II

105TH CONGRESS

2D SESSION S. 1866

To provide assistance to improve research regarding the quality and effectiveness of health care for children, to improve data collection regarding

children’s health, and to improve the effectiveness of health care delivery

systems for children.

IN THE SENATE OF THE UNITED STATES

MARCH 26, 1998

Mr. DEWINE introduced the following bill; which was read twice and referred

to the Committee on Labor and Human Resources

A BILL

To provide assistance to improve research regarding the quality and effectiveness of health care for children, to improve data collection regarding children’s health, and

to improve the effectiveness of health care delivery systems for children.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE.

4 This Act may be cited as the ‘‘Child Health Care

5 Quality Research Improvement Act’’.

6 SEC. 2. FINDINGS.

7 Congress finds the following:
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1 (1) There is increased emphasis on using evi2 dence of improved health care outcomes and cost ef3 fectiveness to justify changes in our health care sys4 tem.

5 (2) There is a growing movement to use health

6 care quality measures to ensure that health care

7 services provided are appropriate and likely to im8 prove health.

9 (3) Few health care quality measures exist for

10 children, especially for the treatment of acute and

11 chronic conditions.

12 (4) A significant number of children in the

13 United States have health problems, and the per14 centage of children with special health care needs is

15 increasing.

16 (5) Children in the health care marketplace

17 have unique health attributes, including a child’s de18 velopmental vulnerability, differential morbidity, and

19 dependency on adults, families, and communities.

20 (6) Children account for less than 15 percent of

21 the national health care spending, and do not com22 mand a large amount of influence in the health care

23 marketplace.

24 (7) The Federal government is the major payer

25 of children’s health care in the United States.
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1 (8) Numerous scientifically sound measures

2 exist for assessing quality of health care for adults,

3 and similar measures should be developed for assess4 ing the quality of health care for children.

5 (9) The delivery structures and systems that

6 provide care for children are necessarily different

7 than systems caring for adults, and therefore require

8 appropriate types of quality measurements and im9 provement systems.

10 (10) Improving quality measurement and mon11 itoring will—

12 (A) assist health care providers in identify13 ing ways to improve health outcomes for com14 mon and rare childhood health conditions;

15 (B) assist consumers and purchasers of

16 health care in determining the value of the

17 health care products and services they are re18 ceiving or buying; and

19 (C) assist providers in selecting effective

20 treatments and priorities for service delivery.

21 (11) Because of the prevalence and patterns of

22 children’s medical conditions, research on improving

23 care for relatively rare or specific conditions must be

24 conducted across multiple institutions and practice
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1 settings in order to guarantee the validity and gener2 alizability of research results.

3 SEC. 3. DEFINITIONS.

4 In this Act:

5 (1) HIGH PRIORITY AREAS.—the term ‘‘high

6 priority areas’’ means areas of research that are of

7 compelling scientific or public policy significance,

8 that include high priority areas of research identified

9 by the Conference on Improving Quality of Health

10 Care for Children: An Agenda for Research (May,

11 1997), and that—

12 (A) are consistent with areas of research

13 as defined in paragraphs (1)(A) and (2) of sec14 tion 1142(a) of the Social Security Act;

15 (B) are relevant to all children or to spe16 cific subgroups of children; or

17 (C) are consistent with such other criteria

18 as the Secretary may require.

19 (2) LOCAL COMMUNITY.—The term ‘‘local com20 munity’’ means city, county, and regional govern21 ments, and research institutes in conjunction with

22 such cities, counties, or regional governments.

23 (3) PEDIATRIC QUALITY OF CARE AND OUT24 COMES RESEARCH.—The term ‘‘pediatric quality of

25 care and outcomes research’’ means research involv-
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1 ing the process of health care delivery and the out2 comes of that delivery in order to improve the care

3 available for children, including health promotion

4 and disease prevention, diagnosis, treatment, and re5 habilitation services, including research to—

6 (A) develop and use better measures of

7 health and functional status in order to deter8 mine more precisely baseline health status and

9 health outcomes;

10 (B) evaluate the results of the health care

11 process in real-life settings, including variations

12 in medical practices and patterns, as well as

13 functional status, clinical status, and patient

14 satisfaction;

15 (C) develop quality improvement tools and

16 evaluate their implementation in order to estab17 lish benchmarks for care for specific childhood

18 diseases, conditions, impairments, or popu19 lations groups;

20 (D) develop specific measures of the qual21 ity of care to determine whether a specific

22 health service has been provided in a technically

23 appropriate and effective manner, that is re24 sponsive to the clinical needs of the patient, and

25 that is evaluated in terms of the clinical and
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1 functional status of the patient as well as the

2 patient’s satisfaction with the care; or

3 (E) assess policies, procedures, and meth4 ods that can be used to improve the process and

5 outcomes of the delivery of care.

