Content Barriers to Pediatric Uptake of Electronic Health Records

Advances in Pediatrics 59 (2012) 159–181

ADVANCES IN PEDIATRICS Content Barriers to Pediatric Uptake of Electronic Health Records Delaney Gracy, MD, MPHa,*, Jeb Weisman, PhDa, Roy Grant, MAa, Jennifer Pruitta, Arturo Brito, MD, MPHb a

Children’s Health Fund, 215 West 125th Street, New York, NY 10027, USA; bColumbia University, Mailman School of Public Health, New York, NY, USA

Keywords Electronic health record Medical informatics Information storage and retrieval Pediatrics Key Points Despite the accelerating acceptance and use of electronic health record (EHR) technology, available EHR systems generally do not adequately reflect the needs of children and pediatric health care providers. The health care needs of children require specific EHR content, eg, units of measurement for age and medication dosing, notations for parents/caregiver information, collateral contacts mental health issues. There are important issues in EHR use that are still unresolved, e.g., confidentiality of adolescent health records when information is shared electronically or provided to parents/caregivers.

INTRODUCTION The adoption of electronic health record (EHR)a systems has accelerated since 2009.b Many factors have contributed to this accelerated pace, most notably federal mandates including the Health Information Technology for Economic and Clinical Health Act (HITECH), a provision of the American Recovery a The term EHR represents a class of clinical record-keeping tools including electronic medical records and electronic patient records. The authors use the term EHR to represent all these tools because it best captures the broadly defined realms of care reflected in the application of health information technology (HIT) to the notions of patient-centered medical or health home and the broad responsibilities of pediatric practitioners. b Although an increase in EHR uptake over time is difficult to dispute, the nature and quality of the suggested increases is unclear. It is possible that uptake of EHR technology is only partial, limited by the technical capabilities of products. See, for example: http://www.fiercehealthit.com/story/cdc-data-ehr-adoption-overlooks-inconvenientfacts/2011-12-04?utm_medium¼nl&utm_source¼internal (accessed 12/5/2011).

*Corresponding author. E-mail address: [email protected] 0065-3101/12/$ – see front matter doi:10.1016/j.yapd.2012.04.004

Ó 2012 Elsevier Inc. All rights reserved.

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and Reinvestment Act (ARRA); the Centers for Medicaid and Medicare Services (CMS); and the Child Health Insurance Program Reauthorization Act (CHIPRA) of 2009 [1–3]. There has been a continual maturing of health information technology (HIT), spurred on by, among other forces, financial incentives including funding through ARRA/HITECH [4] and revenue enhancements from insurers. In 2011, the American Board of Medical Specialties approved a certification for clinical informatics, which is expected to further the adoption of EHRs [5]. A November 2011 report from IDC Health Insights projected that, by 2016, more than 80% of health care providers will be using an EHR [6]. The transition from paper charts to EHRs has faced difficulties. Issues have included cost of equipment, provider comfort with technology, lost productivity during the transition, availability of technical support and peripheral equipment, limited interoperability among EHR systems, and the degree to which the technology fits the clinical activities in the practice. There have been ongoing concerns about patient privacy and the security of electronically stored data, with special considerations for children and adolescents. Many current EHRs have limited ability to provide useful clinical decision support (through prompts, reminders, warnings if an action is contraindicated), order and track laboratory tests, and electronically communicate prescriptions to pharmacies (e-prescribing or eRx), particularly in nontraditional clinical environments. There may be transcription errors when importing information, including demographic data, from paper charts to an electronic system [7–12]. Cost had been a particular issue for individual or small group practices before 2009 [13]. Subsequently, funding available through ARRA/HITECH and private insurers may offset the cost of investment in HIT with the expectation of a significant savings over time for the practice and for the health care system overall [14]. Although the issue of funding has been ameliorated for many potential users, there remain additional challenges in designing EHRs for pediatrics. Most current EHRs are not suitable for use with children and require child-specific adaptation to be functional in a general pediatric practice. This requirement makes it more difficult for pediatricians and other pediatric providers to provide optimal quality of care to their patients [15]. The adoption of HIT in general pediatrics has lagged behind other medical fields, including family practice and pediatric subspecialties [16]. HIT use is especially low among health care providers caring for medically underserved minority communities. These same patient populations, in which health disparities are greatest, could potentially benefit most from the integration of innovative technologies into health care services [17,18]. In 2005, only 1 primary care pediatrician in 5 (21.3%) used an EHR [19]. Before the passage of ARRA/HITECH in 2009, there were incremental gains made in EHR adoption, but many systems in use lacked important functional elements [20]. In 2009, based on responses to an American Academy of Pediatrics Periodic Survey, 41% of pediatricians reported using an EHR, but most of these systems were neither fully functional nor pediatric specific [21].

