Child Health Care Quality Research Improvement Act

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Child Health Care Quality Research 
Improvement Act''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (1) There is increased emphasis on using evidence of 
        improved health care outcomes and cost effectiveness to justify 
        changes in our health care system.
            (2) There is a growing movement to use health care quality 
        measures to ensure that health care services provided are 
        appropriate and likely to improve health.
            (3) Few health care quality measures exist for children, 
        especially for the treatment of acute and chronic conditions.
            (4) A significant number of children in the United States 
        have health problems, and the percentage of children with 
        special health care needs is increasing.
            (5) Children in the health care marketplace have unique 
        health attributes, including a child's developmental 
        vulnerability, differential morbidity, and dependency on 
        adults, families, and communities.
            (6) Children account for less than 15 percent of the 
        national health care spending, and do not command a large 
        amount of influence in the health care marketplace.
            (7) The Federal government is the major payer of children's 
        health care in the United States.
            (8) Numerous scientifically sound measures exist for 
        assessing quality of health care for adults, and similar 
        measures should be developed for assessing the quality of 
        health care for children.
            (9) The delivery structures and systems that provide care 
        for children are necessarily different than systems caring for 
        adults, and therefore require appropriate types of quality 
        measurements and improvement systems.
            (10) Improving quality measurement and monitoring will--
                    (A) assist health care providers in identifying 
                ways to improve health outcomes for common and rare 
                childhood health conditions;
                    (B) assist consumers and purchasers of health care 
                in determining the value of the health care products 
                and services they are receiving or buying; and
                    (C) assist providers in selecting effective 
                treatments and priorities for service delivery.
            (11) Because of the prevalence and patterns of children's 
        medical conditions, research on improving care for relatively 
        rare or specific conditions must be conducted across multiple 
        institutions and practice settings in order to guarantee the 
        validity and generalizability of research results.

SEC. 3. DEFINITIONS.

    In this Act:
            (1) High priority areas.--the term ``high priority areas'' 
        means areas of research that are of compelling scientific or 
        public policy significance, that include high priority areas of 
        research identified by the Conference on Improving Quality of 
        Health Care for Children: An Agenda for Research (May, 1997), 
        and that--
                    (A) are consistent with areas of research as 
                defined in paragraphs (1)(A) and (2) of section 1142(a) 
                of the Social Security Act;
                    (B) are relevant to all children or to specific 
                subgroups of children; or
                    (C) are consistent with such other criteria as the 
                Secretary may require.
            (2) Local community.--The term ``local community'' means 
        city, county, and regional governments, and research institutes 
        in conjunction with such cities, counties, or regional 
        governments.
            (3) Pediatric quality of care and outcomes research.--The 
        term ``pediatric quality of care and outcomes research'' means 
        research involving the process of health care delivery and the 
        outcomes of that delivery in order to improve the care 
        available for children, including health promotion and disease 
        prevention, diagnosis, treatment, and rehabilitation services, 
        including research to--
                    (A) develop and use better measures of health and 
                functional status in order to determine more precisely 
                baseline health status and health outcomes;
                    (B) evaluate the results of the health care process 
                in real-life settings, including variations in medical 
                practices and patterns, as well as functional status, 
                clinical status, and patient satisfaction;
                    (C) develop quality improvement tools and evaluate 
                their implementation in order to establish benchmarks 
                for care for specific childhood diseases, conditions, 
                impairments, or populations groups;
                    (D) develop specific measures of the quality of 
                care to determine whether a specific health service has 
                been provided in a technically appropriate and 
                effective manner, that is responsive to the clinical 
                needs of the patient, and that is evaluated in terms of 
                the clinical and functional status of the patient as 
well as the patient's satisfaction with the care; or
                    (E) assess policies, procedures, and methods that 
                can be used to improve the process and outcomes of the 
                delivery of care.
            (4) Provider-based research networks.--The term ``provider-
        based research network'' refers to 1 of the following which 
        exist for the purpose of conducting research:
                    (A) A hospital-based research network that is 
                comprised of a sufficient number of children's 
                hospitals or pediatric departments of academic health 
                centers.
                    (B) A physician practice-based research network 
                that is comprised of a sufficient number of groups of 
                physicians practices.
                    (C) A managed care-based research network that is 
                comprised of a sufficient number of pediatric programs 
                of State-licensed health maintenance organizations or 
                other State certified managed care plans.
                    (D) A combination provider-based research network 
                that is comprised of all or part of a hospital-based 
                research network, a physician practice-based research 
                network, and a managed care-based research network.
            (5) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.

SEC. 4. EXPANSION OF THE HEALTH SERVICES RESEARCH WORKFORCE.

