New Concepts and Paradigms
Child Health Services Research: Accomplishments, Opportunities, Challenges, and Strategies
An Ideal Maternal and Child Health Research Enterprise
Research Can and Should Inform Public Health Practice and Policy
Comparing Public Health Practice with Public Health in Academia
Partners in Prevention Study
Longitudinal Study Research as a Collaborative Endeavor
When Research Makes a Difference: A Case Study
On October 16, 2000, participants with a variety of backgrounds in child health met to explore how to strengthen science-based practice and policy through greater integration of efforts. This conference summary describes presentations and gives commentary about the meeting, as well as conclusions of workgroups.
Used with permission from the Women's and Children's Health Policy Center,© 2000 the Johns Hopkins University School of Public Health.
"The evolution of a progressive society is dependent upon the application of new knowledge to address its problems and challenges."— Shapiro and Coleman, 2000.
The knowledge base related to child health is expanding rapidly. Concurrently, there is an increased emphasis on evidence-based practice in both clinical and population health. The devolution of accountability for health policy, systems, and services presents challenges and opportunities related to the application of research findings for State- and community-level child health policies and programs. Meanwhile, the social and political context for child health in the United States shifts continuously.
For these reasons, an invitational meeting was held to explore venues for strengthening science-based practice and policy through greater integration of efforts. The Agency for Healthcare Research and Quality (AHRQ), the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), and the Women's and Children's Health Policy Center at Johns Hopkins University (WCHPC) convened the meeting. Partners included:
- The Association of Maternal and Child Health Programs (AMCHP).
- The Academy for Health Services Research and Health Policy (AHSRHP).
- The Association of Teachers of Maternal and Child Health (ATMCH).
Seventy individuals participated in the 1-day forum held October 16, 2000, in Baltimore, MD. Participants reflected a balanced representation:
- State Maternal and Child Health (MCH) program directors and State agency collaborators.
- Child health researchers.
- Relevant Federal agencies.
- National professional and trade organizations.
- Foundations with a tradition of interest in child health concerns.
The meeting was solution-oriented and drew on participant expertise to craft a multi-organizational action agenda to realize the goal of enhanced child health research and practice collaboration and integration.
- Promote new and strengthen existing collaborations between public maternal and child health leaders at the State level and child health researchers.
- Engage in focused discussion of specific contemporary challenges in child health research, practice, and policy as these relate to organization of clinical care, community interventions, system structures, and organization of services on a population basis.
- Identify barriers to translating research into practice and develop strategies for overcoming these barriers.
Recent attention has focused on what Ernest Boyer termed in 1990 to be the "scholarship of application." (Shapiro and Coleman, 2000) This translation of new knowledge into practical applications to solve problems of individuals and society appears to take on new meaning as we continue to witness the intended and unintended consequences of social experiments such as managed care, or welfare families being penalized for failure to vaccinate their children (Minkovitz et al., 1999). In the September 2000 issue of Academic Medicine, Shapiro and Coleman emphasize the importance of Boyer's ideas while recognizing both incentives (such as availability of funding for applied research) and disincentives (such as limitations in methodology and lesser prestige) to promoting such scholarship (Shapiro and Coleman, 2000).
Today, diverse fields increasingly promote the use of "evidence-based" medicine and "prevention science." Researchers and practitioners alike are challenged more than ever to close the distance between practice and science. Stuart Cohen noted in a recent editorial published in Medical Care the abundance of efficacy trials and, until recently, the relative lack of attention focused on what is effective in the short run or sustainable in the long run.
The ideas discussed throughout the day perhaps were not groundbreaking or revolutionary; gaps between science and practice exist also in fields such as psychology, physics, chemistry, and education (Buetler et al., 1995). On the other hand, several examples of application of child health research can indeed be found. Stoddard has cited Robert Guthrie's population-based screening of newborn infants for phenylketonuria (Stoddard, 1997).
Gordon Berlin has noted how research conducted by the Manpower Demonstration Research Corporation was used in the design of changes to the welfare system. Zill et al. has noted the influence of the Family and Child Experiences Survey (FACES) study on helping Head Start programs incorporate more family literacy efforts into their curriculum in the future (Zill et al., 1999). These cases can be studied to generate models applicable to other fields.
Jeffrey Stoddard wrote that public policy is determined by social forces (such as economic and market forces, as well as social and political factors that influence public and private decisions on resource allocation and use), existing regulations, and, as available and not in conflict with the previous two, research findings. He further noted, however, that research findings that are not readily adopted on release "may have an influence years later when the social and political landscapes have undergone change" (Stoddard, 1997).
Others point out that while research is cited to some degree during legislative debates, reference is made to such studies to a greater extent in conference committees and among the House and Senate staff (Haskins, 1991). It is important to ensure that social science research studies are used appropriately and not misinterpreted as part of the political process. As Haskins noted, "The tendency of politicians to use research selectively places a special responsibility on researchers who leap into the policy fray" (Haskins, 1991).