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This article argues that, despite the accelerating adoption of EHR technologies, available systems do not adequately reflect the needs of pediatric primary care providers and their patients. It discusses historical reasons for this, reviews the special requirements for EHR design to meet pediatric needs, provides sample cases in which EHR technology improves or hinders care, and offers a set of recommendations and considerations for current systems and suggestions for future action. The observations and conclusions in this article are based on HIT work performed and supported by Children’s Health Fund (CHF) and its national network of clinical programs from 1988 to 2011. This work included the development and/or modification of 4 generations of pediatric-focused EHRs and HIT implementation at national academic medical centers and Federally Qualified Health Center (FQHC) pediatric programs. The patient populations for whom the systems were developed are located in urban and rural communities in the United States that are federally designated Health Professional Shortage Areas with high rates of poverty and multiple barriers to health care access. Pediatric patients ranged from 0 to 24 years of age. All enrolled patients received care considered to be consistent with CHF’s enhanced medical home model [18]. The development of the EHR system (technology and content) prioritized quality, breadth and depth of care, usability, and unique needs of the target populations being served. Clinics’ facilities include primary care fixed-site clinics, mobile medical units, and public health postdisaster crisis environments [22]. Content focus, development, and usability work is based in ongoing analysis of 330,000 anonymous, unduplicated patients and their associated encounter notes and visit summary records. A BRIEF HISTORY OF EHRS The modern notion of an EHR for use in medical practices may be traced back to Vannevar Bush’s [23] seminal 1945 publication of cybernetics, As We May Think. The first scholarly treatments of electronic health care records date to the early 1960s [24]. It was several decades before a range of commercially developed comprehensive ambulatory care EHRs entered the market (eg, Healthmatics, EPIC, PenChart in the 1990s), and some years before there would be substantial growth in their use. In April 2004, President George Bush signed executive order 13335 to establish a Nationwide Health Information Infrastructure and accompanying Nationwide Health Information Network and the Office of the National Coordinator for Health Information Technology (ONCHIT) to coordinate national efforts to implement HITs and information exchanges [25]. This emphasis on health information infrastructure development reflected a belief in the value of the technology to improve patient care and reduce costs.c It has been estimated c

Cost reductions were expected to come from reduction of medical errors [http://www.bos.frb.org/ economic/conf/conf50/conf50i.pdf; whereas the Government Accountability Office (GAO) identified other opportunities [http://www.gao.gov/new.items/d05309r.pdf].

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that broad use of EHRs and other HITs could reduce annual national health care expenditures by as much as $81 billion while improving the quality and safety of patient health care [26]. A 2006 systematic review of studies documenting the impact of EHR use on clinical care found 3 principal areas of improvement: increased delivery of best-practice, guideline-based care; improved surveillance and tracking; and fewer medication errors [27]. The potential of EHRs to improve care coordination, a key feature of the patient-centered medical home, was also highlighted [28]. In addition to the financial incentives associated with ARRA/HITECH, federally defined requirements have also contributed to greater EHR use. Most providers receiving Medicare and Medicaid payment for services are expected to meet a series of benchmarks to show the acquisition and meaningful use of HIT systems. The key features of meaningful use, as defined by the CMS, are use ‘‘in a meaningful manner, such as e-prescribing,’’ use for ‘‘electronic exchange of health information to improve quality of health care,’’ and use that shows outcomes through clinical quality measures [29]. Currently, the Meaningful Use stage I criteria are in place. Negotiations and discussions are underway to formalize Meaningful Use stage II and stage III [30–32]. Although providers in general must show that at least 30% of their patient volume receives Medicaid and Medicare benefits, the threshold for pediatricians is set at 20%. THE STATUS OF CURRENT EHRS FOR USE IN PEDIATRIC PRACTICE The development of EHRs reflects efforts to maximize usability in general clinical practice as well as commercial considerations. Typically, EHR hardware and software are commercial products developed by vendors, with data elements that reflect the medical service needs of inpatient or ambulatory adult and subspecialty patients [33], which reflects the higher proportion of health care encounters and expenditures in these sectors compared with general pediatrics [34] and has contributed to a poor fit between the design elements of an off-the-shelf EHR product and the needs of child health care providers. Stage 1 Meaningful Use measures reflect adult health care needs for the most part, with pediatrics inadequately represented. If this holds true for subsequent stages, this could further influence EHR development away from the necessary adaptation of the technology to meet child health care needs [35]. Issues around the design of EHRs that would accommodate practicing pediatricians and other child health care providers have been discussed at least since the early 1990s. It was proposed then that the EHR permit a combination at the provider’s discretion of practice-specific, free-text notation and coded data entry, with the latter being sufficiently consistent and detailed to allow automated reporting to support tracking of clinical outcomes and clinical research [36]. More than 15 years later, it remains a challenge to find a fully


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functional EHR for primary care pediatric use that can reliably generate clinical data reports for outcome tracking, the medical home model of care, continuous quality improvement (CQI), and research. This is in part because the practice of pediatrics intertwines multiple facets of health care. From an HIT and EHR perspective, this broad constellation of domains requires an organizationally and operationally different approach to system design than many other fields of medicine. As if to underscore this point, the Agency for Health care Quality and Research (AHRQ) and CMS awarded a grant in 2010 for the design of a model pediatric EHR format to improve the quality and cost of services, something that they have not done for any other field of medicine [37]. The complexity of pediatric EHR development is further underscored by the comprehensive nature of the medical or health home model, which originated more than 40 years ago in pediatrics [38]. The American Academy of Pediatrics (AAP), a proponent of the model, has formally recognized the complexities of designing pediatric-specific content for EHRs and the importance of HIT as part of the pediatric medical home [39,40]. In practice, EHRs contribute to the transition of primary care practices into medical/health homes through their ability to facilitate storage of patientderived health information. This storage improves patient-centered practice, improves comprehensive and coordinated care by facilitating communication among providers in diverse settings and across transitions from one setting to another, and also improves patient self-management by facilitating information sharing with patients or parents of pediatric patients [41]. Despite the challenges in developing child-specific EHRs, there is already evidence that they can improve the quality of pediatric care:

The use of EHRs can improve the frequency with which pediatric primary care providers use the National Heart, Lung and Blood Institute (NHLBI) best-practice asthma guidelines in managing this highly prevalent ambulatory care sensitive condition in their practices [42,43] Prompts built into EHR platforms have been shown to contribute to higher immunization rates and fewer missed opportunities [44] Integrating pediatric growth charts into EHRs has enormous potential because of the functionality of the electronic platform to perform calculations such as percentiles for height/weight and head circumference, representing a major improvement compared with paper charting for tracking infant growth and managing high-risk pediatric patients in primary care [45] With modifications to the standard EHR and a quality improvement approach, the technology has contributed to better primary care prevention, identification, and management of pediatric obesity [46] EHR technology has been used to improve assessment of symptoms at well-care visits for children diagnosed with attention deficit disorder [47] EHR technology has been credited with improving the overall quality of care to children in urban primary care settings, including through pediatrician consistency in providing counseling and anticipatory guidance around health care maintenance issues including diet and sleep, and addressing psychosocial issues such as domestic violence and exposure to secondhand smoke [48].

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EHRS IN PRACTICE: CASE STUDIES The following case studies are examples of ways in which EHR technology contributes to patient care in the primary pediatric setting, and some of the complexities and limitations of EHR use in practice. Case 1 is drawn from patient-provider EHR experiences and shows the potential that EHRs hold to help clinicians provide more organized, comprehensive, and efficient care and to be more effective and efficient in quality improvement and management of patient populations (Box 1). Prescriptions are managed and patient histories, historical clinical data, and intervention tools are automated. Reporting and uses secondary to support care are not only possible but realistic, and support HIT Meaningful Use expectations. Questions that could be asked or considered by the prospective user of an EHR system about assumptions embedded in the example include: 1. Is an asthma flow sheet available in the system? 2. Are historical and current data entered into the flow sheet automatically, or does this have to be done manually? 3. Does the EHR support health information exchange (HIE) and communicate with local and statewide immunization registries? 4. Can diagnostic equipment, such as a spirometer, be integrated with the system so that data collected by the mechanism automatically populate both the clinical record and the flow sheet? 5. Can the flow sheet show recent or anticipated immunizations? 6. Are bilingual, interactive, and customizable documents and forms such as the Asthma Action Plan available or possible? 7. How is prescribing handled by the system?

Box 1: Case 1 JL is an 8-year-old asthmatic boy. He comes in to see his provider for an asthma follow-up visit. The pediatrician can see from his asthma flow chart in the EHR that he is due for spirometry, that his peak flows have been decreasing slightly, and that he is due for his flu shot. Because the EHR is interlinked with the state’s immunization registry, the provider is able to see all of JL’s immunizations, even those administered at other clinics. She evaluates him, documents his classification for severity and control status using a set of structured data questions, and adjusts his medication accordingly. The electronic asthma action plan in the EHR retained the unchanged fields from the prior visit, automatically pulls new data from today’s visit, allows for manual editing where needed, and is printed out in multiple copies, in English for the school and Spanish for the patient’s mother. Later, without doing a manual chart review, the physician is able to include data from JL’s visit in her CQI project, ensuring that her asthmatic patients are classified for severity and control status and that the patients with persistent asthma are on controller medications. This process is part of her preparedness for applying for CMS Phase I Meaningful Use reimbursement and for recognition as a Patient-Centered Medical Home.


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8. When data are stored in the system, are they stored in a reportable way outside a typical encounter note? 9. Is there a way to access the data to support unanticipated activities such as CQI projects and Meaningful Use attestations? Box 2: Case 2 A 16-year-old girl, LR, arrives at her pediatrician’s office for a routine health care maintenance visit, accompanied by her mother. As she is waiting to be seen, she completes a standardized psychosocial risk factor screening form on paper, in which she notes that she is currently sexually active but does not use any type of birth control. The pediatrician initially sees LR accompanied by her mother, addressing general nonconfidential health and preventive care issues. The mother expresses understanding about sensitive and private topics and agrees to leave the room while the pediatrician speaks to her daughter. With the mother no longer in the room, the pediatrician reviews the psychosocial risk assessment with LR and counsels her accordingly. She is interested in birth control, but requests that her mother not know about her sexual activity. The pediatrician reassures her that information between them is private and confidential. The pediatrician collects a urine sample for a pregnancy test, chlamydia, and gonorrhea screens. The pregnancy test is negative, with other results pending laboratory evaluation. The pediatrician writes a prescription for birth control pills, strongly recommending the additional consistent use of condoms. After their departure, the pediatrician scans the risk factor screening form into her office’s EHR and enters all other pertinent clinical information. A few days later, when pending laboratory results return, she speaks with LR, documents the phone call, and enters the data into the EHR. One month later, the patient’s mother calls the pediatrician’s office to inform them that the family will be relocating to another state and will therefore require copies of all medical records. One challenge is that, other than the scanned psychosocial risk screening form, information regarding the patient’s sexual activity, corresponding discussions, medication, and laboratory results is intermixed with more general health data.

