Adjusting for life in the world of Big Data

The invitation offered a “free gourmet meal exclusively for people with neuropathy symptoms.”

Lynda Adams wasn’t upset to receive such a pitch, even though she didn’t have neuropathy, a diabetes-related nerve disorder, and even though the meal, at a chain restaurant in Costa Mesa, didn’t look particularly gourmet.

What had Adams, 68, concerned was how her name and address were obtained. When she tried to find out from the chiropractor holding the event, she got nowhere.

“All they’d say was that I was probably referred by a loved one,” the Newport Beach resident told me. “But I can say categorically that none of my family members would do something like that.”

Adams’ experience illustrates life in the world of Big Data, where personal information is routinely bought and sold without consumers’ knowledge or say-so.

And if you have the temerity to ask where a business acquired your info, you get stonewalled or, worse, told it’s none of your business.

“They don’t want you to know how extensively your personal information is spread around,” said Lee Tien, senior staff attorney for the Electronic Frontier Foundation, a San Francisco digital rights organization. “They have no interest in consumers understanding the shadowy world of data brokers.”

Data brokers are companies that “collect and store billions of data elements covering nearly every U.S. consumer,” according to a recent report from the Federal Trade Commission. The report included a call for greater regulation of these firms.

Adams’ curiosity was aroused because the seminar invitation she received from chiropractor Philip Straw, who has four Optimal Health offices in Southern California, included her middle initial.

She said she never uses her initial for magazine subscriptions or other routine transactions that typically land consumers on companies’ mailing lists.

“I don’t mind the big mass mailings you receive,” Adams said. “You just throw them away. But when it has an appellation you don’t normally use, that’s very creepy.”

It is, as is the notion of a healthcare professional — and in the case of some chiropractors, I use the term loosely — targeting you for a disorder you don’t have.

I attended a seminar several years ago similar to the ones Straw holds each month. The Orange County chiropractor hosting that event, like Straw, offered a free meal as part of his sales pitch for how “balancing the body” can rid people of diabetes.

What wasn’t revealed at the seminar was that this body-balancing regimen could cost as much as $15,000 in visits to the chiropractor’s clinic.

On his website, Straw describes himself as exclusively treating “patients with neuropathy and diabetes.” He says his “Straw Protocol” employs light, vibration and “an electronic device” that “delivers electronic, biologically effective signals” to heal damaged nerves.

People with Type 2 diabetes, which is frequently associated with obesity, can benefit from any program involving weight loss and exercise. There is no cure for Type 1 diabetes, which is often genetic and requires treatment with insulin.

Straw was cited by the state Board of Chiropractic Examiners in 2012 for advertising his services in a potentially deceptive manner and for portraying himself as a neuropathy expert. The regulatory agency “does not recognize such expertise” on Straw’s part, the citation said.

Robert Puleo, executive officer of the Board of Chiropractic Examiners, said Straw paid a $500 fine and has faced no other complaints or disciplinary action.

The letter Adams received made no claims as to Straw’s knowledge of diabetic complications, although it said she’d “learn the latest about neuropathy.”

She said that when she called the number provided in the letter, she ended up reaching a firm that was organizing the seminar. No one there could say how Adams’ contact information had been obtained.

So she called Straw’s main office in Lake Forest. Adams said a receptionist told her that her information had “just entered the system on July 31.” Adams took this as evidence that Straw or one of his workers had played a role in compiling the contact list for the seminar.

But the only explanation Adams was offered was the one about a referral from a loved one — a seemingly bogus claim considering that she has no siblings and that neither her husband nor her two adult offspring said they reached out to Straw on her behalf.

A more likely scenario, said Tien at the Electronic Frontier Foundation, is that Straw’s office contracted with a data broker for a list of Orange County residents who met certain criteria — that is, people of a certain age who may be facing problems with their legs or feet.

Adams said she had knee surgery about a year and a half ago. She said she uses her middle initial only for visits to the doctor and prescription drugs.

Somehow, Tien speculated, this information might have slipped past federal medical-privacy rules. “It’s hard to know how data brokers get their information,” he said.

Federal regulators have called upon lawmakers to require that data brokers reveal what they know about consumers as well as their sources of information. Officials also want consumers to have the choice to opt out of having their personal information sold.

The Data Broker Accountability and Transparency Act, introduced in February by Sen. John D. Rockefeller IV (D-W.Va.), has gone nowhere in the Senate.

I tried to ask Straw how he got his hands on Adams’ contact info but he didn’t return my calls. A worker in his office said he was “a very busy man.”

She also declined to provide me with Straw’s email address.

“We don’t give out personal information,” she said.

I wonder: Is there a chiropractic cure for irony?

David Lazarus’ column runs Tuesdays and Fridays. He also can be seen daily on KTLA-TV Channel 5 and followed on Twitter @Davidlaz. Send your tips or feedback to [email protected].