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Pa­tients should have eas­ier ac­cess to their doc­tors’ med­i­cal notes

Modern Healthcare - - OPINIONS COMMENTARY -

HHS Sec­re­tary Kath­leen Se­be­lius has taken an im­por­tant step in launch­ing the first national ef­fort to give con­sumers elec­tronic ac­cess to their lab­o­ra­tory re­sults. We cer­tainly agree with the sec­re­tary that “When it comes to health, in­for­ma­tion is power.”

But at a time when all Amer­i­cans are in­creas­ingly re­ly­ing on elec­tronic tech­nolo­gies to ac­cess in­for­ma­tion they need to make im­por­tant de­ci­sions, we urge the govern­ment, other pay­ers, clin­i­cians and con­sumers to move even fur­ther for­ward. If con­sumers are to be­come truly ac­tive part­ners in their own health­care, they should be able to re­trieve their per­sonal med­i­cal in­for­ma­tion read­ily, in­clud­ing their doc­tors’ notes. As doc­tors and hos­pi­tals in­creas­ingly use in­for­ma­tion tech­nolo­gies to em­brace trans­parency and in­for­ma­tion-shar­ing, let’s move to­ward “open notes” and adopt them proac­tively and ea­gerly, rather than with mum­bling and grum­bling.

While pa­tients are al­lowed to re­quest and re­view their med­i­cal notes un­der the 1996 Health In­sur­ance Porta­bil­ity and Ac­count­abil­ity Act, few take ad­van­tage of that op­tion, and few doc­tors in­vite pa­tients to do so as a mat­ter of rou­tine. When pa­tients re­quest such re­view, it’s of­ten an ar­du­ous and at times ex­pen­sive task. Ac­cord­ing to a 2011 sur­vey by the Markle Foun­da­tion, only 6% of pa­tients ever ask for copies of their per­sonal health in­for­ma­tion or med­i­cal records in an elec­tronic for­mat. In many re­spects, health pro­fes­sion­als have erected an in­vis­i­ble but sub­stan­tial wall be­tween what they know and write and what the pa­tient may see. And this pat­tern per­sists at a time when “shared de­ci­sion­mak­ing” gains more and more at­ten­tion.

As a pri­mary-care doc­tor with 40 years of ex­pe­ri­ence with pa­tients, teach­ing and study­ing health ser­vices, and as a nurse who pro­motes the use of in­for­ma­tion tech­nol­ogy to im­prove care, we un­der­stand that en­gag­ing pa­tients ac­tively in pro­mot­ing health and man­ag­ing ill­ness is a long-stand­ing but elu­sive goal of health­care. We also be­lieve that giv­ing pa­tients ac­cess to their own med­i­cal notes may help them man­age their care more ef­fec­tively and join in ef­forts to de­tect and pre­vent med­i­cal er­rors.

Through Open­notes, a project funded by the Robert Wood John­son Foun­da­tion, we are test­ing the im­pact of this idea with more than 100 pri­mary-care doc­tors and 21,000 pa­tients tell us that some of their pa­tients ap­pear far more en­gaged and are ex­cited by what they view as im­proved and more open lines of com­mu­ni­ca­tion.

The ram­i­fi­ca­tions of invit­ing pa­tients to read their med­i­cal notes are com­plex. Will doc­tors be more likely to com­plete en­counter notes in a timely fash­ion and en­sure that they are ac­cu­rate? Will open notes im­prove pa­tient ad­her­ence to med­i­cal reg­i­mens? Pa­tients of­ten re­mem­ber lit­tle of what hap­pens in the doc­tor’s of­fice or leave over­whelmed by what they have been told; will they down­load the record and di­gest its con­tents?

How will doc­tors and pa­tients ad­dress is­sues such as sub­stance abuse, men­tal health, obe­sity and can­cer once records be­come an open book? Will pa­tients share their doc­tors’ notes with oth­ers? The doc­tor-pa­tient re­la­tion­ship is confidential, but with open notes, it’s up to the pa­tient whether it will be pri­vate. Will down­loaded or for­warded notes spawn a raft of sec­ond opin­ions, in­volve fam­i­lies and other in­for­mal care­givers more ac­tively in sup­port­ive care, or af­fect the like­li­hood of med­i­cal er­ror and lit­i­ga­tion?

Our ex­pec­ta­tion is that the short- and longterm ben­e­fits of open notes will far out­weigh the harms.

But whether one fa­vors or op­poses this idea, pa­tients, pol­i­cy­mak­ers and clin­i­cians who think about the next gen­er­a­tions of pa­tients and care­givers agree that such evo­lu­tion in care is al­most cer­tainly in­evitable. Trans­parency is here to stay, and we in the med­i­cal pro­fes­sions can choose ei­ther to shape the fu­ture or try to stem its evo­lu­tion. If we work care­fully to­ward open notes with those we serve, we sus­pect we’ll come up with a “win-win” for all con­cerned.

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