,,ii #aagth ,,congress #b;d ,session ,s4 #ciac ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,march #bd1 #bjbb,mr4 ,kaine 7for himself1 ,ms4 ,baldwin1 ,ms4 ,smith1 and ,mr4 ,murphy7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to amend the ,public ,health ,service ,act with respect to public health data accessibility1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,improving ,data ,accessibility ,through ,advancements in ,public ,health ,act or the ,improving ,,data in ,public ,health ,act4 #b4 ,supporting public health data availability and access 7a7 ,designation of public health data standards ,section #bhbc7;a77#b7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #cjj;hh-#cc7;a77#b77 is amended-- 7#a7 by striking ,in carrying out and inserting the following3 7,a7 ,in general ,in carrying out 2 7#b7 by striking shall1 as appropriate and and inserting shall1 not later than #b years after the date of enactment of the ,improving ,,data in ,public ,health ,act12 and 7#c7 by adding at the end the following3 7,b7 ,selection of data and technology standards ,the standards designated as described in subparagraph 7,a7 may include standards to improve-- 7i7 the exchange of electronic health information for-- 7,i7 electronic case reporting2 7,,ii7 syndromic surveillance2 7,,iii7 reporting of vital statistics2 and 7,,iv7 reporting test orders and results electronically1 including from laboratories2 7ii7 automated electronic reporting to relevant public health data systems of the ,centers for ,disease ,control and ,prevention2 and 7iii7 such other use cases as the ,secretary determines appropriate4 7,c7 ,no duplicative efforts 7i7 ,in general ,in carrying out the requirements of this paragraph1 the ,secretary1 in consultation with the ,office of the ,national ,coordinator for ,health ,information ,technology1 may use input gathered 7including input and recommendations gathered from the ,health ,information ,technology ,advisory ,committee71 and materials developed1 prior to the date of enactment of the ,improving ,,data in ,public ,health ,act4 7ii7 ,designation of standards ,consistent with sections #acaaa and #acaab of the ,,hitech ,act1 the data and technology standards designated pursuant to this paragraph shall align with the standards and implementation specifications previously adopted by the ,secretary pursuant to section #cjjd1 as applicable4 7,d7 ,privacy and security ,nothing in this paragraph shall be construed as modifying applicable ,federal or ,state information privacy or security law4 7,e7 ,considerations ,standards designated under this paragraph shall include standards and implementation specifications necessary to ensure the appropriate capture1 exchange1 access1 and use1 of information regarding race1 ethnicity1 sex 7including sexual orientation and gender identity71 disability status1 veteran status1 housing status1 age1 functional status1 and other elements4 4 7b7 ,study on laboratory information standards 7#a7 ,in general ,not later than #a year after the date of enactment of this ,act1 the ,office of the ,national ,coordinator for ,health ,information ,technology shall conduct a study to review the use of standards for electronic ordering and reporting of laboratory test results4 7#b7 ,areas of concentration ,in conducting the study under paragraph 7#a71 the ,office of the ,national ,coordinator for ,health ,information ,technology shall-- 7,a7 determine the extent to which clinical laboratories are using standards for electronic ordering and reporting of laboratory test results2 7,b7 assess trends in laboratory compliance with standards for ordering and reporting laboratory test results and the effect of such trends on the interoperability of laboratory data with public health data systems2 7,c7 identify challenges related to collection and reporting of demographic and other data elements with respect to laboratory test results2 7,d7 identify any challenges associated with using or complying with standards and reporting laboratory test results with data elements identified in standards for electronic ordering and reporting of such results2 and 7,e7 review other relevant areas determined appropriate by the ,office of the ,national ,coordinator for ,health ,information ,technology4 7#c7 ,report ,not later than #b years after the date of enactment of this ,act1 the ,office of the ,national ,coordinator for ,health ,information ,technology shall submit to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives a report concerning the findings of the study conducted under paragraph 7#a74 7c7 ,supporting information sharing through data use agreements 7#a7 ,interagency data use agreements within the ,department of ,health and ,human ,services for public health emergencies 7,a7 ,in general ,the ,secretary of ,health and ,human ,services 7referred to in this