6 (4) PROVIDER-BASED RESEARCH NETWORKS.—

7 The term ‘‘provider-based research network’’ refers

8 to 1 of the following which exist for the purpose of

9 conducting research:

10 (A) A hospital-based research network that

11 is comprised of a sufficient number of children’s

12 hospitals or pediatric departments of academic

13 health centers.

14 (B) A physician practice-based research

15 network that is comprised of a sufficient num16 ber of groups of physicians practices.

17 (C) A managed care-based research net18 work that is comprised of a sufficient number

19 of pediatric programs of State-licensed health

20 maintenance organizations or other State cer21 tified managed care plans.

22 (D) A combination provider-based research

23 network that is comprised of all or part of a

24 hospital-based research network, a physician
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1 practice-based research network, and a man2 aged care-based research network.

3 (5) SECRETARY.—The term ‘‘Secretary’’ means

4 the Secretary of Health and Human Services.

5 SEC. 4. EXPANSION OF THE HEALTH SERVICES RESEARCH

6 WORKFORCE.

7 (a) GRANTS.—The Secretary shall annually award

8 not less than 10 grants to eligible entities at geographi9 cally diverse locations throughout the United States to en10 able such entities to carry out research training programs

11 that are dedicated to child health services research train12 ing initiatives at the doctoral, post-doctoral, and junior

13 faculty levels.

14 (b) ELIGIBILITY.—To be eligible to receive a grant

15 under subsection (a), an entity shall—

16 (1) be a public or nonprofit private entity; and

17 (2) prepare and submit to the Secretary an ap18 plication, at such time, in such manner, and contain19 ing such information as the Secretary may require.

20 (c) LIMITATION.—A grant awarded under this sec21 tion shall be for an amount that does not exceed $500,000.

22 (d) AUTHORIZATION OF APPROPRIATIONS.—There

23 are authorized to be appropriated to carry out this section,

24 $5,000,000 for each of the fiscal years 1999 through

25 2003.
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1 SEC. 5. DEVELOPMENT OF CHILD HEALTH IMPROVEMENT

2 RESEARCH CENTERS AND PROVIDER-BASED

3 RESEARCH NETWORKS.

4 (a) GRANTS.—In order to address the full continuum

5 of pediatric quality of care and outcomes research, to link

6 research to practice improvement, and to speed the dis7 semination of research findings to community practice set8 tings, the Secretary shall award grants to eligible entities

9 for the establishment of—

10 (1) not less that 10 national centers for excel11 lence in child health improvement research at geo12 graphically diverse locations throughout the United

13 States; and

14 (2) not less than 5 national child health pro15 vider quality improvement research networks at geo16 graphically diverse locations throughout the United

17 States, including at least 1 of each type of network

18 as described in section 3(4).

19 (b) ELIGIBILITY.—To be eligible to receive a grant

20 under subsection (a), an entity shall—

21 (1) for purposes of—

22 (A) subsection (a)(1), be a public or non23 profit entity, or group of entities, including uni24 versities, and where applicable their schools of

25 Public Health, research institutions, or chil26 dren’s hospitals, with multi-disciplinary exper-
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1 tise including pediatric quality of care and out2 comes research and primary care research; or

3 (B) subsection (a)(2), be a public or non4 profit institution that represents children’s hos5 pitals, pediatric departments of academic health

6 centers, physician practices, or managed care

7 plans; and

8 (2) prepare and submit to the Secretary an ap9 plication, at such time, in such manner, and contain10 ing such information as the Secretary may require,

11 including—

12 (A) in the case of an application for a

13 grant under subsection (a)(1), a demonstration

14 that a research center will conduct 2 or more

15 research projects involving pediatric quality of

16 care and outcomes research in high priority

17 areas; or

18 (B) in the case of an application for a

19 grant under subsection (a)(2)—

20 (i) a demonstration that the applicant

21 and its network will conduct 2 or more

22 projects involving pediatric quality of care

23 and outcomes research in high priority

24 areas;
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1 (ii) a demonstration of an effective

2 and cost-efficient data collection infra3 structure;

4 (iii) a demonstration of matching

5 funds equal to the amount of the grant;

6 and

7 (iv) a plan for sustaining the financ8 ing of the operation of a provider-based

9 network after the expiration of the 5-year

10 term of the grant.

11 (c) LIMITATIONS.—A grant awarded under sub12 section (a)(1) shall not exceed $1,000,000 per year and

13 be for a term of more that 5 years and a grant awarded

14 under subsection (a)(2) shall not exceed $750,000 per

15 year and be for a term of more than 5 years.

16 (d) AUTHORIZATION OF APPROPRIATIONS.—There

17 are authorized to be appropriated—

18 (1) to carry out subsection (a)(1), $10,000,000

19 for each of the fiscal years 1999 through 2003; and

20 (2) to carry out subsection (a)(2), $3,750,000

21 for each of the fiscal years 1999 through 2003.