Research related to health of pediatric populations occurs in or is sponsored by many Federal agencies. These include:
- The National Institute of Child Health and Human Development and other units of the National Institutes of Health (Stiehm, 1996).
- The Centers for Disease Control and Prevention.
- The Substance Abuse and Mental Health Services Administration.
- The Health Care Financing Administration (renamed the Centers for Medicare and Medicaid Services).
- The Maternal and Child Health Bureau (MCHB, the Health Resources and Services Administration [HRSA]).
The Title V1 statutory structure is specifically designed based on the interdependence of research and MCH programming in the States. Gontran Lamberty explained this further, noting specifically studies on infant mortality conducted during the early 1920s and, four decades later, the health services research study published in 1962 under the title Illness Among Children. "The collection of descriptive statistics, conclusions, and recommendations in Illness Among Children was the driving force that led in the late 1960s to the Federal legislation that created the Children and Youth Projects, a national program of comprehensive outpatient services designed to reduce 'the lag in the health care of children from low-income, from nonwhite, and from rural families'" (Lamberty, 1996).
The Fourth National Title V Maternal and Child Health Research Priorities Conference was held in 1994 (Lamberty et al., 1996). For this conference, the Federal MCH agency brought together a broad range of constituents to review the current knowledge base (through 18 background papers), comment on areas needing further research, and recommend priorities for a Title V research agenda into the next century.
In the context of this 1994 MCHB conference, the Association of Maternal and Child Health Programs (AMCHP), representing the State public health policy and administrative leaders of Title V and associated MCH public programs, articulated the priorities of the State programs with respect to research to include:
- Enhanced dissemination.
- Coordinated Federal research programs (internally, and across Federal research agencies).
- Technical assistance and other support to enhance opportunities for States to link with academic communities to develop partnerships for research and evaluation.
Applied, multidisciplinary studies of State and local community populations was promoted in AMCHP's platform, as well as expanded MCHB capacity for policy research and research on the implementation and management of public health programs and interventions.
In recent years, therefore, MCHB has implemented several additional initiatives for sharing sponsored research findings with the State health departments. MCH Research Roundtable Seminars that inform professionals about findings from completed applied Title V-supported research projects are broadcast nationally. MCHB also publishes newsletters dedicated to the application of findings from MCHB supported research ("MCH Research Exchange" and "Title V Today").
AHRQ also seeks connections with public health leaders at State and local levels. Through its User Liaison Program, public health research concerns and current needs for public health programming are identified, although these needs and concerns are not circumscribed to child health issues. Among the most recent AHRQ-sponsored meetings specific to children have been the May 1997 conference regarding quality of health care for children (Halfon et al., 1998), and the June 1999 and 2000 meetings, which reaffirmed the need to promote a child health services research agenda.
Connections between Federal level researchers and the public health agencies that steward policy and programming on a population level within States and communities are less evident. Researchers from the different traditions have convened at times with a special focus on children (DeFriese et al., 1985). AMCHP and the Association of Teachers of MCH (ATMCH) have met concurrently annually for the past 15 years. A major intent of jointly convened annual meetings of these organizations has been to bring the two sets of professionals and fields together to explore national concerns and dialogue towards creating a shared agenda.2
Confronting child health services research challenges specifically, as noted by DuPlessis and colleagues (1998), requires the expertise of the State MCH program leaders as well as those scholars who can integrate principles of children's health with traditional health services research methods and community based orientations (DuPlessis et al., 1998). Moreover, State MCH program leaders may provide necessary access to populations of children and their families, a growing proportion of who receive care from a mix of office-based practices and providers practicing in nontraditional settings. While MCH agency organizational efforts intend to bring the fields together, barriers to optimal interaction persist.
1In 1935, Congress enacted Title V of the Social Security Act, which authorized the Maternal and Child Health Services Programs. Today, Title V is administered by the Maternal and Child Health Bureau (MCHB), HRSA. The MCHB is charged with the primary responsibility for promoting and improving the health of our Nation's mothers and children.
2These meetings were held in conjunction with the Academy for Health Services Research and Health Policy and were cosponsored by National Association of Children's Hospitals and Related Institutions and the American Academy of Pediatrics. More information about these meetings is available on the AHRQ child health Web page at .
The day of the meeting was carefully structured to present the current status of both child health research and the translation of findings into practice and policy. The intent of the morning presentations and discussions were to prepare participants with a common set of ideas in order to articulate a vision for developing bridges between research, policy, and practice for child health. Knowledge of where the field stands provided a basis for defining the challenge and for continuing the journey towards solving the problems that exist in it. Examples of collaborations contributed possible strategies for linking research and practice. Working groups afforded meeting participants the opportunity to tackle these challenges further. The resulting thoughts and ideas were then reported out in plenary, and expressed in commentary.
