Notes at your fingertips: Open note considerations regarding pediatric and adolescent care

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The clinician's note serves an increasing number of audiences, the most recent addition being the patient and, in the case of pediatrics, the parent/guardian. The early work of the OpenNotes initiative followed by the recently enacted 21st Century Cures Act Information Blocking Rule has mandated easy and timely electronic access to notes involving their clinical care. While many benefits have already been described and most drawbacks unrealized, the care of pediatric and adolescent patients brings unique challenges to enable this functionality while preserving patient, parent, and family confidentiality. Given statewide variability in affording these protections, there remains a technological gap in uniformly assisting clinicians to do the right thing while remaining compliant with the law. More research is needed on the impact and new workflow considerations for using an open notes approach across care settings and within academic institutions. Additional education and training are needed to adapt note writing to accommodate patient understanding and encourage patient engagement while conveying the complexity of medical decision making. As transparency and shared medical decision-making become more prevalent within medicine, clinicians’ communication and documentation styles need to evolve to meet that challenge.

Section snippets

Background

The clinician's note is continually expanding its purpose and audience.1,2 What was originally developed to serve as a reminder of a patient's unique medical history and features, differential diagnosis reflections, and disease management approaches for the care team3 has expanded to serve the nonclinical needs of payers, quality monitors, and administrators.4 The recent OpenNotes5 movement and subsequent access expansion via the 21st Century Cures Act Information Blocking Rule (21CCA) is

Benefits and drawbacks

Even though the Health Insurance Portability and Accountability Act enables patients to legally access their medical records, the process was often cumbersome and costly.17 The OpenNotes initiative, launched in 2010, demonstrated that providing unprecedented and timely access to notes has many benefits.1,7,12 Documented benefits include improved medication adherence, patients’ increased sense of control and trust, and enhanced patient engagement.12,18, 19, 20, 21 The latter may be the most

Privacy and confidentiality

There is notable state law variability surrounding an adolescent's confidentiality related to consent for reproductive, sexual, and mental health care.

25,26 Professional guidelines have been established that recommend continued education and vigilance regarding the shortcomings of technology ensuring patient privacy.27 The issue is further complicated by healthcare insurance laws where legally protected confidential health information is required to be released to the primary

Technical limitations of personal health records (PHRs) and electronic health records (EHRs)

Prior to open notes, increased access to personal health records (PHRs) accelerated the discussion surrounding adolescent and pediatric privacy and confidentiality.15 Considerations for what should be made available to the patient and/or parent/guardian have been predetermined to some extent based on an adolescent's legal right to consent to their own healthcare regarding sexual and reproductive health in addition to substance abuse and mental health.14

However, technical limitations exist

Care settings

To date, the concept of open notes has largely been studied in the ambulatory setting with few institutions closing the gap to cover hospital-based care.

24,32 Arguably outpatient acute care and inpatient settings present unique obstacles. For example, in the acute care setting of an urgent care or emergency department there is rarely continuity for the patient-clinician relationship. If a patient has a question or concern about the content of the urgent care/emergency department

Training institutions

Academic medical centers provide yet another complexity to open notes.

2 Historically, the medical student or trainee note was an opportunity to learn and a commitment to uncertainty – documenting one's interpretation of the physical exam or differential diagnosis musings that were often incorrect. This has the potential to be confusing to patients if conflicting information is documented by experienced clinicians. Patients and families may also not appreciate the natural evolution

Discussion

The historical patient-clinician walls are being broken down as this important relationship continues to transition from paternalistic to active collaboration and shared decision-making.1,7 Open notes are a reflection of this movement in addition to patient portals and legislation mandating easy access and ownership of one's own healthcare data. Many have struggled with the conceptual ‘one-size-fits-all’ note catering to diverse audiences.1 The recent mandate to enable open notes nationwide

Declaration of Competing Interest

No conflict of interest to report

Funding Source

None

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