Statements on Introduced Bills and Joint Resolutions - S. 2594 - Part 1

Date: June 24, 2004
Location: Washington, DC


STATEMENTS ON INTRODUCED BILLS AND JOINT RESOLUTIONS

By Mr. LIEBERMAN:

S. 2594. A bill to reduce health care disparities and improve health care quality, to improve the collection of racial, ethnic, primary language, and socio-economic determination data for use by healthcare researchers and policymakers, to provide performance incentives for high performing hospitals and community health centers, and to expand current Federal programs seeking to eliminate health disparities; to the Committee on Finance.

Mr. LIEBERMAN. Mr. President, our Nation wrestles with a medical mystery that affects the health and very lives of millions of Americans every year: Why do patients with similar ailments have such disparate outcomes?
Albert Einstein once said: "I cannot believe that God plays dice with the world." I would never quibble with Einstein. And besides, I strongly believe that myself.

I also believe we should aspire to that ideal in the earthly institutions we create, like our health care system. Medical outcomes should not be a matter of luck. Treatment should be as predictable and equal as possible within the bounds of science and human fallibility.

But that is not the system we have today. Study after study shows that we have created a health care casino where the quality of care seems to have as much to do with the luck of the dice as anything else.

In America, good medical care for all should be a given-not a gamble.

That is why today I am introducing legislation I call FairCare. FairCare will give us the tools we need to begin eliminating these across-the-board problems of medical disparities among patients with identical ailments.

In the broadest sense, we know we have two problems-quality of care and disparity of care. While these problems are distinct and separate-solving either will help solve both.

Let me dramatize the kind of odds we are talking about when a patient enters the healthcare system. I would ask my colleagues to imagine for a moment that they are in a casino, rolling dice and need a five or a nine to win. The odds of you winning with either of those numbers is about 60 percent. Of course, that means you have a 40 percent chance of losing.

Now, if you enjoy gambling-and are not betting a lot of money-maybe that's fun. But would you bet your house on those odds?
Or your children's college fund? Or your health-or your life?

Well, the odds in our imaginary dice game are the precise odds we send people into the health care system every day.
A recent study reported in the New England Journal of Medicine said that about 40 percent of patients reported medical errors in the care of either themselves or a loved one. The cost of these mistakes is staggering. Between 44,000 and 100,000 people die each year because of those medical mistakes.

To put those shocking numbers in perspective, imagine if you will that our nation experienced a day like September the 11th, at least twice a month, every month-for a year.

Overall, the cost of not getting it right the first time represents a yearly loss to the national economy of $17 to $29 billion. This is due largely to the medical complications that must be treated down the line because of the initial medical errors, as well as lost wages and productivity.

Now, while most Americans have problems finding high-quality health care at a reasonable cost, racial and ethnic minorities fare the worst.

Medical studies also show that:

When actors portrayed patients with identical complaints of chest pain, women and African Americans were 40 percent less likely to have their complaints taken seriously and be referred for further diagnostic tests.

Hispanics with asthma are almost twice as likely as white patients to face largely-avoidable emergency rooms visits or have the illness limit their daily activities.

Infants born to American Indians and Alaskan Natives are twenty-five percent more likely than the national average to die in the first year of life.

Asian American women are 20 percent less likely to get life-saving screening exams for cervical cancer than white women.
And many of these disparities persist, even when factors like income and access to health care are taken into account. Why is this? The answer is: We don't exactly know. But it is clear that we do not have a color blind healthcare system. And unequal
treatment is Un-American. We cannot tolerate it. Rather, we must understand it, confront it, and fix it.

Besides, solving this medical mystery for the most severely affected minority groups will improve healthcare for everyone else as well. In other words, if we can dramatically increase the quality of medical care, unfair disparities will decline and all will benefit.

The clues to solving the problems of both medical quality and healthcare disparities are there. We just have to go find them.
That will require gathering crucial information that will help us clearly identify the problems. Then we can help finance the solutions that will cure them.

That's why we need FairCare.

To begin, we need data-we need to see where we have quality problems and where we have disparities in care. FairCare will
bring the medical and patient communities together to help us better measure healthcare quality in a scientific way that will give us our first comprehensive glimpse of where the problems lie.