    (a) Grants.--The Secretary shall annually award not less than 10 
grants to eligible entities at geographically diverse locations 
throughout the United States to enable such entities to carry out 
research training programs that are dedicated to child health services 
research training initiatives at the doctoral, post-doctoral, and 
junior faculty levels.
    (b) Eligibility.--To be eligible to receive a grant under 
subsection (a), an entity shall--
            (1) be a public or nonprofit private entity; and
            (2) prepare and submit to the Secretary an application, at 
        such time, in such manner, and containing such information as 
        the Secretary may require.
    (c) Limitation.--A grant awarded under this section shall be for an 
amount that does not exceed $500,000.
    (d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $5,000,000 for each of the 
fiscal years 1999 through 2003.

SEC. 5. DEVELOPMENT OF CHILD HEALTH IMPROVEMENT RESEARCH CENTERS AND 
              PROVIDER-BASED RESEARCH NETWORKS.

    (a) Grants.--In order to address the full continuum of pediatric 
quality of care and outcomes research, to link research to practice 
improvement, and to speed the dissemination of research findings to 
community practice settings, the Secretary shall award grants to 
eligible entities for the establishment of--
            (1) not less that 10 national centers for excellence in 
        child health improvement research at geographically diverse 
        locations throughout the United States; and
            (2) not less than 5 national child health provider quality 
        improvement research networks at geographically diverse 
        locations throughout the United States, including at least 1 of 
        each type of network as described in section 3(4).
    (b) Eligibility.--To be eligible to receive a grant under 
subsection (a), an entity shall--
            (1) for purposes of--
                    (A) subsection (a)(1), be a public or nonprofit 
                entity, or group of entities, including universities, 
                and where applicable their schools of Public Health, 
                research institutions, or children's hospitals, with 
                multi-disciplinary expertise including pediatric 
                quality of care and outcomes research and primary care 
                research; or
                    (B) subsection (a)(2), be a public or nonprofit 
                institution that represents children's hospitals, 
                pediatric departments of academic health centers, 
                physician practices, or managed care plans; and
            (2) prepare and submit to the Secretary an application, at 
        such time, in such manner, and containing such information as 
        the Secretary may require, including--
                    (A) in the case of an application for a grant under 
                subsection (a)(1), a demonstration that a research 
                center will conduct 2 or more research projects 
                involving pediatric quality of care and outcomes 
                research in high priority areas; or
                    (B) in the case of an application for a grant under 
                subsection (a)(2)--
                            (i) a demonstration that the applicant and 
                        its network will conduct 2 or more projects 
                        involving pediatric quality of care and 
                        outcomes research in high priority areas;
                            (ii) a demonstration of an effective and 
                        cost-efficient data collection infrastructure;
                            (iii) a demonstration of matching funds 
                        equal to the amount of the grant; and
                            (iv) a plan for sustaining the financing of 
                        the operation of a provider-based network after 
                        the expiration of the 5-year term of the grant.
    (c) Limitations.--A grant awarded under subsection (a)(1) shall not 
exceed $1,000,000 per year and be for a term of more that 5 years and a 
grant awarded under subsection (a)(2) shall not exceed $750,000 per 
year and be for a term of more than 5 years.
    (d) Authorization of Appropriations.--There are authorized to be 
appropriated--
            (1) to carry out subsection (a)(1), $10,000,000 for each of 
        the fiscal years 1999 through 2003; and
            (2) to carry out subsection (a)(2), $3,750,000 for each of 
        the fiscal years 1999 through 2003.

SEC. 6. RESEARCH IN SPECIFIC HIGH PRIORITY AREAS.

    (a) Additional Funds for Grants.--From amounts appropriated under 
subsection (c), the Secretary shall provide support, through grant 
programs authorized on the date of enactment of this Act, to entities 
determined to have expertise in pediatric quality of care and outcomes 
research. Such additional funds shall be used to improve the quality of 
children's health, especially in high priority areas, and shall be 
subject to the same conditions and requirements that apply to funds 
provided under the existing grant program through which such additional 
funds are provided.
    (b) Advisory Committee.--
            (1) In general.--To evaluate progress made in pediatric 
        quality of care and outcomes research in high priority areas, 
        and to identify new high priority areas, the Secretary shall 
        establish an advisory committee which shall report annually to 
        the Secretary.
            (2) Membership.--The Secretary shall ensure that the 
        advisory committee established under paragraph (1) includes 
        individuals who are--
                    (A) health care consumers;
                    (B) health care providers;
                    (C) purchasers of health care;
                    (D) representative of health plans involved in 
                children's health care services; and
                    (E) representatives of Federal agencies including--
                            (i) the Agency for Health Care Policy and 
                        Research;
                            (ii) the Centers for Disease Control and 
                        Prevention;
                            (iii) the Health Care Financing 
                        Administration;
                            (iv) the Maternal and Child Health Bureau;
                            (v) the National Institutes of Health; and
                            (vi) the Substance Abuse and Mental Health 
                        Services Administration.
            (3) Evaluation of research.--The advisory committee 
        established under paragraph (1) shall evaluate research in high 
        priority areas using criteria that include--
                    (1) the generation of research that includes both 
                short and long term studies;
                    (2) the ability to foster public and private 
                partnerships; and
                    (3) the likelihood that findings will be 
                transmitted rapidly into practice.
    (c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $12,000,000 for each of the 
fiscal years 1999 through 2003.

