Access to Critical Health Information for Children During Emergencies: Emergency Information Forms and Beyond

Historically, the EIF focused on CYSHCN. Access to critical information during times of emergencies and disasters remains especially important for these children. CYSHCN are defined as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”^6,7  More than 10 million children in the United States,⁸  accounting for close to 20% of all US children,⁹  meet this definition. A subset of CYSHCN are children with medical complexity (CMC), who are defined as children with substantial health care needs, 1 or more chronic medical conditions, functional limitations often associated with technology assistance, and increased health care resource utilization.¹⁰  Cohen and colleagues elaborated on this definition and proposed thinking of CMC as those children with substantial family identified service needs, characteristic chronic or severe conditions, functional limitations, and high health care utilization.¹¹  Technology dependency refers to the use of medical devices without which, if they fail or were to be discontinued, adverse health consequences and hospitalization would likely follow.¹⁰  It has been reported that 13.9% to 15.6% of children in the United States fit into 1 of these categories.⁶  A 2011 survey of children’s health found that 19.5% of children ages 0 through 17 years in Illinois have a special health care need, with a prevalence of 25.5% in those ages 12 through 17 years.¹² 

A study conducted by O’Mahoney et al found that 20% of visits to a pediatric ED were by children with chronic conditions. These children had increased ED length of stay and increased rates of hospital and pediatric ICU admission. The authors called for prearrival identification and use of individualized emergency care plans.⁶  It has also been shown that CYSHCN are more likely to be transported by advanced life support-level EMS professionals and are more likely to undergo procedures than other children in the prehospital setting.¹³  As a result, the core set of data previously identified in the EIF would be useful to EMS professionals, emergency physicians, and the entire emergency care team.

Prior work by Pyles and colleagues showed that use of a web-based database to update EIFs and make them accessible to EMS professionals and emergency physicians increased parental comfort with emergency care provided to children with congenital heart disease, even though the database was rarely accessed during their children’s visits to EDs.¹⁴  Some resistance was noted on the part of some emergency physicians to use the system because of lack of awareness, concerns about accuracy of the information, and perceived usefulness. Emergency physicians who did access the system endorsed its usefulness and its ability to facilitate contact with the patient’s specialist physician.¹⁴ 

Recent work by Abraham et al using simulated patient scenarios in CMC showed that the use of a modified EIF was associated with improved performance during simulated emergencies, as evidenced by increased performance of critical actions, more rapid provision of care, and decreased complications across the spectrum of attending physicians and fellow and resident trainees when compared with care provided to CMC without access to an EIF.¹⁵  Despite these endorsements and findings of efficacy, the EIF remains underrecognized and underutilized.¹⁶ 

The value of greater access to health information is also found in work supporting the benefits and responsibilities of the medical home, where a child’s care is offered with knowledge of their health history and specific needs.¹⁷  An AAP clinical report notes that the primary care physician or medical home for CMC and children with disabilities should have a systematic method of communication among all clinicians. For decades, good practice has dictated that up-to-date problem lists, medication lists, allergy lists, immunization history, and more should be managed and curated as part of the core health record. We are reaching the point where this curated information can be managed so it is accessible to all those who contribute to the patient’s care, providing an opportunity to promote high-level care for children even when they are seen by emergency physicians, APRNs, PAs, and other acute care clinicians who do not know them well.

Although the original EIF was developed for CYSCHN, having an EIF for any child who is separated from his or her family or caregiver, guardians, or siblings during a disaster could provide physicians and other members of the health care team key information about the child. The EIF would also assist caregivers and physicians and other health care professionals in caring for children in foster care or other child welfare settings. An EIF could benefit all children, not just CYSHCN. The current common clinical data set (CCDS), as defined in 2015 Certified EHR Technology criteria,¹⁸  seeks to define the necessary data elements to help ease transition but lacks some of the clinical elements necessary for emergency care. As an example, access to immunization records can prevent unnecessary immunization or diagnostic testing.¹⁹  Although all states now have immunization registries, which make a child’s immunization record available to any care provider, inclusion of this information in an EIF would provide an alternative source of this information. After Hurricane Katrina, a mobile pediatric emergency response team that cared for displaced children found that no patients with special needs had their medication or prescriptions for their chronic conditions.²⁰  In addition to a medication list and allergies, which are currently included in most transition of care documents, having details such as timing of doses, supplies, and information about how to administer medications could be critical to pediatric patients. Electronic access to health information for displaced people has been shown to be achievable and useful after both Hurricane Florence in 2018²¹  and the California wildfires in 2017 to 2018.²²  In California, the Patient Unified Lookup System for Emergencies (PULSE) was used to access health information by health care volunteers and showed the feasibility and usefulness of a continuity of care document (CCD).²² 

