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Investing In Children

PERSPECTIVE

Lost In Translation? Reflections On The Role Of Research In Improving Health Care For Children

Abstract

 
While the budget of the National Institutes of Health (NIH) has grown to double its 1993 level, growing understanding of the chasm between the "health care we have and the health care we could have" has led to a stronger focus on the need to translate research into practice. Children’s health care has much to gain from this new emphasis; however, the unique features of children’s health, health services, and the history of funding for child health research are limiting our ability to make rapid progress.

This nation’s love affair with science, technology, and the promise of medical breakthroughs has spurred unprecedented growth in federal support for health research over the past decade, as Dan Gitterman and colleagues discuss in their paper.¹ During this same period, understanding of the dramatic shortcomings in the quality of the U.S. health system and the pervasive presence of health care disparities grew such that both quality and disparities are now firmly rooted in the public policy agenda.²

The juxtaposition of increasing research and glaring needs has led to a growing clamor in policy and clinical circles about the need to "translate research into practice." Various terms are used—translation, diffusion, knowledge transfer, implementation, and dissemination—but all focus on fostering the ability to translate research investments into better health care through the use of evidence-based clinical, organizational, and public policy decisions. Put more bluntly, what is the return on investment for health research?

Despite the fact that health services contribute only a fraction to eventual child health and that social determinants (including poverty, income inequality, social support, and education) are powerful drivers of outcomes among children, child health research has yielded fabulous clinical advances during the past twenty years. The success of immunization research alone has meant that some serious medical conditions that I saw routinely during my pediatrics training have been virtually eliminated. Advances in childhood cancer diagnosis and treatment have turned a once uniformly fatal diagnosis into a group of conditions that are now curable in most children. These advances belie the fact that child health services continue to be based on far less evidence than adult health services are.³ This in turn is attributable both to underinvestment in clinical and health services research overall and to the fact that research on children is unique.⁴ Whether research can improve health care for children will depend on how effectively our translation efforts address the following factors.

Salient Issues

Top Salient Issues Recommendations Editor's Notes NOTES

 
Learning how to translate. One thing that we do know unequivocally is that evidence alone rarely leads to improvements in practice or changes in policy.⁵ This is not a new problem. Medical advances and policy innovations are adopted at varying rates, and many barriers to their effective diffusion exist.⁶ For example, despite the fact that the National Heart, Lung, and Blood Institute (NHLBI) first published a comprehensive guideline on asthma management in children in 1991, on average fewer than 60 percent of children with persistent asthma are receiving care today that follows the guideline.⁷

Also, stark distinctions are too often drawn between what it takes to translate research into clinical practice versus policy. Yet I believe that there are many similarities that if acknowledged could lead to more fruitful interactions between these two communities. Each of these two worlds should strive to at least begin decision-making processes with what evidence is available. Clearly, other factors come into play that determine the final course of action. In the policy world, these include values, politics, cost, feasibility, and windows of opportunity. In the clinical world, the counterpart is consideration of patients’ values, preferences, and risk tolerance; feasibility of implementation (for example, likelihood of compliance with a regimen); cost (for example, whether the provider or drug approach is covered by a patient’s plan); and patients’ readiness for change (whether a patient will change behavior such as diet and exercise).

An extensive international literature has emerged over the past twenty years examining the reasons behind this translational gap and reporting on efforts to increase the amount of, and the speed with which, research is adopted into practice or used to inform policy. Most of this literature has not included a focus on children: It has looked primarily either at adults or at the role of research in policymakers’ decision making.

For children’s health care to improve, we need evidence to help us answer two questions: "What works?" and "How do you get providers (or children/families, systems, or policymakers) to do what works?" This latter question is the key to our ability to accelerate translation. Just because we have evidence about what should be done does not mean that we know how to change practice or policy. Dissemination research has been historically underfunded by federal research agencies, and when it has been supported, it has disproportionately focused on how to translate clinical evidence into practice.⁸

Just as important to child health services and policy is research that examines the role of organizational and financing strategies on child health outcomes and quality. For example, we now know that computerized applications can promote evidence-based practices for children in several areas.⁹ What is not known is how to move from single-site studies to widespread deployment of such interventions. The role of payment policies and other system-level incentives in promoting certain provider behavior and system changes is receiving increasing attention. For example, in the Rewarding Results demonstration projects, three of the original six sites do include a focus on childhood immunizations. However, most other "pay for performance" efforts have largely excluded children.¹⁰

Research and evaluation efforts need to focus on what it takes to broadly implement promising initiatives. This critical step should be anticipated at the outset of translation studies and be specifically factored into the timeline and budget for the study. Only through these types of investments will we generate research to promote evidence-based practice as well as research to inform evidence-based management and policy.

