January 2009, VOLUME123 /ISSUE Supplement 2

It Is Time! Accelerating the Use of Child Health Information Systems to Improve Child Health

  1. Gerry Fairbrother, PhD,
  2. Lisa A. Simpson, MB, BCh, MPH, FAAP
  1. Child Policy Research Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio


Articles in this issue show clearly the enormous impact that the use of health information technology can have on the quality of health care for children. However, they also point out the challenges that need to be overcome to realize fully the potential of health information technology to improve the quality and efficiency of health care.

  • children
  • health information technology
  • electronic health record
  • policy

We have all heard it many times, that the information revolution is here. Unfortunately, we also know that the health care industry lags behind all others in its embrace of the vast potential of information systems to improve productivity, quality, and efficiency. This is especially the case for children's health. It is time, and in many ways past time, to exploit more fully the potential for health information systems to improve child and adolescent health and health care. Articles in this issue show clearly the enormous impact that the use of health information technology (HIT) can have on the quality of health care for children. However, they also point out the challenges that need to be overcome to realize fully the potential of HIT to improve the quality and efficiency of health care more broadly.

HIT as a vehicle for improvement in child health care is the central theme for this issue. Paul Miles starts off the discussion with the assertion that US health care is engaged in a second quality revolution, even more profound than the Flexner revolution 100 years ago. Momentum for the revolution comes from the many reports documenting the variations in health care and particularly the landmark studies showing widespread substandard care for both adults and children; adults receive appropriate care only one half the time, and children receive it even less often.1,2 As Miles points out, those studies make it clear that the quality problem is not an issue of a few poorly performing physicians but rather a significant gap between the performance of the majority of physicians and optimal care. This is the context for the quality revolution and the context for the role of HIT in improvement.


Attention to the role of HIT in child health care has existed for some time but long was limited to a narrow group of technical experts. Beginning in 2001, when the Agency for Healthcare Research and Quality convened an expert meeting on HIT in children's health, a series of activities have occurred and have resulted in position statements and conferences summarizing the progress we are making in the development of child health information systems. The latest of these efforts, and the focus of this supplement, was a conference held in March 2006 in Orlando, Florida. The conference was cosponsored by the Agency for Healthcare Research and Quality, the National Initiative for Children's Healthcare Quality, the Public Health Informatics Institute, and the All Children's Hospital Foundation. A number of articles were commissioned as part of that work and they are included here, with other invited articles. The articles were presented in draft form at the conference, engendered a rich discussion, and were revised for this supplement.


Much of the policy attention today is on the use of electronic health records (EHRs); however, several articles in this supplement speak to the slow spread among child health providers. Numerous barriers to spread, notably cost and the lack of appropriateness for pediatrics of the available products, account for this. Several articles in this issue also reflect the fact that child health information systems mirror the patchwork system that is child health care. Depending on the setting, information relevant to the care of children is housed in electronic medical records (EMRs), personal health records, registries, newborn screening programs and other public health data sets, and school-based records.


Authors in this issue describe important applications that already are improving the care of patients in practices. Ferris and colleagues, for example, describe an electronic results management system for tracking and managing laboratory results in pediatric practices. Rattay and colleagues describe the use of an EMR system to support primary care recommendations to prevent, to identify, and to manage childhood obesity. The system has the ability to calculate BMI values, to issue alerts, to provide guidance to families, and to assess families' readiness to change behavior.

Other uses of HIT described in this issue also signal that “it is time.” Hinman and Davidson describe a variety of health information systems for children, including immunization information systems and emergency medical services systems such as trauma registries and motor vehicle crash databases that are used for public health or clinical tracking. Immunization information systems are especially important for public health monitoring and surveillance; the American Academy of Pediatrics, in a policy statement, endorsed the development and implementation of such systems.3 These exist in most states and usually contain information on the immunizations delivered in the public sector, although most are less complete for coverage in the private sector. HIT also has become an integral part of professional development, as Miles and colleagues describe, including maintenance of board certification, maintenance of state licensure, and medical credentialing. Similarly, the federal government (Department of Health and Human Services) recently undertook a Personalized Health Care Initiative, which supports the transmission of basic scientific research about the molecular and genetic “fingerprints” of disease predisposition and progression through health care information exchange to improve patient care, as described in the article by Brinner and Downing.

Finally, Menachemi and colleagues present some intriguing data showing that the current trend of linking payment to performance may facilitate the adoption of EHRs but only if programs are narrowly targeted to provide direct incentives for using EHRs and other HIT applications. Interestingly, indirect incentives, such as those linked to quality of performance, were not associated with increased adoption.


The infrastructure challenges we continue to face to support functional child health information systems are numerous. Fortunately, the articles in this issue show that attention is being focused on many of these challenges and progress for children seems more likely now than it has for many years in the past. This infrastructure has several components, including not only the technical infrastructure but also the legal and sociopolitical infrastructure of groups and organizations.

Spooner and Classen describe the evolving technical infrastructure needed to integrate systems and to coordinate data standards, as well as the numerous organizations working on expanding theses standards. The authors describe 3 types of data standards that are pertinent, namely, standards for terminology, standards for messaging, and functional standards (ie, how a system is to operate in the clinical environment), and the current attempts to involve child health professionals in the formal standards design process. The emergence of regional health information organizations and health information exchanges to facilitate oversight and sharing of information within given geographical boundaries is part of the evolving technical infrastructure.