Families, caregivers, and guardians should be encouraged to promote access to their updated information in a CCD (such as an EIF) in all areas where that child may routinely be treated. In disaster planning, families, caregivers, and guardians should also be encouraged to consider how this information can be shared. Most agencies favor an opt-out rather than opt-in approach for clinician access to health data from other institutions providing care. Professional organizations (eg, AAP, ACEP, Emergency Nurses Association [ENA]) might also be able to play a role in such an effort by providing expertise and guiding development of processes and procedures.

As EHRs and PHRs, including patient portals in EHR platforms, continue to develop and become more pervasive, a way to quickly access critical information from these sources could potentially facilitate rapid provision of high-quality emergency care to children. Developing a list of available and agreed upon data elements to provide quick access to information from the EHR has been an important first step. Working with EHR and PHR vendors to develop ways to quickly access this information would promote its use and enable health care information to be readily available. Patient portals in EHRs could provide families and guardians a way to access, review, and edit this information.

In 2012, Irmiter and colleagues “identified a set of minimum health information elements that first responders and receivers must have to ensure appropriate and timely care.”²³  The vast majority of these elements are included in the recommended data elements in the revised EIF (Supplemental Table 1). Additionally, almost all of the recommended data elements are included in the US Core Data for Interoperability 2019 Version 1 (USCDI V1).²⁴  Identifying and prioritizing essential data elements should be based on the utility of each element to positively impact the care that is provided to the patient. Input regarding usefulness should be sought from a wide variety of stakeholders, including patients, families, caregivers, medical home and specialty care physicians, EMS professionals, emergency physicians, APRNs, PAs, other ED staff (including nurses, social workers and registrars), public health officials, and others who would be responsible for receiving patients during times of disasters.

There is also utility, especially for CYSHCN and CMC, to have narrative, free-text fields available where brief descriptions of things unique to that person (eg, physical findings, objects or approaches that promote calm for the individual, or even unique identifying skin findings) or instructions of how to begin care (eg, procedures or medications that should be avoided or a personalized approach useful in any emergency for that individual) may be documented. Identifying these emergent, “initial encounter” types of intervention are most accurate when provided by the primary care medical team or specialists who direct the care of the patient in partnership with the families and caregivers who know these patients the best. Additionally, regular updates to this type of data should be adhered to, as inaccuracies may be detrimental to care. The task of completing these fields will fall to the medical teams who usually provide care to these patients. Patients, families, guardians and caregivers, and patients who are able to participate (youth, adolescents and young adults who are cognitively able) may contribute to the revision of the information and help to ensure that these are updated as needed.

The revised, suggested list of data elements and headings is shown in Supplemental Table 1. The “initial encounter information” is intended to provide data that are critical to the immediate approach to care for that patient. Are there advance directives? Are there specific evaluations or therapies that should also be started immediately (eg, provision of dextrose in patients with certain inborn errors of metabolism) or that should be avoided (eg, ondansetron or amiodarone for children with certain cardiac conduction abnormalities)? Does the child have allergies to medications, foods, or substances (eg, latex) or does the child have any indwelling devices or is the child reliant on any appliances or technology?

Making what is critical for the provision of emergency care available must be balanced against the risk of providing too much data so that care is actually made more complex or impeded. For instance, if a child with a seizure disorder responds to typical emergency medicine approaches to seizure management, there may be no need to list a seizure plan. However, if the child is known to be nonresponsive to certain commonly used medications or to require a custom management plan, it would be quite helpful to have that information.

Requirements exist for current methods for secure patient data exchange, with the intention that patients have access to documents and data from their own PHR, which they can share. Ideally, this would be in a digitally secure platform such as a PHR so that the family or caregiver could print it on paper, if necessary, with the appropriate date stamp. EHR vendors could develop systems to help provide tools that support this type of proxy data management. The provision of such information to teams providing care to these children is in the best interest of those children.

