In an­swer­ing bad re­views, doc­tors do harm, pa­tients say

Some health providers post de­tails pro­tected by fed­eral pri­vacy law

The Washington Post - - CAM­PAIGN 2016 - BY CHARLES ORN­STEIN ProPublica

to re­but neg­a­tive re­views on Yelp and other sites, some health providers have vi­o­lated fed­eral pri­vacy laws pro­tect­ing pa­tients.

Burned by neg­a­tive re­views, some health providers are cast­ing their pa­tients’ pri­vacy aside and shar­ing in­ti­mate de­tails on­line as they try to re­but crit­i­cism.

In the course of these ar­gu­ments — which have spilled out pub­licly on rat­ings sites such as Yelp — doc­tors, den­tists, chi­ro­prac­tors and mas­sage ther­a­pists, among oth­ers, have di­vulged de­tails of pa­tients’ di­ag­noses, treat­ments and idio­syn­cra­sies.

One Wash­ing­ton state den­tist turned the ta­bles on a pa­tient who blamed him for the loss of a mo­lar: “Due to your clench­ing and grind­ing habit, this is not the first mo­lar tooth you have lost due to a frac­tured root,” he wrote. “This tooth is no dif­fer­ent.”

In Cal­i­for­nia, a chi­ro­prac­tor pushed back against a mother’s claims that he mis­di­ag­nosed her daugh­ter with sco­l­io­sis. “You brought your daugh­ter in for the exam in early March 2014,” he wrote. “The exam iden­ti­fied one or more of the signs I men­tioned above for sco­l­io­sis. I ab­so­lutely rec­om­mended an x-ray to de­ter­mine if this con­di­tion ex­isted; this x-ray was at no additional cost to you.”

And a Cal­i­for­nia den­tist scolded a pa­tient who ac­cused him of mis­di­ag­nos­ing her. “I looked very closely at your ra­dio­graphs and it was ob­vi­ous that you have cav­i­ties and gum dis­ease that your other den­tist has over­looked. . . . You can live in a world of denial and sim­ply be­lieve what you want to hear from your other den­tist or make an ed­u­cated and in­formed de­ci­sion.”

Health pro­fes­sion­als are adapt­ing to a harsh re­al­ity in which con­sumers rate them on sites such as Yelp, Vi­tals and RateMDs much as they do restau­rants, ho­tels and spas. The vast ma­jor­ity of re­views are pos­i­tive. But in try­ing to re­spond to neg­a­tive ones, some providers ap­pear to be vi­o­lat­ing the Health In­sur­ance Porta­bil­ity and Ac­count­abil­ity Act, the fed­eral pa­tient pri­vacy law known as HIPAA. The law for­bids them from dis­clos­ing any pa­tient health in­for­ma­tion with­out per­mis­sion.

Yelp has given ProPublica un­prece­dented ac­cess to its trove of pub­lic re­views — more than 1.7 mil­lion in all — al­low­ing us to search them by key­word. Us­ing a tool de­vel­oped by the Depart­ment of Com­puter Sci­ence and En­gi­neer­ing at the New York Univer­sity Tan­don School of En­gi­neer­ing, we iden­ti­fied more than 3,500 one-star re­views (the low­est) in which pa­tients men­tion pri­vacy or HIPAA. In dozens of in­stances, re­sponses to com­plaints about med­i­cal care turned into dis­putes over pa­tient pri­vacy.

The pa­tients af­fected say they’ve been dou­bly in­jured — first by poor ser­vice or care and then by the dis­clo­sure of in­for­ma­tion they con­sid­ered pri­vate.

The shock of ex­po­sure can be ef­fec­tive, prompt­ing pa­tients to back off.

“I posted a neg­a­tive re­view” on Yelp, a client of a Cal­i­for­nia den­tist wrote in 2013. “After that, she posted a re­sponse with de­tails that in­cluded my per­sonal den­tal in­for­ma­tion. ... I re­moved my re­view to pro­tect my med­i­cal pri­vacy.”

The con­sumer com­plained to the Of­fice for Civil Rights within the U.S. Depart­ment of Health and Hu­man Ser­vices, which en­forces HIPAA. The of­fice warned the den­tist about post­ing per­sonal in­for­ma­tion in re­sponse to Yelp re­views. It is in­ves­ti­gat­ing a New York den­tist for di­vulging per­sonal in­for­ma­tion about a pa­tient who com­plained about her care, ac­cord­ing to a let­ter re­viewed by ProPublica.

