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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