Several states have developed registries whereby families or caregivers of CYSHCN can complete a form that is then housed with the local EMS agency or a state agency, which provides EMS “prenotification” of a CYHSCN or technology-assisted patient. In Delaware, the Special Needs Alert Program (SNAP-911) is open to any child age 0 to 21 years with special health care needs, including chronic diseases such as seizure disorders, diabetes, behavioral health problems, or cerebral palsy. Families or caregivers enroll the child and complete a consent form and an EIF. If they need to call 911 and they say the child is a SNAP-911 child, the dispatcher can provide EMS professionals with notification and health information.²⁵  In Utah, the Children’s Health Information Red Pack program provides information to EMS through a health information sheet, which is similar to the AAP and ACEP EIF. Included in the Red Pack are 2 document vials to store current copies of the health information sheet (placing 1 inside the door of the refrigerator), a sticker to place inside the front door to the home to notify EMS to look in the refrigerator, and a magnet for the refrigerator. A letter is sent to the local EMS agency, and the system is Health Insurance Portability and Accountability Act compliant.²⁶  Many of these registries also provide information about the presence of equipment, such as a ventilator, that would require electrical back-up in the case of a power outage or oxygen use in the home. This information would be useful for local or regional emergency planners in anticipating the needs of technology-dependent patients during a disaster.

The Red Cross has developed a web-based data system (http://www.redcross.org/safeandwell), and the National Center for Missing and Exploited Children also has a Web site (www.missingkids.com) that has been used to match children with family members after a disaster and may be able to provide access to a family member with medical information.^27,28 

HEIs, such as the Chesapeake Regional Information System for our Patients²⁹  and other databases (eg, immunization registries and state-based prescription drug monitoring programs) already provide health care professionals with information collated about patients from multiple sources. Integrating this information with and providing similar ways to access the data elements essential to have access to during emergencies is an important next step, especially for CYSHCN but may be beneficial for all children.

Although having an electronic form can be helpful, the wide variety of EHR systems may make accessing or retrieving the form between different platforms challenging. PHRs and other applications that allow individuals to access, manage, and share their health information and that of others for whom they are authorized to review and correct errors in medical records have been shown to be associated with improved health care results.³⁰  However, these types of applications have been found to be difficult for patients to use and understand,³⁰  and consumer surveys have shown that privacy and security are major concerns.³¹  Transparency on how a child’s health data may be used may help to promote trust with patients and their family members, guardians, and other caregivers. Physicians and other health care professionals have expressed concerns about the accuracy of patient- or family-provided information, the elimination of important information by patients, and subsequent professional liability.³⁰ 

The Centers for Medicare and Medicaid Services (CMS) and the ONC established criteria that EHRs must meet to qualify as certified for use in federal quality and payment programs as well as the Medicaid Promoting Interoperability Program (meaningful use).^18,32  The Common Meaningful Use Data Set, which became the CCDS in 2015, was last updated in 2018.¹⁸  With the passage of the 21st Century Cures Act, the USCDI further delineated a more inclusive data set as well as new standards for data sharing. Because this data set overlaps with many of the identified critical data elements in the EIF, there may be an opportunity to leverage this existing functionality in certified EHRs to generate the contents of a transition of care summary, which can then be updated with additional information and tailored to meet the needs of an EIF form. Some EHRs currently have similar functionalities that are used to produce school physical forms, camp forms, and other collections of needed data for patients and families.

As EHR use has become pervasive,³³  the use of stand-alone paper-based forms, separate from an EHR, is likely to become even more of a challenge to maintain. This is especially true given the overlap with required elements in the USCDI. The data elements to be included in the revised EIF listed in Supplemental Table 1 are ones that, when assembled, have the potential to improve emergency and acute care for children regardless of setting. EHR systems could be used to pull those data elements into a report that could be accessed electronically. Primary care or subspecialist physicians or staff in the medical home could print time-stamped copies of these forms and provide them to families. PHRs could also allow families to update this information and print paper versions when they are not in a health care facility.

