An­other pri­vacy sur­vey /

HHS plans sur­vey on IT pri­vacy, se­cu­rity is­sues

Modern Healthcare - - Front Page - Joseph Conn

HHS plans to fi­nance a pub­lic opin­ion sur­vey on at­ti­tudes about health in­for­ma­tion pri­vacy and se­cu­rity, but sev­eral pri­vacy ad­vo­cates are won­der­ing why bother, given the pre­dictabil­ity of the re­sults from pre­vi­ous sur­veys.

Last month, the Of­fice of the Na­tional Co­or­di­na­tor for Health In­for­ma­tion Tech­nol­ogy at HHS posted without fan­fare a pub­lic no­tice re­gard­ing its in­tent to con­duct for the sur­vey un­der the project ti­tle, “At­ti­tudes To­ward Elec­tronic Health In­for­ma­tion Ex­change and As­so­ci­ated Pri­vacy and Se­cu­rity As­pects.”

Ac­cord­ing to HHS, “Based on find­ings from a com­pre­hen­sive lit­er­a­ture re­view, lit­tle is known about in­di­vid­u­als’ at­ti­tudes to­ward elec­tronic health in­for­ma­tion ex­change and the ex­tent to which they are in­ter­ested in de­ter­min­ing by whom and how their health in­for­ma­tion is ex­changed.”

The ONC noted it plans to ob­tain a rep­re­sen­ta­tive, na­tion­wide sam­ple of opin­ion based on com­puter-as­sisted tele­phone in­ter­views con­ducted over an eight-week pe­riod. The ONC also plans to hold a Web sem­i­nar prior to post­ing the fi­nal sur­vey re­port on­line—at

The dec­la­ra­tion that the ONC con­ducted a “com­pre­hen­sive lit­er­a­ture re­view” but found that “lit­tle is known” about pub­lic at­ti­tudes to­ward pri­vacy and se­cu­rity in health in­for­ma­tion ex­change left sev­eral health pri­vacy ad­vo­cates puz­zled.

Pam Dixon, founder and ex­ec­u­tive di­rec­tor of the World Pri­vacy Fo­rum, termed the HHS con­clu­sion “an in­trigu­ing re­sult from a sup­pos­edly com­pre­hen­sive lit­er­a­ture sur­vey.”

Off the top of her head, Dixon rat­tled off the work of the Cal­i­for­nia Health­Care Foun­da­tion and the Na­tional Com­mit­tee on Vi­tal and Health Statis­tics as ex­am­ples of re­cent health­care pri­vacy stud­ies that she thought might be per­ti­nent to HHS’ line of in­quiry.

Mark Rothstein is the found­ing di­rec­tor of the In­sti­tute for Bioethics, Health Pol­icy and Law at the Uni­ver­sity of Louisville (Ky.) School of Medicine. He is a past mem­ber of the NCVHS, an HHS ad­vi­sory body, and from 1999 through 2008 served as chair­man of the NCVHS sub­com­mit­tee on pri­vacy and con­fi­den­tial­ity.

In June 2006, the NCVHS sub­mit­ted a re­port to then-HHS Sec­re­tary Mike Leav­itt ti­tled Pri­vacy and Con­fi­den­tial­ity in the Na­tion­wide Health In­for­ma­tion Net­work mak­ing 26 rec­om­men­da­tions. In it was in­cluded a def­i­ni­tion of health in­for­ma­tion pri­vacy as “an in­di­vid­ual’s right to con­trol the ac­qui­si­tion, uses or dis­clo­sures of his or her iden­ti­fi­able health data.”

Rothstein, in an in­ter­view for this story, con­curs, in part, with Dixon.

“There have been a num­ber of stud­ies on the is­sue of the elec­tronic health record,” Rothstein says. “I don’t know how many stud­ies on the nar­rower is­sue of health in­for­ma­tion ex­change.”