Changing the translation paradigm. Jonathan Lomas has written eloquently about changing the way we think about the translation process.¹¹ To be effective, the production, dissemination, and application of knowledge should not follow a linear, unidirectional trajectory from researchers to users. Instead, users—whether clinical decisionmakers or policymakers—and researchers need to interact at multiple points in the process to maximize the probability that the right questions are addressed, that relevant research competes effectively in peer review, that the research actually answers these questions, and that the intended audience uses the results.

While achieving this interaction is never easy, it is much more difficult when targeting child health policy or services. Instead of having one Medicare program as we do for the elderly, we have more than fifty Medicaid programs, thirty-five stand-alone State Children’s Health Insurance Programs (SCHIP), more than fifty Title V programs, and countless other categorical programs for children. While adults receive care largely in clinical settings, children receive care from professionals in clinical settings, health departments, schools, early intervention programs, and day care programs.

The sheer number of potential users increases the complexity of the interaction considerably. One research initiative examining the impact of SCHIP took this challenge seriously and built into its design some opportunities for policymakers’ input and feedback at both the state and federal levels.¹² Grantees were required to establish state advisory groups, and this input was complemented by a national "users’ group" made up of key stakeholder representatives, including the National Governors Association and the National Conference of State Legislatures. Progress is also being made through the increasing use of research networks in which practitioners are involved in the choice, design, and implementation of research studies.¹³

Investing in systems to promote translation. Many of the strategies being used today to foster more rapid translation may be particularly difficult for child health care providers and policymakers to embrace. First, pediatricians and family practitioners have the lowest incomes and may practice more often in undercapitalized settings than other providers do.¹⁴ Resources for translation and improvement, including funds for information technology and participation in improvement collaborations, are therefore less available. Available clinical information systems are largely not tailored to children’s unique needs. For example, many computerized physician order entry (CPOE) systems do not include the feature of weight-based dosing—a critical aspect of pediatric prescribing.¹⁵ Fortunately, some progress is now being made through standard-setting organizations with the establishment of a pediatric Special Interest Group within Health Level 7 (HL7).¹⁶

Second, child health providers and organizations may be even less likely to reap a direct monetary benefit when they do make these investments.¹⁷ The outcomes of effective preventive services for children may not be captured until decades later. Even in areas in which the health benefit is more proximal, such as in asthma, providers rarely recoup their investment. For example, a hospital investing in a program for asthmatic children loses money if it is effective: Children are less likely to be hospitalized, and if they are, they stay fewer days.

Third, children rely disproportionately on state financing for their health care through Medicaid and SCHIP. States have been facing the worst budget crises in several decades, and rather than spending more on improving these programs, many are cutting costs by erecting additional barriers to enrollment or eligibility or both.¹⁸

Making sure translation and improvement reach the most vulnerable. U.S. children under age five have the highest poverty rate and are the most diverse population subgroup of all Americans.¹⁹ Therefore, the issue of health care disparities caused by sociodemographic factors is even more salient. We should not assume that improving our ability to translate research into practice would benefit different groups of children equally.

Indeed, we are learning that the introduction of new technologies and therapeutic interventions can actually increase disparities.²⁰ The gains that we have made in reducing infant mortality overall have not been shared by all equally. While the absolute rates of infant mortality have gone down for both white and black populations, the rate of decline is far greater for white babies, resulting in an increase in the infant mortality gap between whites and African Americans.