Each of the examples described earlier are possible, but often not included in a typical EHR. Linkages to support the interface of a pediatric practice with state and other municipal public health systems (eg, newborn screening registries, communicable disease registries) remain a challenge faced by EHR users today, one that is not unique to pediatric practices [49]. The next case study presents HIT issues distinctively found in pediatrics (Box 2). In contrast with case 1, case 2 suggests a variety of barriers, challenges, and pitfalls that may be associated with EHRs. Many of these are unique to pediatric care and may directly affect the pediatric team’s ability to provide appropriate services. The case describes a typical adolescent well-care visit. The completion of the psychosocial risk screening form on paper suggests an opportunity to integrate patient or consumer-side work into the system by incorporating standardized screening forms in the EHR. However, this incorporation can be challenging because copyrights on many screening tools may require permission, special programming, and extra expense for use.


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As was noted in case 1, EHRs improve and broaden the availability of data for patient care, which is where an EHR can excel in supporting a pediatric team’s work. A challenge arises when the paper-based screening form is reviewed externally to the EHR. It is usually possible to scan paper forms into an EHR, but the information in the resulting document is not available for computer-generated reporting. Failing to incorporate the content of the form directly into the EHR is a missed opportunity to use screening results in meaningful ways to enhance patient care and better describe population needs and trends without a manual chart review. There is a set of problems that is not necessarily unique to pediatrics, but nonetheless of vital concern. These problems begin with the parental/caregiver request for records as part of the family relocation.

How can the patient be assured that the parent will not receive the portions of the record that are considered sensitive and are legally identifiable as such? Does the EHR allow the clinic to mark portions of the record as sensitive and control who may and may not have access to the information? Is it possible for the EHR to alert the staff about a request that may be inappropriate or in violation of regulations? Does a firewall exist to protect the patient from miscommunication of sensitive information? What mechanisms exist when that firewall needs to be overridden?

Similar examples exist in human immunodeficiency virus (HIV) care, mental/ behavioral health care, and a variety of other areas of clinical care in which there is likely to be sensitive information that may not, or should not, be shared. Sharing electronic health data (HIE) is an issue that particularly affects pediatrics. Box 3: Case 3 AD is a 14-year-old boy with a seizure disorder at his fourth visit to a community health center clinic. On his first visit 6 months earlier, the pediatrician referred him to a neurologist at a local academic institution to gain better control of his seizures. Despite several visits with a pediatric neurologist, seizure activity had continued. During the initial intake, the pediatrician also noted several symptoms consistent with depression and that the patient repeatedly expressed frustration and anger associated with his medical condition. He referred him to the social worker in the clinic for additional evaluation and support. At today’s visit, the mother tells the pediatrician that they saw the neurologist 2 weeks earlier and that he changed the patient’s medications. Neither she nor AD can remember the name of the new medication, or the exact dose. The patient has been complaining of stomach aches during the last week and has not attended school. The provider looks in the EHR and finds that an initial report from the neurologist was received by mail and scanned in to the EHR. However, there were no follow-up reports from the 2 subsequent neurology visits. AD has been seeing the clinic social worker regularly, and all of her notes are present in full in the EHR. On review, the pediatrician notes that the patient reported to the social worker that he has been the target of bullying at school. He was reportedly tearful at the last visit when he disclosed this to her, saying that he has never told this to anyone before and that he does not want anyone to know.


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Case 3 shows how EHRs may be used to improve communication on referrals and how, given the appropriate availability of information, a better clinical picture of a patient’s health status can lead to improved treatment (Box 3). In principle, the EHR centralizes and notifies its users about activities and outcomes for referrals. It ensures alignment between the onset of a set of symptoms and changes in medications and that providers are aware of psychosocial concerns. The lack of alignment among the providers associated with this referral indicates the degree to which the potential of the EHR technology is not yet realized in terms of better managing transitions across provider systems and improving care coordination. Additional problems arise because adherence with subspecialist appointments may be hard to track when the providers are not part of a closed hospital system or network. In this case, not all of the follow-up visits for the neurologist are available in the electronic record, medication changes have not been recorded, and the intervention plan for this patient is unclear. This case also shows another dilemma facing users of a shared EHR in a comprehensive medical/health home model: is it appropriate for the primary provider to have full access to the patient’s mental health reports? What are the legal and ethical firewalls that should be considered to provide the best care for patients, while also respecting their privacy [50]?

Box 4: Case 4 Dr S is excited that his clinic has implemented a new EHR, and that his providers have been using it for about 6 months. He is trying to figure out the best way to maximize the potential of his EHR to help him increase efficiency and quality of patient care. He knows that many of his patients struggle with food insecurity and would like to assess what percentage of new patients report this as a problem. He works in a small practice that does not have an information technology team for technical support. He knows that most of his colleagues ask about food and housing, but, on exploration, realizes that they each use their own protocol and document differently. Dr S calls the EHR vendor to ask about the best way to extract this information from the EHR and is told that he will have to do a manual chart review because they are not structured data. The vendor tells him that requested data points can be programmed into the EHR but the customization will be costly. In addition, if he then wants them to create a report that can electronically extract that information, he will have to pay an additional fee.