Once glimpsed, FairCare can begin to fund improvement efforts developed by local hospitals and community health centers that fit the needs of their local neighborhoods. FairCare will use the reach and resources of Medicare to reward hospitals that improve quality and reduce disparities.

In recent testimony before the House Ways and Means Subcommittee on Health Care, Glenn Hackbarth, Chairman of Medicare Payment Advisory Commission, said he agreed with this approach. "It is time for Medicare to take the next step in quality improvement and put financial incentives for quality directly into its payment systems," he said.

Under FairCare, community health centers not part of the Medicare system will be eligible for grants and bonuses. In other words, FairCare is a carrots program, not a sticks program-it rewards hospitals and health centers that perform-that make progress in implementing quality healthcare and reducing healthcare disparities.

We will also provide tax relief to help FairCare providers cover the cost of their malpractice insurance.

Taken together, FairCare will give our most overburdened and financially strapped healthcare providers-that act to deliver quality medicine-the help they need to give their communities the help they need. And when they succeed, we will all win.
When they succeed, good medical care for all will be a given-not a gamble.

Just as God does not play dice with the world, we will no longer play dice with the lives of our most vulnerable-the sick and the
ailing.

Mr. President, I ask unanimous consent that the text of the bill and statements of support be printed in the RECORD.

There being no objection, the material was ordered to be printed in the RECORD, as follows:

S. 2594

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

(a) SHORT TITLE.-This Act may be cited as the "Faircare Act".

(b) TABLE OF CONTENTS.-The table of contents of this Act is as follows:

Sec. 1. Short title; table of contents.

Sec. 2. Findings.

Sec. 3. Definitions.

TITLE I-DEMOGRAPHIC DATA COLLECTION

Sec. 101. Data on race, ethnicity, highest education level attained, and primary language.

Sec. 102. Revision of HIPAA claims standards.

TITLE II-IMPROVED COLLECTION OF QUALITY DATA

Sec. 201. Authority of Agency for Healthcare Research and Quality.

"Part C-Improved Collection of Quality Data

"Sec. 921. General authority of the Agency to determine measures.

"Sec. 922. Use of hospital-specific measures.

"Sec. 923. Outpatient-specific measures.

"Sec. 924. Ranking of measures.

"Sec. 925. Advisory Committee on Quality.

"Sec. 926. Updates of conditions.

"Sec. 927. Reporting of measures.

"Sec. 928. Voluntary submission of data.

"Sec. 929. Authorization of appropriations.

Sec. 202. Office of national healthcare disparities and quality.

TITLE III-FAIRCARE HOSPITAL PROGRAM

Sec. 301. Faircare hospital program.

Sec. 302. Technical assistance grants.

TITLE IV-COMMUNITY HEALTH CENTERS.
Sec. 401. Authority of Bureau of Primary Health Care to develop new reporting standards.

Sec. 402. Faircare designation for health centers.

Sec. 403. Grants for technical assistance.

Sec. 404. Health disparity collaboratives.

TITLE V-REACH 2010

Sec. 501. Expansion of REACH 2010

TITLE VI-MALPRACTICE INSURANCE RELIEF

Sec. 601. Refundable tax credit for the cost of malpractice insurance for certain providers.

Sec. 602. Grants to non-profit hospitals.

Sec. 603. Grants for research into quality of care and medical errors.

Sec. 604. Authorization of appropriations.

SEC. 2. FINDINGS.

(a) EVIDENCE OF HEALTHCARE DISPARITIES.-With respect to evidence of healthcare disparities, Congress makes the following findings:

(1) Healthcare disparities affect the lives, health, and livelihood of Americans, and increase the overall cost of health care in the United States.

(2) Minority patients with chronic diseases have been found less likely to receive the necessary services required to manage effectively these illnesses, such as routine blood pressure checks or eye examinations, and are less likely to receive treatments to cure these conditions, such as heart surgeries or kidney transplants.

(3) Studies have shown that non-English speaking patients report more satisfaction with health encounters and have better health outcomes after encounters with healthcare providers who speak their primary language.