It is also not at all clear the extent to which a focus on promoting either translation or quality improvement will be successful at reducing disparities for children. Pediatric cancer care provides a case example of the former. Care for pediatric cancers is unique in that "every child treated is a child studied" through the Children’s Oncology Group (COG). A National Institutes of Health–supported clinical trials cooperative group of 238 member institutions, COG is devoted exclusively to childhood cancer research. Thus, care is informed by the very latest knowledge of therapeutic advances. While overall survival has improved dramatically, results are mixed as to whether outcome disparities between African American and white children have been eliminated.²¹

Also unclear is whether the quality improvement strategies that are being mounted across the country will effectively address disparities. Some recent studies suggest that quality improvement does reduce disparities, especially when targeted at dimensions of care that are under a provider’s direct control.²²

Recommendations

Top Salient Issues Recommendations Editor's Notes NOTES

 
The papers in this volume of Health Affairs are evidence that progress can and should be made. However, three strategies could serve to accelerate improvements in children’s health care.

Federal support. Federal support for the knowledge needed to accelerate translation in children’s health care should be increased. The establishment of the National Institutes of Health (NIH) roadmap initiative could help in promoting much-needed work on how to translate advances for specific conditions, populations, and settings.²³ However, as new initiatives are supported, it will be important to explicitly recognize that it is not just what is studied that needs to change, but how it is studied. Modifying the research process to engage users in the way recommended by Lomas (whether they be communities, providers, or policymakers) is resource-and time-intensive, and this needs to be factored into the costs of doing this type of research. Second, it is not at all clear to what extent these broad initiatives will naturally include an adequate focus on children. The NIH policy on including children in research needs to be strengthened by external accountability for progress that is detailed enough to demonstrate whether appropriate inclusion is occurring in discovery and translational research.²⁴ One mechanism would be through an annual report to Congress on the policy’s impact.

Knowledge brokers. Lomas and others have found that the translation process can be vastly improved in either clinical or policy settings through the use of knowledge brokers.²⁵ These individuals and organizations can serve as champions and intermediaries between researchers and users. Success with this type of approach was achieved more than fifty years ago with the Agricultural Extension program and the Epidemic Intelligence Service.²⁶ More recently the Agency for Healthcare Research and Quality (AHRQ) established, in partnership with the Department of Veterans Affairs (VA), a patient safety improvement corps.²⁷ The Department of Health and Human Services (HHS) should develop a child health improvement corps of experts in evidence-based practice, quality improvement, and research translation. This elite corps would be deployed to states and localities to work in partnership with private providers, health systems, and plans to improve children’s health care. This initiative should build on recent efforts to establish regional improvement partnerships in states that bring together state agencies, private payers, and provider communities.²⁸

Attention to the vulnerable. Translation for the most vulnerable children should be given a high priority. Although quality problems spare no child, the burden of illness falls disproportionately on a subset of children. Indeed, 20 percent of children continue to account for 80 percent of all health care spending on children.²⁹ In addition, the color of a child’s skin may be the best predictor of that child’s life expectancy.³⁰ Excellent health care has the potential to change that. We also know that for the most vulnerable, specific additional services and interventions may be needed to achieve outcomes equivalent to those for low-risk, upper-income white children.³¹ The data in the recently released National Healthcare Disparities Report as well as the just-published Commonwealth Fund’s Chartbook on Children’s Healthcare Quality serve as good starting points for setting priorities for translation.³²

Children depend on all of us for so much, and too often we fall short of meeting their needs. Perhaps in this one area—translating into practice and policy what we know works—we could make much progress quickly.

Editor's Notes

Top Salient Issues Recommendations Editor's Notes NOTES

 
Lisa Simpson (lsimpso1{at}hsc.usf.edu) is the All Children’s Hospital Guild Endowed Chair in Child Health Policy at the University of South Florida Department of Pediatrics and national director, Child Health Policy, of the National Initiative for Children’s Healthcare Quality.

This research was supported in part by the Pediatric Clinical Research Center of All Children’s Hospital and the University of South Florida; and the Maternal and Child Health Bureau, Health Resources and Services Administration, CFDA no. 93.110 PCRC. The author thanks Steve Freedman, Carolyn Clancy, Denise Dougherty, and Charlie Homer for their helpful comments on an earlier draft.