Case 4 reflects an increasingly common set of challenges in EHR systems (Box 4). Data are entered and present a reasonable patient chart. However, when there are opportunities to use data in other ways, including practice management, trend analyses of patient needs and interventions, and quality management, users face a variety of barriers. Some vendors are attempting

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to build improved reporting systems, although this is a complex challenge based in the sometimes conflicting requirements to produce and EHR system that allows user flexibility versus a rigorous, highly structured method of data entry that can yield reliable quantitative information. STRUCTURED DATA, UNSTRUCTURED DATA, AND REQUIRED FIELDS The following are some essential data elements that must be considered in designing an EHR for data reporting functionality: Structured data Structured data is a type of information that can be highly bounded and defined. In any EHR, there is a place to write free text about a specific issue affecting the patient. However, only structured content allows the provider to select from a discrete set of choices to make it possible for information to become ready for automated data extraction. In addition, the specificity that is used by the provider is dictated by the choices. An example of structured versus free-form content would be a Yes/No check box to indicate whether a patient has been diagnosed with asthma contrasted with writing in the note, ‘‘Patient history is notable for asthma diagnosed at age 5 years.’’ Any data point that always follows a consistent format (eg, ICD-9/10 codes) or whose characteristics can be tightly controlled (eg, a patient’s height in centimeters) can be structured. Recording the appropriate ICD-9/10 code for asthma would also serve as a reportable way to identify a patient with this diagnosis and facilitate tracking and reporting. If the possible responses to a question are limited, a drop-down list in the EHR can facilitate chart notation and enable automated data extraction. An example is developmental screening results, which can always be expressed as within normal limits (typical development), at risk (monitor development), or suspected developmental delay (refer for full evaluation). Using structured data facilitates simple reports using frequencies (eg, how many patients have received a developmental screening), means (eg, the average age of patients who screened positive for developmental delay), and use (eg, how many patients appeared for a well-child visit this year). In the traditional subjective, objective, assessment, plan (SOAP) evaluation and notation format, structured data elements are particularly well suited for objective, assessment, and plan items. In addition, structured data are often used as the trigger point for clinical decision support. An ICD-9/10 code may trigger the system about the need for public health reporting. Immunization information may alert the clinic to an upcoming immunization opportunity. An electronic prescription may set off an alarm about a drug-drug interaction or the need to refill an associated medication. The standardization and predictability of structured data


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becomes the mechanism that activities and enables clinical decision support tools. Structured content can allow systematization of core questions that providers in a clinic or clinic system ask and that reflect the population-specific needs, and can make these elements reportable for internal process analyses and quality improvement. This type of systematic data may allow better descriptions of the patient populations, enabling more effective allocation of resources and advocacy for appropriate support. Structured content is also useful in pediatric training. The structured content helps new practitioners understand and meet the norms, standards, and requirements of the clinic system. For vulnerable patient populations where many of the questions are of a sensitive nature, having a system that normalizes and accepts these content areas can also make the patients more comfortable disclosing personal information, such as homelessness, histories of abuse, illiteracy, and high-risk behaviors. Unstructured data Unstructured data is a type of data that is unpredictable or highly variable in nature. Often, unstructured data are entered into free-text fields in which anything can be typed. For example, where a numeric or positive/negative laboratory result will do well as structured data, an adolescent patient’s description of personal issues may be important to record in terms of a structured diagnosis, but the description itself may be served best by a written note and impressions. These free-text notations do not lend themselves to automated reporting out of the EHR. The best approach is often a measured combination of structured and unstructured data, such that concerns around standardization and reporting can be met, while allowing providers the opportunity to describe patient-specific circumstances. Required fields One way to ensure that data for which there is a reporting requirement are appropriately entered is to structure the data and make their entry required. EHR technology allows the incorporation of required fields that can be used to force a clinician to enter 1 or more data points into the electronic system. Required fields can be used to force everyone following a clinic protocol to document in a specific way. When a field is required, the user may not leave the required section until each field is populated. This sort of requirement can be useful, especially when undertaking quality improvement activities, participating in clinical research activities, providing medical student and resident education, or formalizing data points for regulatory compliance [51]. Required fields must be balanced against an individual’s need for flexibility and the inherent frustration and fatigue associated with over-requirement of more data fields than necessary. Pediatric EHRs are comprehensive data repositories describing a broad range of patient issues, as well as quality and consistency or care. Making

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effective use of EHR data, which entails getting the data out in the form of automatically generated reports, is a significant challenge with responsibility at the vendor and user level. An EHR or its vendor should:

Indicate clearly where data elements are unstructured (less suitable for reporting) and where they are structured (better for reporting) Provide comprehensive references and training so that the practitioners will understand what data they will be able to manage outside the encounter note (eg, development of patient registries for overall care management and communication) and what areas will require specialty programming (eg, report development for outcomes research, trends specific to the practice, and quality of care management) Reflect a practice’s understanding of common and unique areas of interest or be easily customizable. These may include food and nutrition issues, HIV/acquired immune deficiency syndrome social support systems, or asthma prevalence and outcomes Facilitate provider ability to assess the status of interventions, such as immunizations given or prevalence of diagnoses, in a subset of patients compared with the practice as a whole at a point in time and over time Include clear guidelines for standardized interpretation and recording of clinical information. Even where data are unstructured and therefore less sympathetic to reporting, consistency eases manual reviews and quality assessment.

