Key points

Introduction

Despite consensus among pediatricians about the importance of monitoring development in primary care, effective developmental screening and subsequent intervention remains challenging. Developmental delay affects greater than 10% of pediatric patients and nearly 50% of children fail to receive appropriate screening despite relative inexpensive cost and low difficulty. Developmental delays require a medical evaluation that may include chromosomal analysis, MRI, and laboratory studies, as well as subspecialty medical and allied health evaluation.

The electronic health record (EHR) provides an opportunity for prompt, consistent developmental assessment with clear, actionable protocols for intervention and follow-up, as well as tracking, to ensure practice improvement. Providers recognize the growing impact of EHR, positive and negative, on clinical care and professional organizations attempt to support their members in creating efficient and efficacious systems. For example, the American Academy of Pediatrics (AAP) identifies the importance of health information technology in clinical care by setting the following priorities: (1) appropriate management and tracking of health data and services, (2) effective transfer of health information in patient care transitions, and (3) review of clinical data in continuous quality improvement.

This article begins by defining developmental screening and surveillance. The next section introduces and applies the principles of interoperability and privacy to such evaluation in the EHR. Following, the current and future applications of tools, such as clinical decision support, registries, patient portals, and mobile technology is discussed. A conceptual framework summarizes the application of EHR tools. The conclusion reviews obstacles to implementation and future prospects. A glossary at the end of the article defines key terms and concepts from clinical informatics. Published literature on EHR and developmental screening and surveillance is limited, but representative articles are listed in Box 1 .

Introduction

Despite consensus among pediatricians about the importance of monitoring development in primary care, effective developmental screening and subsequent intervention remains challenging. Developmental delay affects greater than 10% of pediatric patients and nearly 50% of children fail to receive appropriate screening despite relative inexpensive cost and low difficulty. Developmental delays require a medical evaluation that may include chromosomal analysis, MRI, and laboratory studies, as well as subspecialty medical and allied health evaluation.

The electronic health record (EHR) provides an opportunity for prompt, consistent developmental assessment with clear, actionable protocols for intervention and follow-up, as well as tracking, to ensure practice improvement. Providers recognize the growing impact of EHR, positive and negative, on clinical care and professional organizations attempt to support their members in creating efficient and efficacious systems. For example, the American Academy of Pediatrics (AAP) identifies the importance of health information technology in clinical care by setting the following priorities: (1) appropriate management and tracking of health data and services, (2) effective transfer of health information in patient care transitions, and (3) review of clinical data in continuous quality improvement.

This article begins by defining developmental screening and surveillance. The next section introduces and applies the principles of interoperability and privacy to such evaluation in the EHR. Following, the current and future applications of tools, such as clinical decision support, registries, patient portals, and mobile technology is discussed. A conceptual framework summarizes the application of EHR tools. The conclusion reviews obstacles to implementation and future prospects. A glossary at the end of the article defines key terms and concepts from clinical informatics. Published literature on EHR and developmental screening and surveillance is limited, but representative articles are listed in Box 1 .

Developmental surveillance and screening

Developmental surveillance addresses parental concerns and uses knowledgeable observation by a skilled practitioner to identify developmental problems. The AAP states that appropriate developmental surveillance represents a “flexible, longitudinal, continuous, and cumulative process.” Bright Futures and AAP recommend developmental surveillance at all routine child health visits, also called well-child visits.

In contrast, developmental screening involves use of a validated, standardized tool to identify and characterize risk. The Council on Children with Disabilities identifies 20 developmental screening tools with appropriate validation, although this list is not exhaustive. Selection of an appropriate screening tool is challenging and often involves consideration of the following: the scope of developmental domains (gross-motor, fine-motor, social, language, and problem-solving) to be screened, scoring, other administrative needs, qualification for reimbursement by payers, and cost of tools.

