The American Academy of Pediatrics (AAP) Council on Clinical Information Technology (COCIT) was established in 2002. Today, COCIT is home to over 400 members and affiliate members of the AAP. Our mission is to advance the effective use and growth of information science and technology for child health through advocacy, education, and leadership. Our vision is that every infant, child, and adolescent in every venue will be cared for with health information technology that improves the quality of health care.
Members of the COCIT executive committee (with input from the larger membership group, through our listserv) reviewed over 200 articles published in Pediatrics in clinical informatics and selected 7 publications that highlight the growth and impact of our specialty. These span various areas of informatics, such as the evolution of the electronic health record, information storage and retrieval, safety in data transfer, and unique aspects of pediatric informatics.
Clinical Informatics Throughout the Years
Marvin B. Harper, MD, FAAP1, Lindsay Stevens, MD, FAAP2, Eli Lourie, MD, FAAP3, David Chartash, PhD4, Lisa Krams, MS5, Srinivasan Suresh, MD, MBA, FAAP6
1Department of Pediatrics, Harvard Medical School; Boston Children's Hospital; 2Department of Pediatrics, Stanford University School of Medicine; Stanford Medicine Children’s Health; 3Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania; Children’s Hospital of Philadelphia; 4School of Medicine, University College Dublin, National University of Ireland; 5American Academy of Pediatrics; 6Department of Pediatrics, University of Pittsburgh School of Medicine, UPMC Children’s Hospital of Pittsburgh
Highlighted Articles From Pediatrics
- Wessel MA. Excellent suggestion for transfer of medical information. Pediatrics. 1968;42(6):1013-1014
- Auld WT. Further suggestion on transfer of medical information. Pediatrics. 1968;42(6):1014
- Cunningham N. More on transfer of medical information. Pediatrics. 1969;43(4):639
- Task Force on Medical Informatics, Section on Computers and Other Technologies, Committee on Practice and Ambulatory Medicine. Safeguards needed in transfer of patient data. Pediatrics. 1996;98(5):984-986
- Spooner SA; Council on Clinical Information Technology. Special requirements of electronic health record systems in pediatrics. Pediatrics. 2007;119(3):631-637
- Webber EC, Brick D, Scibilia JP, Dehnel P; Council on Clinical Information Technology, Committee on Medical Liability and Risk Management, Section on Telehealth Care. Electronic communication of the health record and information with pediatric patients and their guardians. Pediatrics. 2019;144(1):e20191359
- Pageler NM, Webber EC, Lund DR. Implications of the 21st Century Cures Act in pediatrics. Pediatrics. 2021;147(3):e2020034199
In the early years of Pediatrics, computers and the practice of clinical informatics were not even glimmers in the eyes of pediatricians envisioning change. Yet the underlying concerns and issues now addressed by informatics were recognized. The importance of collecting, organizing, and protecting medical data, as well as providing that information in a manner that would be helpful to clinicians and patients, was already understood.
In a 1968 letter to the editor,1 Dr. Morris A. Wessel argued that the necessary transfer of patient information needs to be of high quality and requires patient and adolescent confidentiality in the medical record to be ensured. He argued that non-health care institutions, such as colleges or preparatory schools, needed established processes to ensure that only medical staff could access the personal physician’s confidential and detailed report. Dr. William T. Auld2 joined Dr. Wessel’s editorial, making the case for standardized, legible, and properly curated transfer of information. Furthermore, he argued that, for the generally healthy child, the mother could provide the AAP immunization record card—which was, in many ways, a precursor to vaccine registries and to the personal health record or patient portal. He also called for thoughtful transfer of care summaries and recognized that this would take the clinician “a few minutes to summarize the case and give the pertinent information concisely.” Responding to these letters, Dr. Nicholas Cunningham3 echoed a familiar concern: “since pediatricians are among the busiest (and least well remunerated) specialists, more than griping and pleading for better rapport will be needed to get results.” He argued for automated recording and reproduction of medical records. He reaffirmed the need for a medical record immediately available anywhere with confidentiality preserved. This preempts the significant strides that have been made since the days during which illegible bits of information were scribbled throughout the record without any evident structure. These commentaries emphasize that even without a formal established subspecialty, the goals of the field of clinical informatics have been salient discussion points since the beginning of the information age.