Rosenbaum and colleagues describe the evolving legal framework, as lawmakers, regulators, and policymakers seek to apply the existing, well-developed body of law regarding health information privacy to the new HIT environment. For example, as the authors point out, large proportions of privacy rights, health care, and medical practice law are state-based. However, as the need increases for electronic information about health and health care to cross state lines, the need for adaptations in the current state-based law arises. Furthermore, the issue of health information privacy takes on an added dimension when children are involved. Controversies over children's legal right to control health information have already emerged, regarding both the existence of any right and state-to-state variations in rights. Rosenbaum and colleagues describe the issues and the current state of this evolving legal framework to support HIT.

Miles and colleagues describe an important aspect of the sociopolitical infrastructure, namely, the Alliance for Pediatric Quality, whose goal is to create a community of practices to improve health care for children. The alliance includes the American Academy of Pediatrics, the American Board of Pediatrics, the Child Health Corporation of America, and the National Association of Children's Hospitals and Related Institutions, which together represent >60000 pediatricians and pediatric medical and surgical specialists and >200 children's hospitals. The alliance works with the pediatric HIT community to seed the adoption of pediatric data standards and to define data collection and reporting systems that will work for both quality improvement and EHR systems.


Despite the promise of information technology to improve quality and efficiency in care and despite the goal of an EMR for every US patient by 2014, adoption of EMRs has been slow; it has been described as “the wave that never breaks.”4 In this issue, Hinman and Davidson point out that <20% of physicians throughout the nation were using EMRs as of 2003. As might be expected, adoption rates varied according to the size of the practice (larger being more likely to adopt) and the specialty and age of the physician (younger being more likely to adopt). On the hospital side, Menachemi and colleagues report that only 49% of children's hospitals have EHRs and only 36% use clinical decision support. Most children's hospitals do have stand-alone clinical scheduling, transcription, and pharmacy and laboratory information systems but not fully integrated EHRs. This slow pace led some experts to predict that it will take until 2024 to see widespread adoption, a full 10 years beyond the target.5

Why have practices and hospitals been slow to adopt? Funding is certainly one challenge, in that these systems are expensive. Furthermore, efficiencies and cost savings that could offset the initial cost outlay often accrue to the buyers of health care and not the providers, which reduces the incentive for frontline providers to invest in HIT.6 Another challenge is the lack of interoperability. The fact that systems “don't talk to each other” is a major impediment to realizing the full potential. In this context, the findings by Ferris and colleagues are significant. The laboratory tracking and management system brought practice-level gains in efficiency, reliability, timeliness, and provider satisfaction, but only if the management system could link with all laboratories. Importantly, practices that could link with some but not all of their laboratories actually reported decreased efficiency and increased risk of lost test results. Ferris and colleagues concluded that partial adoption not only might decrease efficiency but also might pose a threat to patient safety. Many of the important applications described in this issue and elsewhere are stand-alone systems (eg, hospital laboratory, scheduling, and transcription systems and immunization registries in many states) that cannot be integrated into practice without a fully functioning EMR.

Despite challenges, the EHR is the bedrock on which quality improvement applications rest. Merely having an EHR, in and of itself, does not lead inevitably to quality improvement. Rather, HIT implementation needs to be designed around specific improvement projects if we are to expect it to improve care, with financial incentives aligned with improvement.7 Unintended consequences and undesired outcomes are likely to flow from an implementation that is not performed carefully and with quality improvement as its centerpiece. These undesired outcomes may include more work for physicians, new types of errors, and decreases in vital interactions among care providers, ancillary services, and units.8 Implementation of HIT needs to be combined with quality improvement methods to achieve the best results. We clearly have much to learn about the most effective EHRs and other HIT implementation strategies. Research and demonstrations with robust evaluations will be critical in the future.


Through many of the efforts described in this supplement, policymakers are learning that, as with other issues with children and adolescents, it cannot be assumed that an adult solution will work. Specific attention to children's needs is warranted. This imperative was recognized in the recent bill passed by Congress that reauthorizes the State Children's Health Insurance Program. This bill (which is not law, because it has been vetoed twice by President George W. Bush) establishes a broad quality initiative with earmarked funding that contains a specific focus on 2 key aspects of child health information systems, that is, (1) developing a model pediatric EHR and (2) funding demonstrations to assess the impact of EHRs and HIT in the care of children. There are many unanswered questions regarding the ultimate value of HIT in improving the quality, outcomes, and efficiency of pediatric services, which additional research and scholarship could answer.


Organized pediatrics have clearly recognized that it is time to engage forcefully in advancing child health information systems. Clearly articulating the needs of children and child health providers will continue to be critical in the presence of growing national initiatives and investments. Individual practitioners need to recognize that the future is here, with the need to integrate child health information systems into their practices to benefit children. Practitioners will need to be supported to rise to this challenge.


This work was supported in part by the Cincinnati Children's Hospital Research Foundation and in part by a grant from the All Children's Hospital Research Foundation.

We thank Pamela Schoettker for her assistance in reading the articles, helping to develop the key themes, and providing additional editorial assistance for all supplement authors.


    • Accepted September 11, 2008.
  • Address correspondence to Lisa Simpson, MB, BCh, MPH, FAAP, Child Policy Research Center, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave, MLC 7014, Cincinnati, OH 45229-3039. E-mail: lisa.simpson{at}
  • The authors have indicated they have no financial relationships relevant to this article to disclose.

HIT—health information technologyEHR—electronic health recordEMR—electronic medical record