CONSIDERATIONS IN THE DEVELOPMENT OF PEDIATRIC EHR CLINICAL CONTENT Optimally designed EHRs have content that reflects the population-specific needs of the patients and operational context (ie, community health center, hospital ambulatory clinic, private health system clinic) that are part of the practice. The clinical content is the sum total of information that needs to be recorded, in structured or unstructured modes, during the course of all possible patient interactions in the organization. The content is designed to flow in a way that providers find intuitively matches the way the clinical encounter and other activities are managed, which inevitably requires customization to meet the needs of patients and providers in diverse health care settings. Clinical content in some EHRs reflects the nature of care in clinical specialties and subspecialties such as cardiology, obstetrics, neurology, and geriatrics. Each specialty has unique vocabulary elements that describe systems, assessments, processes, and plans. A controlled vocabulary performs the same role as published diagnostic and billing codes, standardizing clinical concepts for a high level of descriptive consistency. Pediatrics has its own child-specific vocabulary, including diagnoses and care protocols that might not be well represented in internal medicine or geriatrics. This article presents 7 representative examples of pediatric-specific EHR content, EHR functions, and pediatric EHR concerns. Each content example is taken from an existing EHR with a large pediatric content set. This EHR content set has been under development for 25 years and has been subject to intensive research, field testing, feedback, and clinic-setting refinement


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with general and priority pediatric populations.d,e The development process involved health information technologists and a range of child health care professionals, including pediatricians, nurse practitioners, and diversely credentialed child and adolescent mental health professionals who provide care in an extensive national network of comprehensive pediatric services for vulnerable pediatric populations, all working within a medical home model.f Examples of function and concern are derived from current pediatric HIT tools, practice, and evolving clinical, regulatory, and pediatric practice mandates. Structured data: history, orders, and plans In pediatric care, and especially in medically underserved pediatric populations, the social history is an important part of understanding the context of the patient. Knowing the circumstances of the child and family may be essential to appropriate care. Categories in the social history that can be important include those listed later, each of which should expand extensively into specific structured data elements, many of which need to take on additional dimensions in pediatric care. Examples include education, country of birth, housing situation, family social interactions, foster care, spiritual history, activities, work history, depression, and self-image (Box 5). The structured nature of the content is a framework from which to maximize achievement of several goals. 1. It follows a logical order that reflects the feedback from providers in the clinic. It follows a flow that makes sense to those who use it. In addition, without the aid of specialized templates or forms, the content makes clinical sense and offers the various choices typical of the pediatric population under care. Providers select the components relevant to their patients. 2. The available choices provide consistent, efficient recording of data, minimizing data entry errors, and making the task of collecting the data predictable. Because the data are structured, they are easier to extract at a later time. Providers can see practice-wide numbers and trends for their patients, to develop a deeper understanding of the pediatric population education status and how this may affect individual and community health. Accompanying unstructured fields are important for more in-depth, descriptive information to be entered when needed, but retrieval of this information necessitates a manual chart review. 3. The consistency of the content allows assessments to ensure that all practitioners are properly completing the information, and the EHR system to support a high quality of care.

As with the aspects of social history, structured clinical content elements that are useful in EHRs include anticipatory guidance sets, specific plans for disease d Pediatric priority populations include vulnerable children in diverse settings and circumstances (eg, inner city and rural poor, homeless, street youth, children in transient farm work families). See, for example: http:// www.ahrq.gov/populations/. e Further information on the Children’s Health Fund national network is available at: http:// www.childrenshealthfund.org/child-health-care/national-programs-by-project. f Further information about this process is available at: http://hunter.chfund.org/content/.


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Box 5: Sample EHR content for social history (education) Using education as an example from social history, the content in an EHR can be structured, with the major item followed by 1 or more sets of check boxes or drop-down lists with choices, as indicated. Free-text, nonstructured space can accompany each item, enabling providers to expand and clarify descriptively, when desired. Education Parent/caretaker Completed: (drop-down list for highest completed) Grade (specify) Elementary school Middle school General Equivalency Diploma High school Some college College Some graduate school Graduate school Currently attending: (drop-down list) Patient In school: Yes No Not in school because: Dropped out Moved Graduated Other Grade level: (drop-down list) Completed: (drop-down list) Grades: Mostly As Mostly Bs Mostly Cs Mostly Ds Mostly Fs Grades have been: Improving Staying the same


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Getting worse Academic concerns: (multiselect) None Worsening grades Learning difficulties Reading difficulties Math difficulties Poor grades Repeated a grade Special education English as a second language Other Nonacademic concerns: (multiselect) None Absenteeism Attention problems Disruptive, oppositional behavior Appears sad, withdrawn Suspension(s) Expulsion(s) Other Patient has an adult at school to talk to: Yes No Likes school: Yes No Favorite subject: (drop-down list) Least favorite subject: (drop-down list)

or visit types, and order sets. Having well-designed content can increase the uniformity of care and intervention, when appropriate. They can be especially useful in targeted initiatives focused on prevalent conditions affecting the populations served. Box 6 shows how structured data may be used in the management of asthma.g g Asthma content was developed by a team lead by CHF’s New York Program (Children’s Hospital at Montefiore, Albert Einstein College of Medicine) and included the District of Columbia Children’s Health Project (Children’s National Medical Center), and the Breathmobile Program at Phoenix Children’s Hospital. For additional information see: http://www.childrenshealthfund.org/child-health-care/special-initiatives/childhood-asthma-initiative.


