The long and wind­ing road to pa­tient data in­ter­op­er­abil­ity

Modern Healthcare - - NEWS - By Rachel Z. Arndt

Most of the time when Dr. James Tcheng gets a new pa­tient from out­side of Duke Health, he starts with a bun­dle of pa­per. Af­ter his sec­re­tary re­ceives a pa­tient’s records—ei­ther di­rectly from an­other doc­tor’s of­fice or af­ter a re­quest is faxed—and opens them, Tcheng goes through the in­for­ma­tion, with a sheet of 8½ x 11 pa­per at his side for tak­ing notes. He starts, usu­ally, with the sum­mary notes. Some­times, al­most all of what he reads is ir­rel­e­vant. But he must go through ev­ery­thing nev­er­the­less, mak­ing sure he misses noth­ing.

“It’s one of the things that causes me to turn over in bed at night,” said Tcheng, an in­ter­ven­tional car­di­ol­o­gist at Duke Health. “I won­der, did I miss some­thing? What should I have been look­ing for? What wasn’t even said?”

In­ter­op­er­abil­ity, that oft-promised, long sought-af­ter state of data flu­id­ity, has yet to fully ar­rive in pa­tient records. Too of­ten, pa­tient data move only af­ter some­one—a pa­tient, a nurse, a doc­tor—makes a few phone calls and faxes, stum­bling a few times.

Bet­ter stan­dards, al­liances among ven­dors, and new in­ter­de­pen­dent tech­nolo­gies prom­ise to change that, mak­ing data travel with pa­tients as they move through the health­care sys­tem, thereby re­duc­ing the bur­den on pro-

“It’s one of the things that causes me to turn over in bed at night. I won­der, did I miss some­thing? What should I have been look­ing for? What wasn’t even said?” Dr. James Tcheng, an in­ter­ven­tional car­di­ol­o­gist at Duke Health

viders and achiev­ing the pa­tient-cen­tric part of the triple aim.

But those changes may be more the­o­ret­i­cal at this point than ac­tual, and they’ve yet to be adopted across an in­dus­try whose mem­bers are try­ing to keep up with new soft­ware and stan­dards—stan­dards that them­selves are evolv­ing to be­come more use­ful. Af­ter all, in­ter­op­er­abil­ity isn’t just the abil­ity to trans­mit in­for­ma­tion, it’s the abil­ity to use the in­for­ma­tion, too.

Just 6% of providers sur­veyed by KLAS Re­search said in­for­ma­tion they get from out­side or­ga­ni­za­tions is rea­son­ably easy to lo­cate within their work­flow and “sig­nif­i­cantly ben­e­fits pa­tient care,” and less than one-third said they of­ten or al­most al­ways can ac­cess data from dif­fer­ent elec­tronic health records. Troubles arise when in­for­ma­tion is out­side the elec­tronic health record, when the for­mat­ting is clunky, and when in­for­ma­tion isn’t avail­able when it’s needed.

“We hear pretty reg­u­larly that clin­i­cians are frus­trated with the amount of time they’re spend­ing doc­u­ment­ing in­stead of tak­ing care of pa­tients,” said Bob Cash, KLAS’ vice pres­i­dent of provider re­la­tions.

Part of that frus­tra­tion stems from the fact that health data don’t of­ten travel as dis­crete pieces of in­for­ma­tion but, rather, as en­tire chunks. “Right now, EHRs are sim­ply very so­phis­ti­cated sys­tems for man­ag­ing doc­u­ments rather than be­ing pur­vey­ors of in­for­ma­tion cap­tured as data,” Tcheng said.

Mak­ing data mean­ing­ful

When EHRs do suc­cess­fully talk to one an­other and trans­mit data, it’s not just the con­ver­sa­tion that mat­ters, it’s how the con­ver­sa­tion is struc­tured. In other words, it’s one thing to be able to trans­mit data, it’s an­other to be able to trans­mit it in a way that makes the in­for­ma­tion mean­ing­ful and ac­tion­able for providers.

To make a record eas­ily un­der­stand­able, file for­mats must be stan­dard­ized. And they are, to a de­gree: The Con­sol­i­dated Clin­i­cal Doc­u­ment Ar­chi­tec­ture (C-CDA) stan­dard—which can be used to ful­fill the mean­ing­ful use Stage 2 re­quire­ments—is essen­tially a col­lec­tion of tem­plates (along with the req­ui­site cod­ing and frame­work), in­clud­ing one for doc­u­ment­ing a pa­tient’s al­ler­gies, med­i­ca­tions, prob­lem list and other in­for­ma­tion, in­clud­ing both struc­tured and un­struc­tured data.