NOTES

Top Salient Issues Recommendations Editor's Notes NOTES

 

1. See D.P. Gitterman et al., "Did a Rising Tide Lift All Boats? The NIH Budget and Pediatric Research Portfolio," Health Affairs 23, no. 5 (2004):113–124.[Abstract/Free Full Text]
2. Institute of Medicine, Crossing the Quality Chasm: A New Health System for the Twenty-first Century (Washington: National Academies Press, March 2001); and IOM, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (Washington: National Academies Press, 2003).
3. M.A. Schuster et al., "Development of a Quality of Care Measurement System for Children and Adolescents," Archives of Pediatrics and Adolescent Medicine 151, no. 11 (1997): 1085–1092.[Abstract/Free Full Text]
4. C.B. Forrest, L.A. Simpson, and C.M. Clancy, "Child Health Services Research: Challenges and Opportunities," Journal of the American Medical Association 277, no. 22 (1997): 1787–1793.[Abstract/Free Full Text]
5. L.A. Bero et al., "Closing the Gap between Research and Practice: An Overview of Systematic Reviews of Interventions to Promote the Implementation of Research Findings," British Medical Journal 317, no. 7156 (1998): 465–468[Free Full Text]; and C. Clancy and L. Simpson, "Looking Forward to Impact: Moving beyond Serendipity," Health Services Research 37, no. 4 (2002): xiv–xxiii.[CrossRef][Web of Science][Medline]
6. E.M. Rogers, Diffusion of Innovations, 5th ed. (New York: Free Press, 2003).
7. National Committee for Quality Assurance, The State of Managed Care Quality: 2003 (Washington: NCQA, 2003); and J.G. Donahue et al., "Asthma Pharmacotherapy and Utilization by Children in Three Managed Care Organizations: The Pediatric Asthma Care Patient Outcomes Research Team," Journal of Allergy and Clinical Immunology 106, no. 6 (2000): 1108–1114.[CrossRef][Web of Science][Medline]
8. Agency for Healthcare Research and Quality, "AHRQ Awards Thirteen Grants for Translating Research into Practice II," 19 October 2000, www.ahrq.gov/news/press/pr2000/tripawpr.htm (4 June 2004).
9. R.N. Shiffman et al., "Information Technology for Children’s Health and Health Care: Report on the Information Technology in Children’s Health Care Expert Meeting, September 21–22, 2000," Journal of the American Medical Informatics Association 8, no. 6 (2001): 546–551.[Abstract/Free Full Text]
10. Rewarding Results: Aligning Incentives with High-Quality Health Care, www.leapfroggroup.org/RewardingResults/index.htm (29 July 2004).
11. J. Lomas, "Using ‘Linkage and Exchange’ to Move Research into Policy at a Canadian Foundation," Health Affairs 19, no. 3 (2000): 236–240[CrossRef][Medline]; and J. Lomas, "Diffusion, Dissemination, and Implementation: Who Should Do What?" Annals of the New York Academy of Sciences 703 (1993): 226–235.[Web of Science][Medline]
12. The Child Health Insurance Research Initiative, sponsored by AHRQ, the David and Lucile Packard Foundation, and the Health Resources and Services Administration, was launched in 1999 to study the impact of the implementation of SCHIP. See "Child Health Insurance Research Initiative (CHIRI)," AHRQ Fact Sheet, May 2003, www.ahrq.gov/chiri (4 June 2004).
13. I. Fraser et al., "Putting Practice into Research," Health Services Research 37, no. 1 (2002): xiii–xxvi.[Web of Science][Medline]
14. C.K. Kane and H. Loeblich, "Physician Income: The Decade in Review," in American Medical Association, Physician Socioeconomic Statistics (Chicago: AMA, 2003).
15. K.B. Johnson and C.L. Davison, "Information Technology: Its Importance to Child Safety," Ambulatory Pediatrics 4, no. 1 (2004): 64–72[CrossRef][Web of Science][Medline]; and R. Kaushal et al., "Pediatric Medication Errors: What Do We Know? What Gaps Remain?" Ambulatory Pediatrics 4, no. 1 (2004): 73–81.[CrossRef][Web of Science][Medline]
16. HL7 is "one of several ANSI-accredited Standards Developing Organizations (SDOs) operating in the healthcare arena." Its domain is "clinical and administrative data." From the HL7 Web site, www.hl7.org (19 May 2004).
17. Child Health Business Case Working Group, "Exploring the Business Case for Improving the Quality of Health Care for Children," Health Affairs 23, no. 4 (2004): 159–166.[Abstract/Free Full Text]