(4) The Institute of Medicine's report "In the Nation's Compelling Interest", concluded that racial and ethnic minority healthcare providers are significantly more likely than their white peers to serve minority and medically underserved communities, thereby helping to improve problems of limited minority access to care.

(5) Data from the National Center for Health Statistics demonstrates that minorities are less likely to receive routine cancer screenings even when they do have health insurance and access to healthcare providers, and once diagnosed with cancer, elderly minority patients are also less likely to receive appropriate treatment for pain associated with cancer.

(b) EVIDENCE OF INCONSISTENCIES IN HEALTHCARE QUALITY.-With respect to evidence of inconsistencies in healthcare quality, Congress makes the following findings:

(1) Inconsistent healthcare quality threatens the health of all Americans regardless of race, ethnicity, or socio-economic status.

(2) Studies by the RAND Corporation have shown that all patients in the United States have only a 55 percent possibility of receiving clinically appropriate care in the healthcare setting, despite the fact that the United States spends twice as much as other industrialized countries on health care.

(3) The control of hypertension is essential to reducing mortality from heart disease, stroke, and diabetes complications, yet, only 23 percent of Americans with hypertension are adequately treated.

(4) About 1 in 5 elderly Americans are prescribed inappropriate medications.

(5) Only 21 percent of Americans with diabetes get all recommended checkups.

(6) One of the safest, simplest, and most cost-effective ways to reduce cancer morbidity and mortality is to increase screening rates for selected cancers including colorectal cancers, yet, less than half of men and women over the age of 50 report screening for colorectal cancers.

(7) In the United States, over ¼ of infants and toddlers of all races and ethnicities do not receive all recommended vaccines.

(8) Breakthroughs in treatments have enabled more patients to survive and live better, yet too many of these treatments are not being administered to all those who can benefit from them.

SEC. 3. DEFINITIONS.

In this Act:

(1) HEALTH DISPARITY POPULATIONS.-The term "health disparity populations" has the meaning given that
term in section 485E(d) of the Public Health Service Act (42 U.S.C. 287c-31(d)).

(2) RACIAL AND ETHNIC MINORITY.-The term "racial and ethnic minority" has the meaning given the term "racial and ethnic minority group" in section 1707(g)(1) of the Public Health Service Act (42 U.S.C. 300u-6(g)(1)).

TITLE I-DEMOGRAPHIC DATA COLLECTION

SEC. 101. DATA ON RACE, ETHNICITY, HIGHEST EDUCATION LEVEL ATTAINED, AND PRIMARY LANGUAGE.

(a) PURPOSE.-It is the purpose of this section to promote data collection and reporting by race, ethnicity, highest education level attained, and primary language among federally supported health programs.

(b) AMENDMENT.-Part B of title II of the Public Health Service Act (42 U.S.C. 238 et seq.) is amended by adding at the end the following:

"SEC. 249. DATA ON RACE, ETHNICITY, HIGHEST EDUCATION LEVEL ATTAINED, AND PRIMARY LANGUAGE.

"(a) REQUIREMENTS.-

"(1) IN GENERAL.-Each health-related program operated by or that receives funding or reimbursement, in whole or in part, either directly or indirectly from the Department of Health and Human Services shall, in accordance with the schedule described in subsection (e)-

"(A) require the collection, by the agency or program involved, of data on the race, ethnicity, highest education level attained, and primary language of each applicant for and recipient of health-related assistance under such program-

"(i) using, at a minimum, the categories for race and ethnicity described in the 1997 Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity;

"(ii) using the standards developed under subsection (d) for the collection of language data;

"(iii) where practicable, collecting data for additional population groups if such groups can be aggregated into the minimum race and ethnicity categories as defined by the Office of Management and Budget; and

"(iv) where practicable, through self-reporting;

"(B) with respect to the collection of the data described in subparagraph (A) for applicants and recipients who are minors or otherwise legally incapacitated, require that-

"(i) such data be collected from the parent or legal guardian of such an applicant or recipient; and

"(ii) the preferred language of the parent or legal guardian of such an applicant or recipient be collected; and

"© ensure that the provision of assistance to an applicant or recipient of assistance is not denied or otherwise adversely affected because of the failure of the applicant or recipient to provide race, ethnicity, highest education level attained, and primary language data.