In ad­di­tion to its place in the NCVHS’ work, pa­tient con­cern over health­care in­for­ma­tion pri­vacy and pa­tients’ ex­pec­ta­tion of a right to ex­er­cise con­trol over who sees their health in­for­ma­tion have been re­cur­rent—al­most uni­ver­sal—themes in pub­lic opin­ion sur­veys, Rothstein says. Those two well-doc­u­mented, base­line be­liefs make the ONC’s quest for more in­for­ma­tion on the sub­ject a bit puz­zling.

“The only thing I can think of is they’ve got in their minds some spe­cific thing they want to study that no­body else has done,” Rothstein says. “That’s the only thing I can think of that would make sense, so oth­er­wise, why rein­vent the wheel be­cause pretty much all of the stud­ies say the same thing.”

Among sev­eral other stud­ies, HHS’ Agency for Health­care Re­search and Qual­ity last sum­mer con­tracted for and re­leased its 75-page Fi­nal Re­port: Con­sumer En­gage­ment in De­vel­op­ing Elec­tronic Health In­for­ma­tion Sys­tems.

Based on knowl­edge gleaned from 20 fo­cus groups held across the coun­try, the AHRQ study con­cludes that a ma­jor­ity of par­tic­i­pants want to “own” their health data and de­cide what goes into and who has ac­cess to their med­i­cal records. There was “near uni­ver­sal agree­ment in all the groups” that con­sumers should have a say in how their data are shared and used, ac­cord­ing to the AHRQ re­port.

The re­port states that “the pub­lic is very con­cerned about the pri­vacy and se­cu­rity of their med­i­cal data. With only a few ex­cep­tions, this con­cern is a mat­ter of prin­ci­ple—a feel­ing that one’s med­i­cal data is “no one else’s busi­ness.” In ad­di­tion to its own work, AHRQ re­searchers also con­ducted a re­view of pre­vi­ous stud­ies done by oth­ers, con­clud­ing, “Past sur­veys have con­firmed that health­care con­sumers’ most im­por­tant con­cerns about health IT re­volve around the is­sues of pri­vacy and se­cu­rity.”

So far, HHS has not con­ceded that pa­tients should have a right to con­trol their health­care in­for­ma­tion. In De­cem­ber 2008, in the wan­ing days of the Ge­orge W. Bush ad­min­is­tra­tion, the ONC is­sued its 12-page Na­tion­wide Pri­vacy and Se­cu­rity Frame­work for Elec­tronic Ex­change of In­di­vid­u­ally Iden­ti­fi­able Health In­for­ma­tion, which ap­par­ently re­jected the NCVHS’ rec­om­men­da­tion on a pri­vacy def­i­ni­tion.

In it, the ONC de­fined pri­vacy not in terms of a pa­tient’s right to con­trol his or her in­for­ma­tion, but as, “An in­di­vid­ual’s in­ter­est in pro­tect­ing his or her in­di­vid­u­ally iden­ti­fi­able health in­for­ma­tion and the cor­re­spond­ing obli­ga­tion of those per­sons and en­ti­ties, that par­tic­i­pate in a net­work for the pur­poses of elec­tronic ex­change of such in­for­ma­tion, to re­spect those in­ter­ests through fair in­for­ma­tion prac­tices.”

Jodi Daniel, di­rec­tor of the Of­fice of Pol­icy and Plan­ning at ONC, says RTI In­ter­na­tional, the con­trac­tor hired by HHS to per­form the work to cre­ate the Health In­for­ma­tion Se­cu­rity and Pri­vacy Col­lab­o­ra­tive, per­formed the scan of pri­vacy and se­cu­rity lit­er­a­ture and will com­plete the sur­vey un­der the “tail end” of a con­tract that dates back to 2006. The new sur­vey was deemed nec­es­sary to gain a larger scale than the AHRQ study and to more specif­i­cally ad­dress in­for­ma­tion ex­change, she says.

Steven Pos­nack, the ONC project of­fi­cer on the sur­vey, says the sur­vey will cost ap­prox­i­mately $400,000, in­clud­ing data anal­y­sis and re­ports. Pos­nack said he hopes to have a fi­nal re­port by Oct. 1.

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