are both highly personal and potentially valuable to companies ranging from drugmakers to artificial-intelligence firms.

The federal health-privacy law known as the Health Insurance Portability and Accountability Act, or HIPAA, imposes requirements on companies to protect health data. It applies to physicians and health-care companies, including hospitals and insurers, and third parties that work for them.

But tech firms that get health data directly from consumers -- including when they act on consumers' behalf to get information from hospitals or doctors -- aren't generally subject to HIPAA. Their use of consumer data is overseen primarily by the Federal Trade Commission, which focuses largely on whether companies live up to their own privacy policies. Data and health-law experts say transparency on that point is going to be a key issue for consumers.

"Most laypeople think all of their health information is covered by HIPAA, and it's not," said Joy Pritts, a consultant who is a former federal health-privacy official.

Technology companies that aren't generally regulated under HIPAA say they use consumers' health data only with permission. Deven McGraw, a former federal health official who is now an executive at Ciitizen, a startup creating a consumer health-records tool, said one question is how much detail consumers should get. Ciitizen "wants to give patients complete control over their information," including ensuring they are compensated if their data is sold, she said.

Apple said it is closely focused on consumers' privacy and gets no access to data in the Health Records tool it launched last year. Data won't leave the consumer's phone. Apple said health apps it approves from other companies can't use consumer health data "for advertising, marketing, or other use-based data mining purposes, other than improving health management" or for research, and must get permission.

Health companies say they are used to meeting the requirements of HIPAA, and have earned consumers' trust. The law imposes strict controls over the use of health data that is identified with a specific consumer, though those limits don't apply if a company strips out certain details to anonymize the information.

The Trump administration recently proposed new rules on consumers' access to their health information. The rules, which could become final later this year, are supposed to help unlock digital data held in hospitals' health records as well as some insurer claims.

"It is removing friction points in a lot of different ways," said Karen DeSalvo, a professor at the University of Texas at Austin who was a health-technology official in the Obama administration. "It's a big signal to the health sector."

The Department of Health and Human Services also is stepping up its focus on existing requirements under law that consumers should be able to get their own health data.

"We plan more aggressive enforcement of patients' right of access to their own information," said Roger Severino, director of the HHS office for civil rights.

The opportunity to exploit that access is setting up a competition among companies from widely differing backgrounds to win consumers' loyalty. Technology companies say their tools are simple and intuitive to use.

Apple's Health Records tool pulls data from the electronic health records of around 240 health-care providers, focusing on seven major types of information, including prescriptions and allergies. Health Records also gets data from major lab companies. The tool continually updates the information automatically. However, it doesn't include details such as doctor notes, or some other sources of data such as insurance claims.

Apple vice president Kevin Lynch said the company is "just getting started on this," and "once you lay a foundation, you can do all sorts of things in the future."

Dow Jones & Co., publisher of The Wall Street Journal, has a commercial agreement to supply news through Apple services.

Some startups, including PicnicHealth and Seqster, promise to pull in near-comprehensive health information. "It really empowers patients to collect their health data," Seqster Chief Executive Ardy Arianpour said. "The current options out there are not sufficient or complete." Seqster doesn't sell its app directly to consumers but says it is in talks with major companies to offer it to their customers.

Health companies argue they are best positioned to integrate consumers' health information with recommendations and help accessing care. With a major health plan and pharmacy-benefit manager "you can surround those patients with a level of service and a degree of sophistication that few can replicate," said Steve Miller, chief clinical officer of Cigna, which also owns Express Scripts, which manages pharmacy benefits for employers and other clients. Developing a digital health portal for consumers is part of Cigna's future plans, he said, but the company declined to give a specific time frame.

UnitedHealth says its individual health record will roll out later this year, to around 50 million people who have health coverage through the company. The new record, through a website and app, will draw in data from insurance claims, doctor and hospital records, and other sources. UnitedHealth said it "will help people link the different sources of information relevant to their care, while also adding context and meaning to improve the experience."

Both UnitedHealth and Cigna say they aim for a consumer to be able to retain access to health records even if the consumer switches insurers.

Write to Anna Wilde Mathews at anna.mathews@wsj.com

 

(END) Dow Jones Newswires

April 02, 2019 05:44 ET (09:44 GMT)

Copyright (c) 2019 Dow Jones & Company, Inc.
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