[Congressional Record Volume 144, Number 36 (Thursday, March 26, 1998)]
[Senate]
[Pages S2661-S2663]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DeWINE:
  S. 1866. 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; to the 
Committee on Labor and Human Resources.


         the child health care quality research improvement act

  Mr. DeWINE. Mr. President, I rise today to introduce the Child Health 
Care Quality Research Improvement Act. We have been hearing a great 
deal recently about the quality of health care in this country. Most of 
the debate, both here in Congress and back home in our States, has been 
driven, at least in part, by a fear among consumers that efforts to 
control costs and move people into managed care has compromised 
quality. This fear has driven legislation such as the bill we passed 
just last year to provide for 48-hour maternity stays. This year a 
whole host of health care quality bills have been introduced in the 
Congress. Even more such legislation has been moving forward at the 
State level as well.
  As I have learned more and more about the concerns about the quality 
of health care, I have tried to focus particular attention on children, 
how their health care is delivered and whether its quality has been 
compromised. Frankly, I have learned something that I find very 
interesting.
  While the drive to improve quality and reduce cost has driven a great 
deal of new research over the past several years, relatively little has 
been done for children in this area. While we are getting better at 
measuring quality of health care for adults, we have made little such 
progress for our children.
  Between 1993 and 1995, only some 5 percent of the health services 
research study outcomes focused on our children. This is highly 
alarming because I frankly cannot think of anything more critical to 
our Nation's future than the quality of our children's health. Clearly 
we need to correct this serious lack of good health care quality 
measures.
  I have spoken with experts in the field of pediatric research and 
they agree with this assessment. They tell me that we have to do more 
in this field if we expect to improve the care that our children 
receive. Many times, frankly, we don't know exactly which treatments 
are cost effective or best improve a child's quality of life. We don't 
know how to manage children's complicated health problems in ways that 
will allow them to lead normal lives
  We can answer many of these questions if the patient is an adult, but 
we have far fewer answers for our children. Here is one example. One 
study recently found that children have three times greater chance of 
dying after heart surgery at some hospitals than they have at other 
hospitals--three times. We must fix this. That means we have to find 
out why, why one hospital loses three times as many children as 
another. As both a parent and a grandparent, I can speak from firsthand 
experience about the stress and the uncertainty that goes along with 
any childhood illness. To think that a parent's choice of a hospital 
could actually be harmful to a child is certainly a very scary thought 
for a parent.
  Another example is asthma. Asthma is the most common chronic health 
condition in children, affecting 5 million children in this country, 
and that percentage, tragically, is rising. We are not sure why this 
has been happening, but we do know that the quality of health care a 
child receives can dramatically affect the severity of his or her 
asthma. As a result, the better the quality of health care, the less 
time that child spends in the hospital, the fewer visits to the 
emergency room, and the less time a child has to miss from school. If 
we do not even know what kinds of treatment work best for children or 
that different treatments work better in different environments, we 
cannot help. We certainly can't begin to debate how to improve quality 
if we can't even define it or measure it. For that, we need to conduct 
research in real world settings.

  As a means of getting this research into real world settings and 
improving the quality of health care that our children receive, I am 
introducing a bill today entitled the Child Health Care Quality 
Research Improvement Act. This legislation was developed with the help 
of leaders in the pediatric community, child advocates, and health 
services researchers. My bill takes a three-pronged approach to address 
this issue: One, focusing on training; two, research; and three, data 
collection for child health outcomes and effectiveness research.
  Let me start with the first one.
  In order for us to make advances in the study of pediatric health 
outcomes, it is essential that we have researchers who have received 
training in this field. This bill I am introducing today promotes 
research training programs in child health services research at the 
doctoral, post-doctoral, and junior faculty levels. By bringing 
professionals into this very important field, we can ensure that issues 
that affect the lives of children are receiving the attention they 
deserve.
  The second component of this bill establishes research centers and 
networks. The goal of the centers and networks will be to foster 
collaboration among experts in the field of pediatric health care 
quality and effectiveness.

[[Page S2662]]

We envision that these centers and networks will bring together 
pediatric specialists from children's hospitals, physicians in managed 
care plans, statisticians from schools of public health, and other 
experts in the field to work together on research projects and to 
translate these findings into real-world settings where children are 
receiving health care.
  Third, and finally, this legislation contains a component that adds 
supplements to existing national health surveys that are today 
administered by the National Center for Health Statistics and the 
Maternal and Child Health Bureau. In addition to not knowing how to 
measure health care quality in children, other data, like that 
measuring children's use of health care systems and health care 
expenditures, are lacking. Adding supplements to existing surveys is a 
very sensible measure. This bill does not require yet another survey to 
be administered. Rather, it simply adds questions to existing surveys, 
to allow us to collect valuable data on children. This is the type of 
information that we need if we want to look at trends in children's 
health and what we can do to improve their health.
  Mr. President, we are all well aware that children have medical 
conditions and health care needs that are different from those of 
adults. It doesn't make sense to do health services research for adults 
and hope that one size fits all--that the things we learn will make 
sense for children. Federal support for child health quality and 
effectiveness research is vital to ensure that children are receiving 
appropriate health care. We owe it to our Nation's children to train 
health professionals in this important filed, and to support these very 
important research initiatives.
  Mr. President, I ask unanimous consent that the bill be printed in 
the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1866

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

     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

[[Page S2663]]

     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);
       (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.
                                 ______