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Box 6: Sample EHR content for asthma care plan Asthma: care plan Reclassification Reclassification at today’s visit: Not indicated Intermittent Mild persistent Moderate persistent Severe persistent Controller Controller for today’s visit: Not indicated Already on controller New controller prescribed today Flu vaccine Flu vaccine plan for today’s visit: Will give today Not in season Declined Unavailable Asthma tools Patient has an asthma action plan: Yes No Asthma items given to patient: Asthma action plan Family asthma guide Spacer Peak flow meter Mattress/pillow cover School medication administration form Stress Guardian finds taking care of child’s asthma to be stressful: Yes No Guardian would like to talk to someone about stress: Yes No


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Well-designed and well-organized content can contribute to a clear and replicable record for a specific patient and to a comprehensive set of reports and related activities across the clinic’s pediatric population and for broader public health activities. If an EHR has special features that allow for the development of specialized templates or forms, well-constructed data provide the building blocks on which the tools can be built. However, if such special features are not available or are cost-prohibitive to develop, well-constructed content is more than adequate. Ability to document caregiver information A dilemma often faced by pediatric providers is how to document information that reflects the parent or other caretaker, who may or may not be a patient in the practice. For example, it is recommended and appropriate for pediatricians to screen new mothers for postpartum depression using a standardized, validated tool [52]. However, there is seldom an appropriate place in the pediatric note to house the screening tool for the mother, or even to document the results. A similar case may be found in pediatric care when managing mental health or psychosocial issues, for which collateral contacts are made with parents, teachers, and others involved in the child’s care. Documentation of the information is critical; however, mixing patient and caregiver data may become confusing to those who access the notes later or when developing data reports. Failure to provide a logical and clearly delineated way to enter relevant caregiver information in the EHR may discourage the pediatric provider from delivering optimal care. It is not enough to structure data; the content must reflect the realities of use, and ideas must be tested in day-today practice. Units of measurement One of the fundamental and often overlooked areas of differentiation in pediatric versus adult EHR requirements may be found in units and precision of measurement. This differentiation is notable in the units used for weight and height beginning in infancy, underscoring the importance of this issue in pediatrics. In the neonatal intensive care unit and the newborn nursery, age may need to be measured in minutes, hours, or days. In a general pediatric practice, the electronic record must have the ability to record age in units of days, weeks, months, or years. Prescribed medications for children must be dosed by weight, and the calculation is done in using the metric system. Dosing a medication erroneously based on the weight in pounds can result in more than double the correct dose of medication. The use of liquid preparations of oral medications, often available in multiple concentrations, adds complexity to the dosing calculation in pediatrics and thus increases the risk for error, but many EHRs do not support this level of specificity. However, complete conversion to the metric system is impractical for ambulatory pediatrics, because most parents in the United States relate to their child’s weight in pounds (and height in feet and inches), as do most required forms for daycare, school, and sports. This

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preference necessitates at least some EHR-based conversion ability, both in posted weight and in association with growth charts. An EHR that cannot perform conversions undermines quality of care in general. One that does not reflect the complex challenges of pediatric dosing and calculation of age is inadequate. Pediatric norms Lack of pediatric norms is an area that may be problematic for pediatricians using typical, adult-oriented EHRs. For example, for blood pressure, what is normal depends on the age and gender of the child. Most EHRs only contain alerts based on adult normal values. As such, EHRs are not fulfilling their potential to provide clinically useful alerts based on the range of appropriate norms for pediatric patients. At worst, lack of pediatric norms can be dangerous by implying that a value is normal when it is not. Normal values for spirometry and peak flows similarly depend on the individual’s age, gender, and height (and even ethnicity, for spirometry). An EHR that is sensitive to pediatric expectations and that can show patient results relative to accurate age, demographic, and anthropomorphic norms, especially in graphical form, aids in clinical care rather than hindering it with confounding adult standards and references. This challenge is also seen in growth chart representations [40]. The basic charts may do an adequate job of representing the patient’s growth, but they tend not to effectively represent special cases in which children do not follow the typical pattern, as in the case of prematurity or Down syndrome. Lack of incorporation of adequate tools for children with special health care needs into the EHR may compromise quality of care [53]. Developmental screening There is evidence that, when primary care providers routinely use standardized developmental screening tools, early identification and referral for developmental delay significantly improves [54]. Implementing EHR technology can improve routine developmental screening by providing prompts at ages at which a screening should be done and facilitating tracking of screening results [55]. An optimal pediatric EHR would incorporate standardized screening tools. One important concern is that many developmental screening tools are proprietary. Their use in EHRs may require licensing fees for the EHR vendor or end user. As with growth charts, the lack of integrated screening tools may decrease regular, formalized screening. Although scanning forms into a patient’s electronic record is one solution, it undermines the ability to follow changes by leveraging structured data elements, and scanned forms are less likely to be referenced during the encounter. Referral tracking Comprehensive referral tracking is emerging as an important component of EHRs, including the ability to ensure that the specialist note is received, charted, and discussed with the patient/caregiver (closing the loop). This part of care coordination is clinically important to the patient and is a measure of