Dr. Lisa Simpson3 presented information on accomplishments, opportunities, challenges and strategies in child health services research (CHSR). First, she documented how research in the field of CHSR has resulted in new knowledge to improve the delivery of health care to children. Studies have shown, for example:
- The positive role health insurance plays in the number of visits children make for primary and specialty care.
- The equivocal effect managed care systems have on children's access to health care service.
- The improvement of health outcomes for children who receive care in hospitals with a high volume of patients.
A review by Simpson and Fraser (1999) showed that there is no systematic difference in access to and use of health care services dependent on type of managed care plan. However, little is understood regarding children's satisfaction with their managed-care-based health care, or access to and/or use of care within the managed care system by children with special health care needs (Simpson and Fraser, 1999).
Outcomes research is defined by Clancy and Eisenberg as the study of the end results of health services that takes patients' experiences, preferences, and values into account; it is intended to provide scientific evidence relating to decisions made by all who participate in health care (Clancy and Eisenberg, 1998). Such research has shown, for example, that hospitals with high volumes of patients have significantly better outcomes than those with lower volumes (Dudley et al., 2000). Outcomes research delves into the many types of interventions that can and have been used to achieve the desired end results. In addition to clinical interventions, organizational, public health, and other interventions that are social, economic or educational in nature should be studied.
Another topic for research was first studied by Haggerty and colleagues in the early 1970s, with support from AHRQ, among others. The Community Child Health Studies assessed the impact of the organization of health care on health outcomes, specifically:
- The effects of Medicaid on health behaviors.
- The impact of the Rochester Neighborhood Health Center on children's hospitalization rates.
There has been a rebirth of this type of research of late, in the form of the Child Health Insurance Research Initiative (CHIRI™) grants, research on outcomes of referral patients in Medicaid, and the impact of regionalization and market forces on neonatal death, further expanding the knowledge base.
While much has been accomplished in child health research, Dr. Simpson noted that the tools and talent are available to accomplish even more. Databases are available from the Federal and State Governments as well as private sources that provide large sample populations. AHRQ released planning grants for 19 Primary Care Practice-based Research Networks, 3 of which are pediatric networks such as Pediatric Research in Office Settings (PROS),4 providing another source of information. Opportunities exist for further training, provided to either institutions or individuals and funded through innovation grants, grants with a focus on minorities, or career development grants given by AHRQ, HRSA, the National Institute of Mental Health (NIMH) and foundations.
A major challenge for research is its translation into practice. Dr. Simpson quoted Congressman John Porter as saying "What we really want to get at is not how many reports have been done, but how many people's lives are being bettered by what has been accomplished. In other words, is it being used, is it being followed, is it actually being given to patients?... [W]hat effect is it having on people?" (1998).
This is the basis of AHRQ's TRIP (Translating Research Into Practice) program. Translation into practice focuses on ensuring that, for example, based on the research, appropriate services are being provided or quality is being improved.
Dr. Simpson emphasized that information dissemination is an important precursor to translation. AHRQ has established several mechanisms for disseminating information, including:
State and local health agencies use information from the Clearinghouse™, Evidence-based Practice Center reports, and CAHPS® (Consumer Assessment of Health Plans) on SCHIP and Medicaid to support and improve their policies and practice.
The question remains, "How can we improve partnerships between research and communities?" For the future, changes are needed in public policy and the health care market and system that will enhance our ability to pursue the appropriate research questions and apply the findings in daily practice. "Users" of research have cited a focus on vulnerable subgroups as one of several issues where additional studies are needed. Focusing research on topics identified by the "users" who are faced with the challenge of translating the findings into practice may be a good first step towards achieving our goal of research informing action.
3Lisa Simpson, M.B., B.Ch., M.P.H., Deputy Director of AHRQ.
Dr. Gontran Lamberty5 contrasted the "Year 2010 National Health Promotion and Disease Prevention Objectives" with the "1989 Omnibus Budget Reconciliation Act (OBRA)" revision of the Title V legislation. These two documents are the sources of responsibility and accountability under which the States and the central office of MCHB operate. From there he described an ideal MCHB research enterprise that would offer a platform from which to carry out the responsibility and accountability charges of these documents. He concluded his remarks with a plea for the States to be more realistic about payoffs in research and for them to seek changes in their organizational culture from "research aversive" to "research embracing."
2010 Goals and Objectives and 1989 OBRA. The Year 2010 national health objectives (Department of Health and Human Services, 2000) set an ambitious agenda that seeks to integrate the efforts of a vast cast of players with conflicting priorities. It requires that we adopt a proactive approach to the health of mothers and children by instituting a national planning process that assesses needs, coordinates resources, plans, executes, and monitors courses of action, and evaluates at set intervals the effectiveness of the courses of action taken.