In the end, the doc­u­ments are some­times not ter­ri­bly un­like well-or­ga­nized PDFs. So providers are of­ten left to wade through pages and pages of text to find what they’re look­ing for. “They’re big and un­wieldy,” said Micky Tri­pathi, CEO of the Mas­sachusetts eHealth Col­lab­o­ra­tive. Some providers don’t even look at them.

“We need to break away from the doc­u­ment par­a­digm of med­i­cal records and move to­ward semi-struc­tured and struc­tured in­for­ma­tion that ac­tu­ally has pieces of data man­aged as data it­self rather than doc­u­ments,” Tcheng said. But, he said, “in­ter­op­er­abil­ity isn’t just the abil­ity to move a doc­u­ment from one EHR to an­other.” When you do that, you still must know, for in­stance, to click on the tab in the EHR for “other in­for­ma­tion.” And that’s just an­other click in the seem­ing in­fini­tude of clicks providers are al­ready mak­ing.

If the Fast Health In­ter­op­er­abil­ity Re­sources stan­dard, or FHIR, were widely adopted, that could ease the bur­den, mak­ing in­ter­op­er­abil­ity less about ex­chang­ing doc­u­ments and more about ex­chang­ing dis­crete data points that can be stud­ied and an­a­lyzed by both hu­mans and com­put­ers. FHIR, which is ven­dor-neu­tral, al­lows peo­ple to trans­mit both doc­u­ments and smaller pieces of data.

“FHIR is on a tra­jec­tory to de­velop a plat­form which makes in­ter­op­er­abil­ity pos­si­ble in health sys­tems around the world,” said Dr. Charles Jaffe, CEO of stan­dards or­ga­ni­za­tion Health Level Seven In­ter­na­tional, which de­vel­oped FHIR.

It por­tends a time when data aren’t locked in sep­a­rate doc­u­ments in sep­a­rate EHRs—or in sep­a­rate file fold­ers— but are in­stead fluid, mov­ing in dis­crete el­e­ments with pa­tients as they go from provider to provider.

“Part of the is­sue now is hos­pi­tal and health sys­tems feel it’s all their records, when re­ally we’re just stew­ards,” said

Dr. Thomas Mo­ran, chief med­i­cal in­for­ma­tion ex­ec­u­tive for North­west­ern Me­mo­rial Health­Care in Chicago. “The pa­tient still ex­ists out­side of the hos­pi­tal and goes else­where, and the pa­tient needs to be able to share their in­for­ma­tion eas­ily no mat­ter where they go.”

Help­ing data move

FHIR and sim­i­lar projects are nec­es­sary be­cause data do not move in pieces to­day. In­stead, in­for­ma­tion is of­ten trapped in var­i­ous si­los, and when it does move be­tween them, it’s in un­wieldy doc­u­ments.

It’s not like this in many other parts of life. “In the fi­nan­cial world, in the re­tail world, in the so­cial world, data is not held hostage for the ben­e­fit of some­one else,” said Kerry McDer­mott, vice pres­i­dent of pub­lic pol­icy and com­mu­ni­ca­tions at the Cen­ter for Med­i­cal In­ter­op­er­abil­ity. “You’re kind of the dig­i­tal cen­ter of the uni­verse, be­cause if com­pa­nies don’t treat you that way, you’re go­ing to aban­don them, be­cause you have a choice.”

Of­ten, providers and oth­ers won­der why EHRs can’t be more like ATMs. The an­swer, Jaffe said, is that “medicine is more com­pli­cated than an ATM.”

EHRs and stan­dard doc­u­ment for­mats are cer­tainly steps to­ward in­ter­op­er­abil­ity. Though fax ma­chines are still ex­ceed­ingly—and shock­ingly—com­mon in health­care, records are in­creas­ingly stored on servers, not shelves. The gov­ern­ment essen­tially re­quired the use of EHRs with the CMS’ mean­ing­ful use pro­gram, which man­dates, among other tech­no­log­i­cal re­quire­ments, that providers elec­tron­i­cally trans­fer pa­tients’ sum­maries of care for at least half the tran­si­tions of care.