subsection as the ,secretary7 shall1 as appropriate1 facilitate the development of1 or updates to1 memoranda of understanding1 data use agreements1 or other applicable interagency agreements regarding appropriate access1 exchange1 and use of public health data between the ,centers for ,disease ,control and ,prevention1 the ,office of the ,assistant ,secretary for ,preparedness and ,response1 other relevant agencies or offices within the ,department of ,health and ,human ,services1 and other relevant ,federal agencies1 in order to prepare for1 identify1 monitor1 and respond to declared or potential public health emergencies4 7,b7 ,requirements ,in carrying out activities pursuant to subparagraph 7,a71 the ,secretary shall-- 7i7 ensure that the agreements and memoranda of understanding described in such subparagraph-- 7,i7 address the methods of granting access to data held by one agency or office with another to support the respective missions of such agencies or offices2 7,,ii7 consider minimum necessary principles of data sharing for appropriate use2 7,,iii7 include appropriate privacy and cybersecurity protections2 and 7,,iv7 are subject to regular updates1 as appropriate2 7ii7 collaborate with the ,centers for ,disease ,control and ,prevention1 the ,office of the ,assistant ,secretary for ,preparedness and ,response1 the ,office of the ,chief ,information ,officer1 and1 as appropriate1 the ,office of the ,national ,coordinator for ,health ,information ,technology1 and other entities within the ,department of ,health and ,human ,services2 and 7iii7 consider the terms and conditions of any existing data use agreements with other public or private entities and any need for updates to such existing agreements1 consistent with paragraph 7#b74 7#b7 ,data use agreements with external entities ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention and the ,assistant ,secretary for ,preparedness and ,response1 may update memoranda of understanding1 data use agreements1 or other applicable agreements and contracts to improve appropriate access1 exchange1 and use of public health data between the ,centers for ,disease ,control and ,prevention and the ,office of the ,assistant ,secretary for ,preparedness and ,response and external entities1 including ,state1 ,tribal1 and territorial health departments1 laboratories1 hospitals and other health care providers1 electronic health records vendors1 and other entities1 as applicable and appropriate1 in order to prepare for1 identify1 monitor1 and respond to declared or potential public health emergencies4 7#c7 ,report ,not later than #ij days after the date of enactment of this ,act1 the ,secretary shall report to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives on the status of the agreements under this subsection4 7d7 ,improving information sharing and availability of public health data ,part ,a of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended by adding at the end the following3 #caj;,b4 ,improving information sharing and availability of public health data 7a7 ,in general ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 may require the reporting of public health and health care data and information to the ,centers for ,disease ,control and ,prevention by-- 7#a7 health care providers and facilities1 including pharmacies2 7#b7 public health1 clinical1 and other laboratories and diagnostic testing entities2 7#c7 ,state1 local1 and ,tribal health departments2 7#d7 health information exchanges and health information networks2 and 7#e7 other entities1 as determined by the ,secretary4 7b7 ,content1 form1 and manner ,the ,secretary shall prescribe the content1 form1 manner1 and frequency of the reporting of public health and health care data and information required by subsection 7a71 including necessary demographic data or other data elements that the ,secretary determines is necessary for public health surveillance under this section4 ,the ,secretary may collaborate with representatives of ,state1 local1 and ,tribal health departments and other entities1 in developing the content1 form1 manner1 and frequency requirement under this subsection4 ,such requirements shall align with the standards and implementation specifications adopted by the ,secretary under section #cjjd1 as applicable4 7c7 ,decreased burden ,the ,secretary shall make reasonable efforts to limit public health and health care data and information reported under this section to the minimum necessary information needed to accomplish the intended public health purpose4 7d7 ,access by relevant public health authorities ,the ,secretary shall collaborate with representatives of ,state1 local1 and ,tribal health departments1 and entities representing such departments to ensure data collected under this section is accessible1 as appropriate1 to ,state1 local1 or ,tribal health