The current ubiquity of smart phones has provided a convenient platform for patients to access their own patient portals or aggregated data from multiple health care sources. Pediatric patients, and particularly adolescents, present more issues around how to manage confidentiality. Apps such as Apple’s Health app do not yet account for caregiver access or adolescent confidentiality. Several apps already exist that can maintain health information (eg, SOS QR by Humetrix and Health Records on iPhones). Important considerations for the selection and use of such apps include the ability to retrieve data through interoperability standards from 1 or more EHRs to avoid duplicate data entry, the implementation of best-practice privacy and security measures, and the potential to store information on more than 1 person’s device in the case of a caretaker or guardian role. In addition, a mechanism for timely access to data such as that contained within an EIF by emergency care teams would be useful.

“Privacy, security, interoperability, and adaptation to change” have been identified as major challenges to widespread adoption and maintenance of the core data set desired for acute patient care.¹⁶  Briefly, this is the balance of required security of health information with access to that information. In detail, these challenges include:

1. Maintaining up-to-date information. This could be especially challenging for medically complex children with multiple physician and other subspecialty care professionals and therapists. The data entry should not be redundant to other work performed in the EHR.

2. Ease of use by both families and physicians, PAs, APRNs, and other health care professionals has been perceived as a barrier to the use of both paper and electronic forms to date. Adoption of CommonWell, Carequality, and other interoperability standards should help.

3. For some families, limited access to smart phones, computers, tablets, or the internet may be an additional barrier to use.

4. Having the elements of the EIF accessible when needed.

5. Lack of payment for the amount of time needed to complete and update the data elements needed for the EIF form. This is particularly true when the patient is medically complex or when the form needs to be completed by hand. Compensation may be less of a concern when there is routine or automatic updating of forms using an electronic platform, forms are completed for children who are otherwise healthy, or eventually when updating the EIF data elements is bundled as part of the compensation for routine care.

1. The list of agreed upon data elements (Supplemental Table 1) should be able to be automatically pulled from EHRs and PHRs so that patients and families or emergency physicians, APRNs, PAs, nurses, or other health care professionals can access them when needed. The data elements should be able to be viewed in both an electronic form and in a format that is printable by patients, caregivers, and clinicians using the PHR or EHR (printable forms should be date stamped reflecting when it was updated).

2. The data elements should be readily accessible in a concise and organized format from EHRs and PHRs and in a standardized manner across platforms.

3. The patient’s medical home working with members of the care team, including primary and subspecialty care physicians, other health care professionals, families and caregivers, and patients (for older children and adolescents), would promote the maintenance of up-to-date data elements at all times.

4. Emergency information should be made accessible in several locations, for example in electronic format, web-based, and paper-based forms. This can include paper forms kept with the child (in a “go-bag” or in a backpack), at home, at school or in child care settings, in a family member’s or caregiver’s purse or wallet, in the family car, at sporting or recreational activity locations, at the physician’s office, at a local EMS agency, and with the child’s emergency contact person (in case of a disaster). The development and implementation of systems that allow EMS agencies to access the same electronic data available to families or guardians and clinic or hospital-based clinicians has the potential to further improve care and outcomes.

5. EHR and mobile health care app vendors should partner with regulatory groups and professional organizations like the AAP, ACEP, and ENA to implement the needed pediatric-specific data elements.

6. It is important to specifically ask families who opt out of interoperability or health exchange, especially those with CYSHCN, to reconsider their choice in light of how the information can improve the timely care of their child.

7. Emergency information is most useful when it is reviewed and updated by members of the health care team as often as needed and as it changes. For CMC, the emergency information should be reviewed at least every 6 months. For healthy children, emergency information can be updated at each health maintenance visit. This information should be updated in collaboration with families, family caregivers, an patients who are able to participate (youth, adolescents, and young adults who are cognitively able to contribute to these discussions) whenever there is a change in health status, management, medications, or treatments.

8. Disaster-planning efforts that include plans for how to best access health information during events and a local hazard vulnerability assessment that fully considers the needs of CYSHCN have the potential for improving health outcomes for these vulnerable children during such events. Information gathered in this way could inform planning efforts, for example, determining the number of ventilators needed in an area if a disaster occurs.