The of­fice couldn’t say how many com­plaints it has re­ceived in this area be­cause it doesn’t track com­plaints this way. ProPublica has pre­vi­ously re­ported about the agency’s his­toric in­abil­ity to an­a­lyze its com­plaints and iden­tify re­peat HIPAA vi­o­la­tors.

Deven McGraw, the of­fice’s deputy direc­tor of health in­for­ma­tion pri­vacy, said health pro­fes­sion­als re­spond­ing to on­line re­views can speak gen­er­ally about the way they treat pa­tients but must have per­mis­sion to dis­cuss in­di­vid­ual cases. Just be­cause pa­tients have rated their health provider pub­licly doesn’t give their health provider per­mis­sion to rate them in re­turn.

“If the com­plaint is about poor pa­tient care, they can come back and say, ‘I pro­vide all of my pa­tients with good pa­tient care’ and ‘ I’ve been re­viewed in other con­texts and have good re­views,’ ” McGraw said. But they can’t “take those ac­cu­sa­tions on in­di­vid­u­ally by the pa­tient.”

McGraw pointed to a 2013 case in Cal­i­for­nia in which a hospi­tal was fined $275,000 for dis­clos­ing in­for­ma­tion about a pa­tient to the me­dia with­out per­mis­sion, al­legedly in re­tal­i­a­tion for the pa­tient com­plain­ing to the me­dia about the hospi­tal.

Aaron Schur, Yelp’s se­nior direc­tor of lit­i­ga­tion, said most re­views of doc­tors and den­tists aren’t about the ac­tual health care de­liv­ered but rather their of­fice wait, the front of­fice staff, billing pro­ce­dures or bed­side man­ner. Many health providers are care­ful and ap­pro­pri­ate in re­spond­ing to on­line re­views, en­cour­ag­ing pa­tients to con­tact them off­line or apol­o­giz­ing for any per­ceived slights. Some don’t re­spond at all.

“There’s cer­tainly ways to re­spond to re­views that don’t im­pli­cate HIPAA,” Schur said.

In 2012, Univer­sity of Utah Health Care in Salt Lake City was the first hospi­tal sys­tem in the coun­try to post pa­tient re­views and com­ments on­line.

The sys­tem, which had to over­come doc­tors’ re­sis­tance to be­ing rated, found pos­i­tive com­ments far out­num­bered neg­a­tive ones.

“If you white­wash com­ments, if you only put those that are highly pos­i­tive, the pub­lic is very savvy and will con­sider that to be only ad­ver­tis­ing,” said Thomas Miller, chief med­i­cal of­fi­cer for the Univer­sity of Utah Hos­pi­tals and Clin­ics.

Un­like Yelp, the Univer­sity of Utah does not al­low com­ments about a doc­tor’s med­i­cal com­pe­tency and it does not al­low physi­cians to re­spond to com­ments.

In dis­cussing their bat­tles over on­line re­views, pa­tients said they’d turned to rat­ings sites for clo­sure and in the hope that their ex­pe­ri­ences would help oth­ers seek­ing care. Their providers’ re­sponses, how­ever, left them with a lin­ger­ing sense of lost trust.

An­gela Gri­jalva brought her then-12-year-old daugh­ter to Max­i­mize Chi­ro­prac­tic in West Sacra­mento, Calif., a cou­ple years ago for an exam. In a one-star re­view on Yelp, Gri­jalva al­leged that chi­ro­prac­tor Tim Ni­choll led her daugh­ter to “be­lieve she had sco­l­io­sis and ur­gently needed x-rays, which could be per­formed at her next ap­point­ment. . . . My daugh­ter cried all night and had a tough time con­cen­trat­ing at school.”

But it turned out her daugh­ter did not have sco­l­io­sis, Gri­jalva wrote. She en­cour­aged par­ents to stay away from the of­fice.

Ni­choll replied on Yelp, ac­knowl­edg­ing that Gri­jalva’s daugh­ter was a pa­tient (a dis­clo­sure that is not al­lowed un­der HIPAA) and dis­cussing the pro­ce­dures he per­formed on her and her con­di­tion, though he said he could not dis­close specifics of the di­ag­no­sis “due to pri­vacy and pa­tient con­fi­den­tial­ity.”