18. State Coverage Initiatives, State of the States: Cultivating Hope in Rough Terrain (Washington: AcademyHealth, January 2004).
19. U.S. Census Bureau, Current Population Survey, "Historical Poverty Tables," www.census.gov/hhes/poverty/histpov/hstpov3.html (7 July 2004).
20. P.H. Wise, "The Anatomy of a Disparity in Infant Mortality," Annual Review of Public Health 24 (2003): 341–362[CrossRef][Web of Science][Medline]; and H. Burstin, "Traversing the Digital Divide," Health Affairs 19, no. 6 (2000): 245–249.
21. C.H. Pui et al., "Results of Therapy for Acute Lymphoblastic Leukemia in Black and White Children," Journal of the American Medical Association 290, no. 15 (2003): 2001–2007[Abstract/Free Full Text]; N.S. Kadan-Lottick et al., "Survival Variability by Race and Ethnicity in Childhood Acute Lymphoblastic Leukemia," Journal of the American Medical Association 290, no. 15 (2003): 2008–2014[Abstract/Free Full Text]; and W.L. Carroll, "Race and Outcome in Childhood Acute Lymphoblastic Leukemia," Journal of the American Medical Association 290, no. 15 (2003): 2061–2063.[Free Full Text]
22. A.R. Sehgal, "Impact Of Quality Improvement Efforts on Race and Sex Disparities in Hemodialysis," Journal of the American Medical Association 289, no. 8 (2003): 996–1000.[Abstract/Free Full Text]
23. F. Mullan, "Twenty-seven Fingers without a Palm Is Not a Hand: A Conversation with Elias Zerhouni," Health Affairs, 8 January 2004, content.healthaffairs.org/cgi/content/abstract/hlthaff.w4.1 (4 June 2004).
24. Gitterman et al., "Did a Rising Tide Lift All Boats?"
25. J. Lomas, "Health Services Research," British Medical Journal 327, no 7427 (2003): 1301–1302[Free Full Text]; J.N. Lavis et al., "How Can Research Organizations More Effectively Transfer Research Knowledge to Decision Makers?" Milbank Quarterly 81, no. 2 (2003): 221–248; S. Ross et al., "Partnership Experiences: Involving Decision-Makers in the Research Process," Journal of Health Services Research and Policy 8, Supp. 2 (2003): 26–34; and P. Dash, N. Gowman, and M. Traynor, "Increasing the Impact of Health Services Research," British Medical Journal 327, no. 7427 (2003): 1339–1341.[Free Full Text]
26. Rogers, Diffusion of Innovations; and U.S. Centers for Disease Control and Prevention, "Epidemic Intelligence Service," www.cdc.gov/eis/about/factsheet.htm (4 June 2004).
27. AHRQ, "HHS, VA Launch Patient Safety Training Program," 16 September 2003, www.ahrq.gov/news/press/pr2003/psicpr.htm (4 June 2004).
28. The National Initiative for Children’s Healthcare Quality has fostered the development of regional improvement partnerships in Vermont, North Carolina, and Utah. For information on Vermont’s program, see www.med.uvm.edu/vchip/HP-DEPT.ASP?SiteAreaID=513 (4 June 2004). These public-private partnerships use quality measurement and improvement strategies to help clinicians and others improve child health care.
29. A. Elixhauser et al., "Health Care for Children and Youth in the United States: Annual Report on Access, Utilization, Quality, and Expenditures," Ambulatory Pediatrics 2, no. 6 (2002): 419–437.[CrossRef][Web of Science][Medline]
30. D. Berwick, "Crossing the Quality Chasm for Children" (Speech at the Third Annual Forum of the National Initiative for Children’s Healthcare Quality, San Diego, California, March 2004).
31. J.M. Thompson et al., "Quality of Care for Children in Commercial and Medicaid Managed Care," Journal of the American Medical Association 290, no. 11 (2003): 1486–1493[Abstract/Free Full Text]; and L. Simpson, C. Korenbrot, and J. Greene, "Outcomes of Enhanced Prenatal Services for Medicaid-Eligible Women in Public and Private Settings," Public Health Reports 112, no. 2 (1997): 122–132.[Web of Science][Medline]
32. AHRQ, National Healthcare Disparities Report, July 2003, www.qualitytools.ahrq.gov/disparitiesreport/download_report.aspx (8 July 2004); and S. Leatherman and D. McCarthy, Quality of Health Care for Children and Adolescents: A Chartbook (New York: Commonwealth Fund, April 2004).

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