authorities4 ,nothing in this section shall be construed to limit the authority to share public health surveillance data with ,state1 local1 or ,tribal health authorities4 7e7 ,exemption of certain public health data from disclosure ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 may exempt from disclosure under section #eeb7;b77#c7 of title #e1 ,united ,states ,code1 public health data that are collected by the ,centers for ,disease ,control and ,prevention1 if-- 7#a7 an individual is identified through such data2 or 7#b7 there is at least a very small risk1 as determined by current scientific practices or statistical methods1 that some combination of the information1 the request1 and other available data sources or the application of technology could be used to deduce the identity of an individual4 4 7e7 ,improving public health data collection 7#a7 ,in general ,the ,secretary of ,health and ,human ,services 7referred to in this subsection as the ,secretary7 shall award grants1 contracts1 or cooperative agreements to eligible entities for purposes of identifying1 developing1 or disseminating best practices in the collection of electronic health information and the use of designated data standards and implementation specifications to improve the quality and completeness of data1 including demographic data1 collected1 accessed1 or used for public health purposes and to address health disparities and related health outcomes4 7#b7 ,eligible entities ,to be eligible to receive an award under this subsection an entity shall-- 7,a7 be a health care provider1 academic medical center1 community-based organization1 ,state1 local governmental entity1 ,indian ,tribe or ,tribal organization 7as such terms are defined in section #d of the ,indian ,self ,determination and ,education ,assistance ,act 7#be ,u4,s4,c4 #ecjd771 urban ,indian organization 7as defined in section #d of the ,indian ,health ,care ,improvement ,act 7#be ,u4,s4,c4 #afjc771 or other appropriate public or private nonprofit entity1 or a consortia of any such entities2 and 7,b7 submit an application to the ,secretary at such time1 in such manner1 and containing such information as the ,secretary may require4 7#c7 ,activities ,entities receiving awards under this subsection shall use such award to develop and test best practices for training health care providers to use standards and implementation specifications that assist in the capture1 access1 exchange1 and use of electronic health information1 including demographic information1 disability status1 veteran status1 housing status1 functional status1 and other data elements4 ,such activities shall include1 at a minimum-- 7,a7 improving1 understanding1 and using data standards and implementation specifications2 7,b7 developing or identifying methods to improve communication with patients in a culturally and linguistically appropriate manner1 including to better capture information related to demographics of such individuals2 7,c7 developing methods for accurately categorizing and recording patient responses using available data standards2 7,d7 educating providers regarding the utility of such information for public health purposes and the importance of accurate collection and recording of such data2 and 7,e7 other activities1 as the ,secretary determines appropriate4 7#d7 ,reporting 7,a7 ,reporting by award recipients ,each recipient of an award under this subsection shall submit to the ,secretary a report on the results of best practices identified1 developed1 or disseminated through such award4 7,b7 ,report to congress ,not later than #a year after the completion of the program under this subsection1 the ,secretary shall submit a report to ,congress on the success of best practices developed under such program1 opportunities for further dissemination of such best practices1 and recommendations for improving the capture1 access1 exchange1 and use of information to improve public health and reduce health disparities4 7#e7 ,non-duplication of efforts ,the ,secretary shall ensure that the activities and programs carried out under this subsection are free of unnecessary duplication of effort4 7#f7 ,authorization of appropriations ,there are authorized to be appropriated #aj1jjj1jjj for each of fiscal years #bjbc through #bjbe to carry out this subsection4 7f7 ,information collection ,section #cai;,d7a7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bdg;d-#d7;a77 is amended by adding the following new paragraph3 7#e7 ,information collection ,subchapter ,i of chapter #ce of title #dd1 ,united ,states ,code1 shall not apply to information collection by the ,centers for ,disease ,control and ,prevention1 including the ,agency for ,toxic ,substances and ,disease ,registry1 that are part of investigations1 research1 surveillance1 or evaluations undertaken for public health purposes4 4