"(2) RULE OF CONSTRUCTION.-Nothing in this subsection shall be construed to permit the use of information collected under this subsection in a manner that would adversely affect any individual providing any such information.

"(b) PROTECTION OF DATA.-The Secretary shall ensure (through the promulgation of regulations or otherwise) that all data collected pursuant to subsection (a) is protected-

"(1) under the same privacy protections as the Secretary applies to other health data under the regulations promulgated under section 264© of the Health Insurance Portability and Accountability Act of 1996 (Public Law 104-191; 110 Stat. 2033) relating to the privacy of individually identifiable health information and other protections; and

"(2) from all inappropriate internal use by any entity that collects, stores, or receives the data, including use of such data in determinations of eligibility (or continued eligibility) in health plans, and from other inappropriate uses, as defined by the Secretary.

"© COMPLIANCE WITH STANDARDS.-Data collected under subsection (a) shall be obtained, maintained, and presented (including for reporting purposes) in accordance with, at a minimum, the 1997 Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity.

"(d) LANGUAGE COLLECTION STANDARDS.-Not later than 1 year after the date of enactment of this section, the Director of the Office of Minority Health, in consultation with the Office for Civil Rights of the Department of Health and Human Services, shall develop and disseminate Standards for the Classification of Federal Data on Preferred Written and Spoken Language.

"(e) SCHEDULE OF COMPLIANCE.-Data collection under subsection (a) shall be required within the following time periods:

"(1) With respect to medicare-related data (under title XVIII of the Social Security Act), such data shall be collected not later than 2 years after the date of enactment of this section, including data related to-

"(A) the Medicare Hospital Quality Initiative;

"(B) the Center for Medicare and Medicaid Services Abstraction or Reporting Tools (referred to in this section as 'CART');

"© all CART equivalent private databases used to submit data for the Medicare Hospital Quality Initiative or medicare billing (including data for both medicare and non-medicare patients); and

"(D) all medicare billing communications.

"(2) With respect to data that is not currently mandated or collected and reported by the medicaid and State Children's Health Insurance Program (under titles XIX and XXI of the Social Security Act), such data shall be collected not later than 4 years after the date of enactment of this section.

"(3) With respect to data relating to biomedical and health services research that is described in subsection (a), such data shall be collected not later than 6 years after the date of enactment of this section.

"(4) With respect to data relating to all other programs described in subsection (a), such data shall be collected not later than 6 years after the date of enactment of this section.

"(f) TECHNICAL ASSISTANCE FOR THE COLLECTION AND REPORTING OF DATA.-

"(1) IN GENERAL.-The Secretary may, either directly or through grant or contract, provide technical assistance to enable a healthcare program or an entity operating under such program to comply with the requirements of this section.

"(2) TYPES OF ASSISTANCE.-Assistance provided under this subsection may include assistance to-

"(A) enhance or upgrade information technology that will facilitate race, ethnicity, highest education level attained, and primary language data collection and analysis;

"(B) improve methods for health data collection and analysis including additional population groups beyond the Office of Management and Budget categories if such groups can be aggregated into the minimum race and ethnicity categories;

"© develop mechanisms for submitting collected data subject to existing privacy and confidentiality regulations; and

"(D) develop educational programs to inform health insurance issuers, health plans, health providers, health-related agencies, and the general public that data collection and reporting by race, ethnicity, and preferred language are legal and essential for eliminating health and healthcare disparities.

"(g) GRANTS FOR DATA COLLECTION BY COMMUNITY HEALTH CENTERS AND HOSPITALS.-

"(1) IN GENERAL.-The Secretary, in consultation with the Administrator of the Centers for Medicare & Medicaid Services and the Administrator of the Health Resources and Services Administration, is authorized to award grants for the conduct of 100 demonstration programs, 50 percent of which shall be conducted by community health centers and 50 percent of which shall be conducted by hospitals, to enhance the ability of such centers and hospitals to collect, analyze, and report the data required under subsection (a).