SEC. 7. IMPROVING CHILD HEALTH DATA AND DEVELOPING BETTER DATA 
              COLLECTION SYSTEMS.

    (a) Survey.--The Secretary shall provide assistance to enable the 
appropriate Federal agencies to--
            (1) conduct ongoing biennial supplements and initiate and 
        maintain a longitudinal study on children's health that is 
        linked to the appropriate existing national surveys (including 
        the National Health Interview Survey and the Medical 
        Expenditure Panel Survey) to--
                    (A) provide for reliable national estimates of 
                health care expenditures, cost, use, access, and 
                satisfaction for children, including uninsured 
                children, poor and near-poor children, and children 
                with special health care needs;
                    (B) enhance the understanding of the determinants 
                of health outcomes and functional status among children 
                with special health care needs, as well as an 
                understanding of these changes over time and their 
                relationship to health care access and use; and
                    (C) monitor the overall national impact of Federal 
                and State policy changes on children's health care; and
            (2) develop an ongoing 50-State survey to generate reliable 
        State estimates of health care expenditures, cost, use, access, 
        satisfaction, and quality for children, including uninsured 
        children, poor and near-poor children, and children with 
        special health care needs.
    (b) Grants.--The Secretary shall award grants to public and 
nonprofit entities to enable such entities to develop the capacity of 
local communities to improve child health monitoring at the community 
level.
    (c) Eligibility.--To be eligible to receive a grant under 
subsection (b), an entity shall--
            (1) be a public or nonprofit entity; and
            (2) prepare and submit to the Secretary an application, at 
        such time, in such manner, and containing such information as 
        the Secretary may require.
    (d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $14,000,000 for each of the 
fiscal years 1999 through 2003, of which--
            (1) $6,000,000 shall be made available in each fiscal year 
        for grants under subsection (a)(1);
            (2) $4,000,000 shall be made available in each fiscal year 
        for grants under subsection (a)(2); and
            (3) $4,000,000 shall be made available in each fiscal year 
        for grants under subsection (b).

SEC. 8. OVERSIGHT.

    Not later than ________ after the date of enactment of this Act, 
The Secretary shall prepare and submit a report to Congress on progress 
made in pediatric quality of care and outcomes research, including the 
extent of ongoing research, programs, and technical needs, and the 
Department of Health and Human Services' priorities for funding 
pediatric quality of care and outcomes research.

Summary: Child Health Care Quality Research Improvement Act - Directs the Secretary of Health and Human Services to award at least ten grants annually to eligible public or nonprofit private entities at geographically diverse locations throughout the United States for research training programs dedicated to child health services research training initiatives at the doctoral, post-doctoral, and junior faculty levels. Authorizes appropriations for FY 1999 through 2003. Requires the Secretary to award grants to eligible public or nonprofit entities for the establishment of at least ten national centers for excellence in child health improvement research and five national child health provider quality improvement research networks at geographically diverse locations throughout the United States. Describes eligibility requirements. Authorizes appropriations for FY 1999 through 2003. Requires the Secretary to: (1) provide support to entities with expertise in pediatric quality of care and outcomes research for improving the quality of children's health, especially in high priority areas. And (2) establish an advisory committee to evaluate progress in such activities and to identify new high priority areas. Authorizes appropriations for FY 1999 through 2003. Directs the Secretary to provide assistance to enable Federal agencies to: (1) conduct ongoing biennial supplements and initiate and maintain a longitudinal study on children's health linked to existing national surveys to provide for reliable national estimates of health care expenditures, cost, use, access, and satisfaction for children and for other related purposes. And (2) develop an ongoing 50-State survey to generate such estimates. Requires the Secretary to award grants to eligible public and nonprofit entities for developing the capacity of local communities to improve child health monitoring. Authorizes appropriations for FY 1999 through 2003. Directs the Secretary to report to the Congress on progress made in pediatric quality of care and outcomes research.