9. If patients have an acute care plan that may differ from standard care, families should be educated about the importance of sharing this information with EMS professionals and physicians and other clinicians who they encounter during emergencies. Likewise, when encountering a CYSHCN, EMS professionals, physicians, and other clinicians should ask families and caregivers if their child has an EIF or any special care plans and how that care plan might be accessed.

10. Innovative ways to promote completion and use of the EIF, including research and quality improvement projects, should be explored and promoted. Rules proposed by the ONC to reduce administrative burdens may be helpful in this regard.

11. Physicians and other health care professionals should be appropriately compensated for the completion and maintenance of the clinical information that contributes to the dataset that permits production of the EIF. Payment could be received as part of a bundled payment for the care of CYSHCN. Similar to completion of school physical or camp physical forms, physicians and other health care professionals should be willing to assist patients with keeping emergency information up-to-date.

12. EIF completion and accessibility should be encouraged for patients and families regardless of background or health care payment source. Disadvantaged populations, including families with limited English proficiency and children in foster care, may be particularly likely to benefit from making critical health information readily available to teams providing emergency care. In this way, widespread EIF use may help to address inequities in health outcomes.

We thank Marvin B. Harper, MD, FAAP, Srinivasan Suresh, MD, FAAP, and Emily C. Webber, MD, FAAP, for their contributions to the policy statement.

James Callahan, MD, FAAP, FACEP Steve Baldwin, MD, FACEP Chelsea Bodnar, MD, MPhil, FAAP Susan Fuchs, MD, FAAP, FACEPSteven Krug, MD, FAAPCynthiana Lightfoot, EMT-PMordechai Raskas, MD, EdM, FAAPStuart Weinberg, MD, FAAP

Gregory Conners, MD, MPH, MBA, FAAP, ChairpersonJames Callahan, MD, FAAP, FACEPJavier Gonzalez del Rey, MD, MEd, FAAPToni Gross, MD, MPH, FAAPMadeline Joseph, MD, FAAPLois Lee, MD, MPH, FAAPElizabeth Mack, MD, MS, FAAPJennifer Marin, MD, MSc, FAAPSuzan Mazor, MD, FAAPRonald Paul, MD, FAAPNathan Timm, MD, FAAP

Ann Dietrich, MD – American College of Emergency PhysiciansAndrew Eisenberg, MD, MHA – American Academy of Family PhysiciansCynthia Wright Johnson, MSN, RN – National Association of State EMS OfficialsCynthiana Lightfoot, BFA, NRP – AAP Family Partnerships NetworkCharles Macias, MD, MPH, FAAP – EMSC Innovation and Improvement CenterBrian Moore, MD, MPH, FAAP – National Association of EMS PhysiciansDiane Pilkey, RN, MPH – Maternal and Child Health BureauKatherine Remick, MD, FAAP – National Association of Emergency Medical TechniciansMohsen Saidinejad, MD, MBA, FAAP, FACEP – American College of Emergency PhysiciansSally Snow, RN, BSN, CPEN, FAEN – Emergency Nurses AssociationMary Fallat, MD, FAAP – American College of Surgeons

Terry Adirim, MD, MPH, FAAPMichael S. D. Agus, MD, FAAPThomas Chun, MD, MPH, FAAPGregory Conners, MD, MPH, MBA, FAAPEdward Conway, Jr, MD, MS, FAAPNanette Dudley, MD, FAAPNatalie Lane, MD, FAAPCharles Macias, MD, MPH, FAAPPrashant Mahajan, MD, MPH, MBA, FAAPJoan Shook, MD, MBA, FAAP, Chair (2012–2016)Joseph Wright, MD, MPH, FAAP, Chair (2016–2020)

Sue Tellez

Steven Krug, MD, FAAP, ChairpersonSarita Chung, MD, FAAP, Vice ChairpersonCarl Baum, MD, FACMT, FAAPDeanna Dahl Grove, MD, FAAPDele Davies, MD, MS, MHCM, FAAPEric Dziuban, MD, DTM, CPH, FAAPAaron Gardner, MD, MS, FAAPStephanie Griese, MD, MPH, FAAPScott Needle, MD, FAAPDavid Schonfeld, MD, FAAPJoelle Simpson, MD, MPH, FAAP