"(2) ELIGIBILITY.-To be eligible to receive a grant under paragraph (1), a community health center or hospital shall-

"(A) prepare and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require; and

"(B) provide assurances that the community health center or hospital will use, at a minimum, the racial and ethnic categories and the standards for collection described in the 1997 Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity and available standards for language.

"(3) ACTIVITIES.-A grantee shall use amounts received under a grant under paragraph (1) to-

"(A) collect, analyze, and report data by race, ethnicity, highest education level attained, and primary language for patients served by the hospital (including emergency room patients and patients served on an outpatient basis) or community health center;

"(B) enhance or upgrade computer technology that will facilitate racial, ethnic, highest education level attained, and primary language data collection and analysis;

"© provide analyses of disparities in health and healthcare, including specific disease conditions, diagnostic and therapeutic procedures, or outcomes;

"(D) improve health data collection and analysis for additional population groups beyond the Office of Management and Budget categories if such groups can be aggregated into the minimum race and ethnicity categories;

"(E) develop mechanisms for sharing collected data subject to privacy and confidentiality regulations;

"(F) develop educational programs to inform health insurance issuers, health plans, health providers, health-related agencies, patients, enrollees, and the general public that data collection, analysis, and reporting by race, ethnicity, and preferred language are legal and essential for eliminating disparities in health and healthcare; and

"(G) develop quality assurance systems designed to track disparities and quality improvement systems designed to eliminate disparities.

"(4) COMMUNITY HEALTH CENTER; HOSPITAL.-In this subsection:

"(A) COMMUNITY HEALTH CENTER.-The term 'community health center' means a Federally qualified health center as defined in section 1861(aa)(4) of the Social Security Act.

"(B) HOSPITAL.-The term 'hospital' means a hospital participating in the prospective payment system under section 1886 of the Social Security Act and that is submitting quality indicators data in accordance with section 1886(b)(3)(B)(vii)(II) of the Social Security Act.

"(h) DEFINITION.-In this section, the term 'health-related program' means a program-

"(1) under the Social Security Act (42 U.S.C. 301 et seq.) that pays for healthcare and services; and

"(2) under this Act that provides Federal financial assistance for healthcare, biomedical research, health services research, and other programs designated by the Secretary.

"(i) AUTHORIZATION OF APPROPRIATIONS.-There is authorized to be appropriated to carry out this section, $50,000,000 for fiscal year 2005, and such sums as may be necessary for each of fiscal years 2006 through 2015.".

SEC. 102. REVISION OF HIPAA CLAIMS STANDARDS.

(a) IN GENERAL.-Not later than 1 year after the date of enactment of this Act, the Secretary of Health and Human Services shall revise the regulations promulgated under part C of title XI of the Social Security Act (42 U.S.C. 1320d et seq.), as added by the Health Insurance Portability and Accountability Act of 1996 (Public Law 104-191), relating to the collection of data on race, ethnicity, highest education level attained, and primary language in a health-related transaction to require-

(1) the use, at a minimum, of the categories for race and ethnicity described in the 1997 Office of Management and Budget Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity;

(2) the establishment of new data code sets for highest education level attained and primary language; and

(3) the designation of the racial, ethnic, highest education level attained, and primary language code sets as "required" for claims and enrollment data.

(b) DISSEMINATION.-The Secretary of Health and Human Services shall disseminate the new standards developed under subsection (a) to all health entities that are subject to the regulations described in such subsection and provide technical assistance with respect to the collection of the data involved.

© COMPLIANCE.-Not later than 1 year after the final promulgation of the regulations developed under subsection (a), the Secretary of Health and Human Services shall require that health entities comply with such standards.

(d) AUTHORIZATION OF APPROPRIATIONS.-There is authorized to be appropriated to carry out this section, such sums as may be necessary for each of fiscal years 2005 through 2015.

TITLE II-IMPROVED COLLECTION OF QUALITY DATA

SEC. 201. AUTHORITY OF AGENCY FOR HEALTHCARE RESEARCH AND QUALITY.