What the Year 2010 document explicates and requires is essentially what the 1989 OBRA revision of the Title V legislation expounded a decade or so ago. Whether by design or coincidence, these two documents are very supportive of each other. They are supportive in their proactive orientation and in placing responsibility and accountability at all levels. The majority of the responsibility, however, seems to be placed on the State Health Departments and the Federal agencies charged with safeguarding the health of mothers and children, particularly the Maternal and Child Health Bureau.
Research often has been viewed as the instrument for solving the seemingly intractable maternal and child health problems that the Year 2010 and 1989 OBRA documents have given the States and the MCHB responsibility to ameliorate. A case in point is the current racial and ethnic differential in infant mortality. Differences have existed among the States and between the States and the Federal offices on how favorably this view of research is held. Differences also have existed on how to go about using research to inform service delivery and policy, and on what type of research the MCHB should be supporting.
Many in the service professions view research as a luxury, partly because they feel that research uses scarce resources needed to support services. Others see research as a necessity—one that requires a long-term commitment of resources and realistic expectations about payoffs. However, without research:
- The complexities underlying most human problems might never be exposed.
- Efforts toward solutions would be more likely to miss their target.
- Scarce resources would be expended with little or no payoffs.
Nowhere is support for the latter view of research more convincing than in the private sector, particularly in the high tech and biomedical industries. Today, as in the past, the world's most successful companies in these two industries spend a sizable part of their profits in research and new product development, and allow the investigative process in their organization to proceed reasonably unfettered. In addition, these companies have a more realistic long-term view of research than their less successful counterparts. They know that expansion of the scientific knowledge base through research does not materialize overnight, and that at the research project level the activities subsumed under them often do not produce more than small gains in knowledge.
This measured approach to research keeps payoff expectations realistic. The realism, unbelievable as it may seem, fosters rather than hinders risk taking and the pursuit of excellence and innovation. Over time, these pursuits lead to:
- The creation of new products.
- Improvement of existing ones.
- Retention and expansion of markets necessary for surviving in today's competitive world economy.
Based on this example of the private sector, Dr. Lamberty's ideal MCHB research enterprise would have as a minimum three components:
- An extramural research program.
- A "knowledge synthesizing unit."
- One or more MCH research and development laboratories.
The extramural research program, using the investigator-initiated approach, would focus on applied and basic MCH science research. The program would study such topics as:
- Cost-effective approaches for delivering integrated MCH services.
- Factors influencing the decisionmaking processes of patients seeking care.
- Interactions between the caregiver and patient during the health care encounter.
- Best practices for reaching out to program target populations and bringing them into care.
- Determinants of preventive health action behaviors such as those surrounding prenatal care and intended and unintended injuries.
The "knowledge synthesizing unit" would conduct state-of-the-art assessments of the scientific knowledge base in areas relevant to MCH programmatic concerns, and would also act as the evaluator and synthesizer of the published findings deriving from the research funded by the extramural research component. A central role of this unit would be responsibility for mining existing Federal and private databases and special surveys. Keeping abreast includes:
- The ability to detect emergent problems.
- Being able to define the nature of the problems.
- In conjunction with the synthesized knowledge, to conceive the first iteration of "concept programs" that would be further developed and formally tested by the research and development laboratories.
The MCH research and development laboratories would undertake long-term, carefully integrated programs of health service delivery and research in preconceptional, prenatal, infant, child, and adolescent populations, including services for children with special health care needs. The laboratories further would develop the first iteration of concept programs conceived by the "knowledge synthesizing unit":
- These first iteration concept programs would be modified in place per continuous evaluation in order for them to reach the prototype stage.
- Using experimental and quasi-experimental study designs to establish internal validity and generalizability, each prototype would then be tested formally at the MCH laboratory of origin and/or other health care delivery settings. Formal testing of prototypes could take place singly or as part of a larger effort.
- Prototypes that meet successfully the rigorous experimental and quasi-experimental evaluation conditions, and that, under the gradual lessening of experimental controls are seen to be effective and generalizable in real world organizational contexts, would be promoted for wide scale use in State, county and city MCH programs under a controlled demonstration initiative.
Dr. Lamberty contends that the ideal MCH research enterprise is doable and ultimately likely to be cost-effective. States would receive "a substantial piece of the pie" through Federal and State partnerships, and through the development of their own capability for conducting research and interpreting scientific research findings. States will have to create an organizational culture promoting rather than hindering scientific research and formal evaluation of the programs they administer. States would have to view research as a long-term investment whose payoffs will surely come, although at a lower rate of accrual than may be desired.
5Gontran Lamberty, Dr.P.H., Chief, Research Branch, Maternal and Child Health Bureau, HRSA.