22 SEC. 6. RESEARCH IN SPECIFIC HIGH PRIORITY AREAS.

23 (a) ADDITIONAL FUNDS FOR GRANTS.—From

24 amounts appropriated under subsection (c), the Secretary

25 shall provide support, through grant programs authorized
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1 on the date of enactment of this Act, to entities deter2 mined to have expertise in pediatric quality of care and

3 outcomes research. Such additional funds shall be used to

4 improve the quality of children’s health, especially in high

5 priority areas, and shall be subject to the same conditions

6 and requirements that apply to funds provided under the

7 existing grant program through which such additional

8 funds are provided.

9 (b) ADVISORY COMMITTEE.—

10 (1) IN GENERAL.—To evaluate progress made

11 in pediatric quality of care and outcomes research in

12 high priority areas, and to identify new high priority

13 areas, the Secretary shall establish an advisory com14 mittee which shall report annually to the Secretary.

15 (2) MEMBERSHIP.—The Secretary shall ensure

16 that the advisory committee established under para17 graph (1) includes individuals who are—

18 (A) health care consumers;

19 (B) health care providers;

20 (C) purchasers of health care;

21 (D) representative of health plans involved

22 in children’s health care services; and

23 (E) representatives of Federal agencies in24 cluding—
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1 (i) the Agency for Health Care Policy

2 and Research;

3 (ii) the Centers for Disease Control

4 and Prevention;

5 (iii) the Health Care Financing Ad6 ministration;

7 (iv) the Maternal and Child Health

8 Bureau;

9 (v) the National Institutes of Health;

10 and

11 (vi) the Substance Abuse and Mental

12 Health Services Administration.

13 (3) EVALUATION OF RESEARCH.—The advisory

14 committee established under paragraph (1) shall

15 evaluate research in high priority areas using cri16 teria that include—

17 (1) the generation of research that includes

18 both short and long term studies;

19 (2) the ability to foster public and private

20 partnerships; and

21 (3) the likelihood that findings will be

22 transmitted rapidly into practice.

23 (c) AUTHORIZATION OF APPROPRIATIONS.—There

24 are authorized to be appropriated to carry out this section,
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1 $12,000,000 for each of the fiscal years 1999 through

2 2003.

3 SEC. 7. IMPROVING CHILD HEALTH DATA AND DEVELOP4 ING BETTER DATA COLLECTION SYSTEMS.

5 (a) SURVEY.—The Secretary shall provide assistance

6 to enable the appropriate Federal agencies to—

7 (1) conduct ongoing biennial supplements and

8 initiate and maintain a longitudinal study on chil9 dren’s health that is linked to the appropriate exist10 ing national surveys (including the National Health

11 Interview Survey and the Medical Expenditure Panel

12 Survey) to—

13 (A) provide for reliable national estimates

14 of health care expenditures, cost, use, access,

15 and satisfaction for children, including unin16 sured children, poor and near-poor children,

17 and children with special health care needs;

18 (B) enhance the understanding of the de19 terminants of health outcomes and functional

20 status among children with special health care

21 needs, as well as an understanding of these

22 changes over time and their relationship to

23 health care access and use; and
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1 (C) monitor the overall national impact of

2 Federal and State policy changes on children’s

3 health care; and

4 (2) develop an ongoing 50-State survey to gen5 erate reliable State estimates of health care expendi6 tures, cost, use, access, satisfaction, and quality for

7 children, including uninsured children, poor and

8 near-poor children, and children with special health

9 care needs.

10 (b) GRANTS.—The Secretary shall award grants to

11 public and nonprofit entities to enable such entities to de12 velop the capacity of local communities to improve child

13 health monitoring at the community level.

14 (c) ELIGIBILITY.—To be eligible to receive a grant

15 under subsection (b), an entity shall—

16 (1) be a public or nonprofit entity; and

17 (2) prepare and submit to the Secretary an ap18 plication, at such time, in such manner, and contain19 ing such information as the Secretary may require.

20 (d) AUTHORIZATION OF APPROPRIATIONS.—There

21 are authorized to be appropriated to carry out this section,

22 $14,000,000 for each of the fiscal years 1999 through

23 2003, of which—

24 (1) $6,000,000 shall be made available in each

25 fiscal year for grants under subsection (a)(1);
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1 (2) $4,000,000 shall be made available in each

2 fiscal year for grants under subsection (a)(2); and

3 (3) $4,000,000 shall be made available in each

4 fiscal year for grants under subsection (b).

5 SEC. 8. OVERSIGHT.

6 Not later than after the date of enactment

7 of this Act, The Secretary shall prepare and submit a re8 port to Congress on progress made in pediatric quality of

9 care and outcomes research, including the extent of ongo10 ing research, programs, and technical needs, and the De11 partment of Health and Human Services’ priorities for

12 funding pediatric quality of care and outcomes research.

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