Title IX of the Public Health Service Act (42 U.S.C. 299 et seq.) is amended-

(1) by redesignating part C as part D;

(2) by redesignating sections 921 through 928, as sections 931 through 938, respectively;

(3) in section 938(1) (as so redesignated), by striking "921" and inserting "931"; and

(4) by inserting after part B the following:

"PART C-IMPROVED COLLECTION OF QUALITY DATA

"SEC. 921. GENERAL AUTHORITY OF THE AGENCY TO DETERMINE MEASURES.

"(a) IN GENERAL.-The Agency, in consultation with the Centers for Medicare & Medicaid Services, the Health Resources and Services Administration, the Office for Civil Rights of the Department of Health and Human Services, and the Office of Minority Health, shall have the authority to develop a new set of quality measures for each of the most common treatment settings. Such settings shall include, but not be limited to, hospitals, outpatient facilities, community health centers, long term care facilities, and other independent health care facilities.

"(b) REQUIREMENTS.-The quality measures developed under subsection (a) shall-

"(1) as closely as possible reflect the healthcare priority areas determined by the Institute of Medicine, the National Quality Forum, the Quality Initiative, and other healthcare quality and health care disparity organizations as determined by the Secretary;

"(2) reflect the Institute of Medicine's goal of inclusiveness, improvability, and impact, addressing pervasive health and healthcare problems that produce a high level of morbidity and mortality, that disproportionally affect health disparity populations, and that have the potential for improvement with the consistent application of proven medical interventions; and
"(3) where practical, employ process measures of care.

"SEC. 922. USE OF HOSPITAL-SPECIFIC MEASURES.

"(a) DEVELOPMENT.-

"(1) IN GENERAL.-The Agency, in conjunction with the Centers for Medicare & Medicaid Services, shall develop a set of hospital quality measures.

"(2) USE.-The Secretary shall ensure that the Hospital Quality Initiative and the Robust Project Measures of the Centers for Medicare & Medicaid Services, and other Centers for Medicare & Medicaid Services directed quality initiatives use the hospital quality measures developed under paragraph (1).

"(b) SUBMISSION.-The information required under the measures developed under subsection (a) shall be submitted in accordance with section 1886(b)(3)(B)(vii) except that any reference to '2007' shall be deemed to be a reference to '2015'.

"SEC. 923. OUTPATIENT-SPECIFIC MEASURES.

"(a) IN GENERAL.-The Agency, in conjunction with the Bureau of Primary Health Care within the Health Resources and Services Administration, shall develop a set of outpatient quality measures. Such measures may be used as a supplement to existing demographic or quality reporting instruments or other quality reporting instruments utilized by the Health Resources and Services Administration.

"(b) VOLUNTARY SUBMISSION.-Submission of the supplementary information required under the measures developed under subsection (a) shall be voluntary.

"© DISCRETIONARY USE.-The measures developed under subsection (a) may be used as appropriate by the Hospital Quality Initiative and the Robust Project Measures and other Centers for Medicare & Medicaid Services-directed quality initiatives.

"SEC. 924. RANKING OF MEASURES.

"The Agency shall-

"(1) determine which of the quality measures developed under this part have the greatest potential to remedy healthcare disparities;

"(2) rank such quality measures according to such potential; and

"(3) rank such quality measures separately as applicable to hospitals and outpatients.

"SEC. 925. ADVISORY COMMITTEE ON QUALITY.

"(a) IN GENERAL.-The Agency shall establish an Advisory Committee on Quality (referred to in this section as the 'Advisory Committee') to recommend quality indicators for all quality data sets developed under this section. The Agency may designate a governmental or nongovernmental committee existing on the date of enactment of this part to serve as the Advisory Committee so long as the membership requirements of subsection (b) are complied with.

