New Concepts and Paradigms
Conference Summary
Contents
Acknowledgments
Introduction
The Meeting
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
Working Groups
Commentary
Conclusions
References
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.
Meeting Objectives
- 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).
- AHRQ.
- 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 http://www.ahrq.gov/child/.
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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.
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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.
4PROS receives
core funding from the MCHB, and project funding from multiple sources, including
AHRQ and AAP. Select for more information.
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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.
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