“The next day you brought your daugh­ter back in for a ver­bal re­view of the x-rays and I in­formed you that the x-rays had iden­ti­fied some is­sues, but the good news was that your daugh­ter did not have sco­l­io­sis, great news!” he re­counted.

“I pro­ceeded to ad­just your daugh­ter and the ad­just­ment went very well, as did the en­tire ap­point­ment; you made no men­tion of a ‘mis­di­ag­no­sis’ or any other con­cern.”

In an in­ter­view, Gri­jalva said Ni­choll’s re­sponse “vi­o­lated my daugh­ter and her pri­vacy.”

“I wouldn’t want an­other par­ent, an­other child to go through what my daugh­ter went through: the panic, the stress, the fear,” she added.

Ni­choll de­clined a re­quest for com­ment. “It just doesn’t seem like this is worth my time,” he said. His prac­tice has mixed re­views on Yelp, but more pos­i­tive than neg­a­tive.

A few years ago, Marisa Speed posted a re­view of North Val­ley Plas­tic Surgery in Phoenix after her then-3-year-old son re­ceived stitches there for a gash on his chin. “Half-way through the pro­ce­dure, the doc­tor seemed flus­tered with my cry­ing child,” she wrote. “At this point the doc­tor was more up­set and he ended up throw­ing the in­stru­ments to the floor. I un­der­stand that deal­ing with kids re­quires ex­tra ef­fort, but if you don’t like to do it, don’t even wel­come them.”

An em­ployee named Chase replied on the busi­ness’s be­half: “This pa­tient pre­sented in an ag­i­tated and un­con­trol­lable state. De­spite our best ef­forts, this pa­tient was scream­ing, cry­ing, in­con­solable, and a dan­ger to both him­self and to our staff. As any par­ent that has raised a young boy knows, they have the strength to cause harm.”

Speed and her hus­band com­plained to the Of­fice for Civil Rights. “You may wish to re­move any spe­cific in­for­ma­tion about cur­rent or for­mer pa­tients from your Web-blog,” the of­fice wrote in an Oc­to­ber 2013 let­ter to the surgery cen­ter.

In an email, a rep­re­sen­ta­tive of the surgery cen­ter de­clined to com­ment. “Ev­ery­one that was di­rectly in­volved in the in­ci­dent no longer works here.

The nurse on this case left a year ago, the sur­geon in the case re­tired last month, and the ad­min­is­tra­tor left a few years ago,” he wrote.

Re­views of North Val­ley Plas­tic Surgery are mixed on Yelp.

Health providers have tried a host of ways to try to com­bat neg­a­tive re­views. Some have sued their pa­tients, at­tract­ing a tor­rent of at­ten­tion but scor­ing few, if any, le­gal suc­cesses. Oth­ers have begged pa­tients to re­move their com­plaints.

Jef­frey Se­gal, a one­time critic of re­view sites, now says doc­tors need to em­brace them. Be­gin­ning in 2007, Se­gal’s com­pany, Med­i­cal Jus­tice, crafted con­tracts that health providers could give to pa­tients ask­ing them to sign over the copy­right to any re­views, which al­lowed providers to de­mand that neg­a­tive ones be re­moved. But after a law­suit, Med­i­cal Jus­tice stopped rec­om­mend­ing the con­tracts in 2011.

Se­gal said he has come to be­lieve that re­views are valu­able and that providers should en­cour­age pa­tients who are sat­is­fied to post pos­i­tive re­views and should re­spond — care­fully — to neg­a­tive ones.

“For doc­tors who get bent out of shape to get rid of neg­a­tive re­views, it’s a de­nom­i­na­tor prob­lem,” he said. “If they only have three re­views and two are neg­a­tive, the de­nom­i­na­tor is the prob­lem. . . . If you can fig­ure out a way to cul­ti­vate re­views from hun­dreds of pa­tients rather than a few pa­tients, the prob­lem is solved.”

MAX WHIT­TAKER/SPE­CIAL TO PROPUBLICA AND THE WASH­ING­TON POST

After her daugh­ter’s chi­ro­prac­tor re­sponded to a neg­a­tive Yelp re­view, An­gela Gri­jalva of Sacra­mento said she “wouldn’t want an­other par­ent, an­other child to go through what my daugh­ter went through.”

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