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effective interpractice communications. Although the degree to which pediatricians engage in the various details of referral management varies, care coordination is seen as critical to the medical home model and overall quality of care. Lack of coordination in the pediatric referral process is often a significant barrier to care for low-income and medically underserved children and adolescents [56,57]. Understanding patient adherence with referrals can increase practice efficiency and improve patient/caregiver-pediatrician communications. An EHR should provide a means to accommodate externally sourced data including laboratory results and subspecialty reports. As seen in the earlier cases, the pediatric practice needs to develop processes that support timeliness and accuracy of information generated outside the practice. The pediatric patient and parent are also participants in the child’s medical/health home. Online tools such as patient portals can be used both to provide families with health information and to remind them of upcoming referrals and other schedules activities such as follow-up visits. Confidentiality, behavioral health, and sensitive health information There are patient privacy and confidentiality considerations that are reflected in all fields of health care practice. There are also domains that are unique to pediatrics, especially adolescent health. The Society for Adolescent Health and Medicine (SAHM) considers effective, and effectively communicated, confidentiality policies to be essential for adolescents to seek and receive care for sensitive concerns and to disclose sensitive issues to their health care providers [58]. As described in case 2, this remains a major challenge in the functionality of pediatric EHRs. How EHRs handle the identification, segmentation, and sharing/exchange of this information remains a challenge toward the goal of EHR adoption in pediatrics. Case 2 reflects some of these challenges. When a minor may legally consent to care varies across states, and how sensitive information is to be treated in the face of a parent or guardian’s request is still to be standardized at a technological level. The quality of safeguards to protect children and adolescents in the face of inappropriate disclosure of data, despite standards established through the Health Insurance Portability and Accountability Act, has not been well addressed in current EHRs [59]. These issues are most prominent when sensitive health information (eg, reproductive health options, mental health care) are involved. The issues around appropriate standards to send and receive documents containing protected health information are not limited to issues around minor consent and privacy. The ethical and legal implications of health information storage, including patient opt-out provisions, remain among the unresolved issues affecting broader EHR adoption and use [60] and the fulfillment of their potential to improve patient care and promote patient safety [61]. SUMMARY EHR systems provide significant opportunities to enhance pediatric care. Wellconstructed clinical content, HIE, automated reminders and alerts, and reporting

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at practice, community, and public health levels are available in several current systems and products. However, the general focus on inpatient and adult populations in the design and marketing of these systems should be seen as a significant barrier to EHR adoption among pediatric primary care providers. Weight-based medication dosing, specialty growth charts, units of measurement and time, and measures to address minor consent and adolescent confidentiality are not universal in quality and availability to the pediatric practice. However, there are opportunities for pediatricians to provide input and to clearly state minimum requirements when dealing with vendors or when government agencies (eg, ONCHIT and AHRQ) seek comment on standards, practices, and expectations. This article uses cases and examples to describe some areas in which pediatricians should take an active role to advocate for pediatric-appropriate EHR tools. Virtually every child born and cared for in the United States today will have their data and information recorded in an EHR. The quality of the information and the HIT in which it is recorded can affect the care they get as children, and the information they carry into adulthood. References [1] US House of Representatives. Committees on Energy and Commerce, Ways and Means, and Science and Technology. Title IV: Health Information Technology for Economic and Clinical Health Act or HITECH Act. January 19, 2009. Available at: http://waysandmeans. house.gov/media/pdf/110/hit2.pdf. Accessed December 2, 2011. [2] US Department of Health, Human Services. HIT Policy Committee: Meaningful Use Workgroup request for comments regarding Meaningful Use stage 2. Available online at: http:// healthit.hhs.gov/media/faca/MU_RFC%20_2011-01-12_final.pdf. Accessed December 2, 2011. [3] Public Law 111–3. Children’s health insurance program reauthorization act of 2009. February 4, 2009. See Title IV, Sec. 401, (f). Available at: http://frwebgate.access.gpo. gov/cgi-bin/getdoc.cgi?dbname¼111_cong_public_laws&docid¼f:publ003.111.pdf%20. Accessed December 2, 2011. [4] American Medical Association. H.R.1, the American Recovery and Reinvestment Act of 2009: explanation of health information technology (HIT) provisions. No date. Available at: http://www.ama-assn.org/ama1/pub/upload/mm/399/arra-hit-provisions.pdf. Accessed December 2, 2011. [5] ABMS announces certification in two new physician subspecialties: clinical informatics and brain injury medicine. American Board of Medical Specialties; 2011. Available at: http:// www.abms.org/News_and_Events/Media_Newsroom/Releases/release_Announcing_ TwoNewSubspecialties_10312011.aspx. Accessed December 2, 2011. [6] IDC Health Insights. Press release: IDC Health Insights’ IDC MarketScape examines eight leading vendors of EMR/EHR technology. November 21, 2011. Available at: http:// www.idc-hi.com/getdoc.jsp?containerId¼prUS23150611. Accessed December 2, 2011. [7] Pfoh ER, Abramson E, Zandieh S, et al. Satisfaction after the transition between electronic health record systems at six ambulatory practices. J Eval Clin Pract 2011. DOI:10.1111/ j.1365-2753.2011.01756.x. [Epub ahead of print]. [8] McGinn C, Grenier S, Duplantie J, et al. Comparison of user groups’ perspectives of barriers and facilitators to implementing electronic health records: a systematic review. BMC Med 2011;9:46. [9] Zandieh SO, Yoon-Flannery K, Kuperman GJ, et al. Challenges to EHR implementation in electronic- versus paper-based office practices. J Gen Intern Med 2008;23:755–61.


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