“Mean­ing­ful use and the rules have pushed the mar­ket and health­care sys­tems to do things in a dif­fer­ent way and drive to­ward that cul­ture of shar­ing,” said Lana Mo­ri­arty, di­rec­tor of the Of­fice of Con­sumer eHealth at the Of­fice of the Na­tional Co­or­di­na­tor for Health In­for­ma­tion Tech­nol­ogy.

That will help ease the bur­den on providers, which is cur­rently sig­nif­i­cant: Pri­mary-care providers now spend about equal time—three hours or so—on of­fice vis­its and “desk­top medicine,” ac­cord­ing to a re­cent study in Health Af­fairs.

That pro­por­tion may change now that the ONC is work­ing on im­ple­ment­ing the 21st Cen­tury Cures Act, en­acted last De­cem­ber. No­tably, the act con­tains a pro­hi­bi­tion of “in­for­ma­tion block­ing,” as well as re­quire­ments for EHRs to trans­mit, re­ceive and ac­cept data.

Eric Helsher, Epic Sys­tems Corp.’s vice pres­i­dent of client suc­cess, wor­ries that more reg­u­la­tion might in­crease the al­ready sig­nif­i­cant bur­den on providers—the very thing the ONC and oth­ers are try­ing to avoid. For one, the lan­guage about in­for­ma­tion-block­ing is vague enough that it might lead to “friv­o­lous claims,” he said. As for EHR cer­ti­fi­ca­tions, in the past “well-in­tended re­quire­ments cre­ated un­in­tended con­se­quences that lead to bur­dens on providers.”

He thinks the gov­ern­ment should let the pri­vate sec­tor solve the prob­lem. Epic, Cerner Corp. and other EHR ven­dors say they’re work­ing on it. They’ve formed groups such as Care­qual­ity, from Se­quoia Pro­ject (Epic is a found­ing mem­ber); and the Com­mon­well Health Al­liance (Cerner is a found­ing mem­ber) to pro­mote in­ter­op­er­abil­ity.

“We have a moral obli­ga­tion to fix in­ter­op­er­abil­ity and not com­pete on that piece,” Cerner Pres­i­dent Zane Burke said. “To­day the in­for­ma­tion doesn’t flow very eas­ily, and the obli­ga­tion is on the pa­tient to pro­vide that in­for­ma­tion again and again.” That can lead to mul­ti­ple tests and bills. “If you can’t get some­thing eas­ily, the eas­i­est way to get it when you have the pa­tient in front of you is to re­order it,” North­west­ern’s Mo­ran said.

Care­qual­ity and Com­mon­well re­cently be­gan work­ing to­gether on in­ter­op­er­abil­ity projects, in­clud­ing tack­ling record lo­ca­tion so that pa­tients could be con­nected to their data from dif­fer­ent sources. “We want to get to the point where clin­i­cians just ex­pect to see ev­ery­thing, lo­cal and out­side, and they don’t nec­es­sar­ily have to know the dif­fer­ence any­more,” said Dave Fuhrmann, Epic’s vice pres­i­dent of re­search and de­vel­op­ment.

For that to hap­pen, providers—or their soft­ware— would have to know where to pull records from. Com­mon­well’s record lo­ca­tion tech­nol­ogy—which cre­ates a “vir­tual ta­ble of con­tents” that points to the lo­ca­tions of pa­tient in­for­ma­tion—is one way. An­other method—that some see as the in­ter­op­er­abil­ity so­lu­tion of the fu­ture—is blockchain, a tech­nol­ogy bor­rowed from the fi­nan­cial in­dus­try’s bit­coin.

In health­care, blockchain could in­volve a su­per-se­cure “dis­trib­uted ledger” of ev­ery­where a pa­tient has re­ceived care. Ev­ery time you get med­i­cal care, a record of your re­ceipt of that care would be added to the ledger. The ledger, in turn, would point to places providers need to check to cre­ate a more com­plete med­i­cal record.

The blockchain is mostly an idea at this point; for the tech­nol­ogy to be use­ful, it’s not enough for the blockchain to sim­ply point to where the data are. The data must be able to be trans­mit­ted—they must be in­ter­op­er­a­ble.

When that hap­pens, doc­tors will be able to be bet­ter at their jobs. “If it were all there in front of you,” Tcheng said, “you’d spend a lot less time shuf­fling through pa­per or click­ing on dif­fer­ent tabs,” he said. “You could spend more time ac­tu­ally think­ing about what you’re look­ing at.”

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