Laura Aird, MS

Emily Chui Webber, MD, FAAP, ChairpersonSandy Lee Chung, MD, FAAPKevin Reid Dufendach, MD, MS, FAAPMarvin Bruce Harper, MD, FAAPBrandan P. Kennedy, MD, FAAPEli Matthew Lourie, MD, FAAPHeather C. O’Donnell, MD, FAAPReza Sadeghian, MD, MBA, MSc, FAAPEric Shelov, MD, MBI, FAAPSrinivasan Suresh, MD, MBA, FAAPAndrew Michael Wiesenthal, MD, SM, FAAPFrancis Dick-Wai Chan, MD, FAAP – Liaison to Section on Advances in Therapeutics and TechnologyHan Yu (Stephanie) Liou, MD – Liaison to Section on Pediatric Trainees

Gregg M. Alexander, DOEric L. Beyer, MD, FAAPAnne B. Francis, MD, FAAPAlexander M. Hamling, MD, MBA, FAAPEric G. Handler, MD, MPH, FAAPTimothy D. Johnson, DO, MMMEric Steven Kirkendall, MD, MBI, FAAPDonald E. Lighter II, MD, MBA, FAAPAnn M. Mann, MD, FAAPStephen James Morgan, MD, FAAPStuart T. Weinberg, MD, FAAPJeffrey Alan Wright, MD, FAAPDale Clark Alverson, MD, FAAP – former Liaison to Section on Telehealth CareMordechai Raskas, MD, EdM, FAAP – former Liaison to Section on Pediatric TraineesMelissa Sarah Van Cain, MD, FAAP – former Liaison to Section on Pediatric Trainees

Lisa Krams

Ann M. Dietrich, MD, ChairpersonKiyetta H. Alade, MDChristopher S. Amato, MDZaza Atanelov, MDMarc Auerbach, MDIsabel A. Barata, MD, FACEPLee S. Benjamin, MD, FACEPKathleen T. Berg, MDKathleen Brown, MD, FACEPCindy Chang, MDJessica Chow, MDCorrie E. Chumpitazi, MD, MS, FACEPIlene A. Claudius, MD, FACEPJoshua Easter, MDAshley Foster, MDSean M. Fox, MD, FACEPMarianne Gausche-Hill, MD, FACEPMichael J. Gerardi, MD, FACEPJeffrey M. Goodloe, MD, FACEP (Board Liaison)Melanie Heniff, MD, JD, FAAP, FACEPJames (Jim) L. Homme, MD, FACEPPaul T. Ishimine, MD, FACEPSusan D. John, MDMadeline M. Joseph, MD, FACEPSamuel Hiu-Fung Lam, MD, MPH, RDMS, FACEPSimone L. Lawson, MDMoon O. Lee, MD, FACEPJoyce Li, MDSophia D. Lin, MDDyllon Ivy Martini, MDLarry Bruce Mellick, MD, FACEPDonna Mendez, MDEmory M. Petrack, MD, FACEPLauren Rice, MDEmily A. Rose, MD, FACEPTimothy Ruttan, MD, FACEPMohsen Saidinejad, MD, MBA, FACEPGenevieve Santillanes, MD, FACEPJoelle N. Simpson, MD, MPH, FACEPShyam M. Sivasankar, MDDaniel Slubowski, MDAnnalise Sorrentino, MD, FACEPMichael J. Stoner, MD, FACEPCarmen D. Sulton, MD, FACEPJonathan H. Valente, MD, FACEPSamreen Vora, MD, FACEPJessica J. Wall, MDDina Wallin, MD, FACEPTheresa A. Walls, MD, MPHMuhammad Waseem, MD, MSDale P. Woolridge, MD, PhD, FACEP

Sam Shahid, MBBS, MPH

AAP

American Academy of Pediatrics

ACEP

American College of Emergency Physicians

APRN

advance practice registered nurse

CCD

continuity of care document

CCDS

common clinical data set

CMC

children with medical complexity

CYSHCN

children with special health care needs

EHR

electronic health record

EIF

emergency information form

EMS

emergency medical services

HIE

health information exchange

ONC

Office of the National Coordinator

PA

physician assistant

PHR

personal health record

USCDI

US Core Data for Interoperability