"(b) MEMBERSHIP.-The Advisory Committee shall be composed of not less than 10 members, including-

"(1) the Director;

"(2) the Administrator of the Centers for Medicare & Medicaid Services;

"(3) the Director of the Centers for Disease Control and Prevention;

"(4) the Administrator of the Health Resources and Services Administration;

"(5) the Director of the Office of Minority Health of the Department of Health and Human Services;

"(6) the Director of the Office for Civil Rights of the Department of Health and Human Services;

"(7) the Director of the Indian Health Service;

"(8) the chairperson of the Institute of Medicine National Roundtable on Healthcare Quality or other representatives of the Institute of Medicine;

"(9) the chairperson of the National Quality Forum;

"(10) the Director of the Joint Commission on Accreditation of Healthcare Organizations;

"(11) a representative of the Quality Initiative; and

"(12) other members to be appointed by the Secretary to represent other private, public, and non-profit stakeholders from medicine, healthcare, patient groups, and academia, who shall serve for a term of 3 years, and shall include a mix of different professions and broad geographic and culturally diverse representation

"© DUTIES.-The Advisory Committee shall-

"(1) for each 3 year period beginning with fiscal year 2005, report to the Agency recommendations of quality indicators for all quality data sets described in this part;

"(2) in making the recommendations described in paragraph (1), focus on how best to integrate the findings of the Institute of Medicine, the National Quality Forum, the Quality Initiative, and other healthcare quality and healthcare disparity organizations as determined by the Secretary into quality measures that can be used in carrying out sections 922 and 923; and
"(3) address issues of continuity of care between ambulatory care and inpatient settings to the maximum extent practicable.

"SEC. 926. UPDATES OF CONDITIONS.

"(a) IN GENERAL.-At least once during every 3-year period beginning in fiscal year 2006, the Secretary shall direct the Agency to update the list of measures as described in sections 922 and 923. Such updates shall be based on recommendations of the Advisory Committee established under section 925 and determined in consultation with the Centers for Medicare & Medicaid Services and the Health Resources and Services Administration.

"(b) REQUIREMENT.-For each period in which an update is undertaken under subsection (a), the Agency shall ensure that the recommendations referred to such subsection include measures for at least 4 additional conditions identified by the Institute of Medicine National Roundtable on Healthcare Quality, or measures developed by other healthcare disparity or healthcare quality organizations as determined by the Secretary, and not addressed by the quality reporting initiatives administered by the Secretary on the date of enactment of this part. The requirement of this section shall apply until there are measures for all Institute of Medicine priority areas.

"SEC. 927. REPORTING OF MEASURES.

"(a) IN GENERAL.-Not later than 5 years after the date of enactment of the Faircare Act, the Secretary shall enter into a contract with the Institute of Medicine to produce a report on the effectiveness of the quality measures developed by the Agency under this part in accurately assessing the quality of healthcare and healthcare disparities present in hospitals, community health centers, and other appropriate health care settings. Such report shall evaluate the progress made in improving the quality and consistency of healthcare and reducing healthcare disparities.

"(b) MANNER OF REPORTING.-All data reported under the Faircare Act (including data reported under this part) shall, to the maximum extent practicable, be reported by race, ethnicity, primary language, and highest educational level attained in accordance with section 249.

"SEC. 928. EFFECTIVENESS RESEARCH GRANTS.

"The Office of Minority Health shall have the authority to award grants to study the effectiveness of all measures and programs established under this part. The Office shall recommend ways to improve such measure and programs and to implement the
findings of the study conducted under section 927.

"SEC. 929. PROTECTION OF DATA.

"(a) RULE OF CONSTRUCTION.-Nothing in this part shall be construed to permit the use of information collected under this part in a manner that would adversely affect any individual providing any such information.

"(b) PROTECTION OF DATA.-The Secretary shall ensure (through the promulgation of regulations or otherwise) that all data collected pursuant to this part is protected-

"(1) under the same privacy protections as the Secretary applies to other health data under the regulations promulgated under section 264© of the Health Insurance Portability and Accountability Act of 1996 (Public Law 104-191; 110 Stat. 2033) relating to the privacy of individually identifiable health information and other protections; and

"(2) from all inappropriate internal use by any entity that collects, stores, or receives the data, including use of such data in determinations of eligibility (or continued eligibility) in health plans, and from other inappropriate uses, as defined by the Secretary.

"SEC. 929A. AUTHORIZATION OF APPROPRIATIONS.

"There is authorized to be appropriated to carry out this section, $5,000,000 for each of fiscal years 2005 through 2007, and such sums as may be necessary for each of fiscal years 2008 through 2015.".

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