Our field moved from an era of scattered interest and engagement in pediatric clinical informatics to an era where the computer became a dominant force in the home (and in the next decade in medicine). In a landmark report titled “Safeguards Needed in Transfer of Electronic Data,” the Task Force on Medical Informatics and Section on Computers and Other Technologies4 (precursor bodies to the COCIT) discussed the importance of confidentiality with the advent of electronic medical records. This seems obvious now, but it required organizations such as the AAP to champion its importance during the passing of the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Today, we take for granted that our data will be protected both at rest and in transit. We have seen many improvements, yet we have entered a new era of organized cyber threats that include hacking and ransomware. This report stated that “every pediatric practice should establish policies and procedures that protect the patient’s record. Only those providers with a need to know specific medical information should be granted access to patient information, and that access should be limited to those portions of the patient’s medical file that pertain to the provider’s particular function.” Pediatricians kept up with the ensuing technology. Although it seems quaint today to spend so much time on how best to send a telefax and how to securely locate a facsimile machine within the office, the core clinical informatics principles of confidentiality and rights have remained a focus of supporting pediatricians and protecting patients. This is no more salient an issue in the increasingly connected world, where we must be wary of cyber threats and build and maintain guidelines for secondary data use by insurers, marketers, the pharmaceutical industry, and others—keeping in mind the possibility of patient re-identification from de-identified data.
After the 1990s, as the electronic health record (EHR) was developing and became commonplace, it became clear that features needed for pediatric care were not being adequately addressed by vendors whose primary customer base cared for adult patients. The AAP clinical report “Special Requirements for Electronic Health Record Systems in Pediatrics” was a call to “stimulate electronic health record system vendors to recognize and incorporate pediatric functionality into pediatric electronic health record systems” and to delineate specific areas for improvement prioritized by importance for pediatricians and children.5 This report has served as a touchstone for discussions with vendors and legislators, and within the informatics community. As the EHR continues to evolve, pediatricians have led the way in shaping the technology and its implementation.
In 2019, the AAP published a policy statement outlining challenges that have arisen with the ubiquitous deployment of the EHR.6 This statement discussed ownership and stewardship of data, as well as the appropriate transmission of those data to pediatric patients and their guardians when there may be limited sharing and blocking functionalities within the EHR. The statement additionally highlighted difficulties related to variable, changing, vague, or ambiguous definitions of the health record, age of maturity, and specific state-by-state regulations related to what can or cannot be disclosed to the patient or guardian. The recommendations made in this statement have become even more pertinent as pediatricians and their patients have shifted to hybrid digital practice since the start of the COVID-19 pandemic.
In 2021, Dr. Natalie Pageler et al authored a perspective piece contextualizing the current needs of pediatric practices with implementation of the final rule of the 21st Century Cures Act of 2016.7 The authors laud the concept of the legislation but point out the lack of sufficient safeguards (legal and technical) to protect pediatric and adolescent “health data from being inappropriately exposed or shared in ways that can compromise their privacy and even their safety.” New challenges on the horizon, such as the 21st Century Cures Act Final Rule, the ubiquity of hybrid digital practice, and the increasing implementation of patient portals offer opportunities for pediatricians and Pediatrics to address those same goals for patients of the nascent pediatric clinical informatics first broached by Drs. Wessel, Auld and Cunningham in the journal.
The Diamond Jubilee of Pediatrics offers an opportunity to spotlight how pediatricians have commented and contributed to the journal on the challenges in using and deploying information technology. Recent commentaries in Pediatrics have pointed out the important interplay between technical, social, and legislative issues to be addressed. These include access, control, and security of patient data with a cogent framework to ensure adequate multitiered data confidentiality. We must remember that our overall objective is to provide sufficient data liquidity and data sharing to improve the lives of patients and their guardians across the continuum of activities and care encounters. Looking back not only shows us how far we have come, but also brings into focus that there is still a long way to go.
References
- Wessel MA. Excellent suggestion for transfer of medical information. Pediatrics. 1968;42(6):1013-1014
- Auld WT. Further suggestion on transfer of medical information. Pediatrics. 1968;42(6):1014
- Cunningham N. More on transfer of medical information. Pediatrics. 1969;43(4):639
- Task Force on Medical Informatics, Section on Computers and Other Technologies, Committee on Practice and Ambulatory Medicine. Safeguards needed in transfer of patient data. Pediatrics. 1996;98(5):984-986
- Spooner SA; Council on Clinical Information Technology. Special requirements of electronic health record systems in pediatrics. Pediatrics. 2007;119(3):631-637
- Webber EC, Brick D, Scibilia JP, Dehnel P; Council on Clinical Information Technology, Committee on Medical Liability and Risk Management, Section on Telehealth Care. Electronic communication of the health record and information with pediatric patients and their guardians. Pediatrics. 2019;144(1):e20191359
- Pageler NM, Webber EC, Lund DR. Implications of the 21st Century Cures Act in pediatrics. Pediatrics. 2021;147(3):e2020034199