Interoperability

Developmental issues require multidisciplinary collaboration and hinges on record systems sharing appropriate information. Interoperability, the ability of 2 or more systems to exchange and use information, is regularly discussed yet remains elusive in EHR systems. To achieve interoperability, common terminology must be determined, data must be efficiently collected, and information must be shared between institutions.

Common language is crucial to communication between independent systems. Data standards allow organizations to share information. Standardized screening tools and consistent coding allows sharing of pooled data and ensures consistent documentation across institutions. Systemized Nomenclature of Medicine clinical terms (SNOMED-CT) represents a national effort to create consistent terminology in medical records. Pertinent data include diagnoses, screening outcomes, and interventions. Although screening tools may differ between institutions, common measures should be prioritized. Coding for a diagnosis and annotation for developmental delay or failed developmental screens in the problem list are appropriate targets.

Many challenges exist for tracking interventions for developmental screening and surveillance in primary care, but additional complexity emerges in linking medical specialists and other health providers, such as occupational and speech therapists, to pertinent information. Jensen and colleagues evaluated developmental screening at 6 health care organizations and found that only one noted referral completion in the electronic medical record (EMR) and that institution did not capture this information in discrete data.

In addition, privacy and technical limitations have limited information exchange. Release of health information is guided by opt-in versus opt-out consent policies. Traditionally, the Health Information Portability and Accountability Act (HIPAA) has directed most practices to opt-in policies that require expressed permission to release pertinent health records, whereas developments in the EHR, such as summary of care, have moved some institutions to use opt-out policies that allow more robust communication between primary care and specialty providers. With direction by professional organizations such as AAP and American Academy of Family Physicians, standard care summaries for developmental delays should be created and shared across different EHR vendor platforms.

These transition documents are important to meaningful use and the patient-centered medical home. Furthermore, these resources are moving toward push, rather than pull, modalities. For pull requests, an outside system specifically requests information, whereas push information is sent automatically from one facility to another. Pushing pertinent information to specialty providers from referring or primary care providers and vice versa improves communication critical to patient care.

Tools exist to connect data sets, although these tools are limited between distinct institutions and EHR vendors. Korzeniewski and colleagues used Centers for Disease Control and Prevention (CDC) software to merge 2 institutional data sets to identify children who failed to receive a newborn screen and examine the reasons for failure. One can imagine the benefit of shared information between health and educational institutions on development. Health providers could provide schools with medical diagnoses and screenings and anticipated educational deficits. At the same time, schools could communicate in place of describe provided services, such as speech, physical, and occupational therapy, as well as progress and pitfalls in attainment. Bidirectional communication using EHRs, health information exchanges (HIEs), and registries is critical to safe, efficient, and efficacious multidisciplinary care.

HIEs remain critical for patient-centered care across practice settings, but their implementation has lagged behind other elements of meaningful use. Exchanges have grown at the local, state, regional, and national levels with public and private funding since passage of the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009. Barriers for successful implementation of HIE are broad but can be categorized into incomplete information, access to exchanges, and organization of data.

The Health Information Portability and Accountability Act

Most providers have been exposed to data security protections via HIPAA. This legislation formalized information security in medical records and is guided by the 3 core principles of information security: confidentiality, availability, and integrity. Familiar to patients and providers, confidentiality prevents data loss and inappropriate sharing with organizations or individuals. EHR systems have improved availability of medical records to patients and providers, although numerous contingencies, including weather, network failures, and hardware issues, must be considered. Patient portals have provided greater access to personal health records via the patient’s home computer or smartphone. Ensuring that families have access to their own health data is countered by the need to contextualize this information with appropriate resources from reliable sources such as the CDC and AAP. Data integrity ensures that health information is protected against modification from unauthorized entities and protected against loss or corruption. Regional and national registries for developmental data could complement institutional efforts in data back-up and best practices. Consequences for cognitive functioning, functional abilities, and medical or social needs make security for developmental data particularly important. Indeed, data security remains a persistent issue with greater than 1.8 million medical-related breaches in 2013 in the United States.