Shifting into Action: from Data Segmentation to Equitable Interoperability for Adolescents (and Everyone Else).

BACKGROUND: Technological improvements and, subsequently, the federal 21st Century Cures Act have resulted in increased access to and interoperability of electronic protected health information (ePHI). These not only have many benefits, but also have created unique challenges for privacy and confidentiality for adolescent patients. The inability to granularly protect sensitive data and a lack of standards have resulted in limited confidentiality protection and inequitable access to health information. OBJECTIVES: This study aimed to understand the challenges to safe, equitable access, and interoperability of ePHI for adolescents and to identify strategies that have been developed, ongoing needs, and work in progress. METHODS: Shift, a national task force formalized in 2020, is a group of more than 200 expert stakeholder members working to improve functionality to standardize efforts to granularly identify and protect sensitive ePHI to promote equitable interoperability. RESULTS: Shift has created high-priority clinical use cases and organized challenges into the areas of Standards and Terminology; Usability and Implementation; and Ethics, Legal, and Policy. CONCLUSION: Current technical standards and value sets of terminology for sensitive data have been immature and inconsistent. Shift, a national diverse working group of stakeholders, is addressing challenges inherent in the protection of privacy and confidentiality for adolescent patients. The diversity of expertise and perspectives has been essential to identify and address these challenges.

Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019.

OBJECTIVES: To survey international regulatory frameworks that serve to protect privacy of personal data as a human right as well as to review the literature regarding privacy protections and data ownership in mobile health (mHealth) technologies between January 1, 2016 and June 1, 2019 in order to identify common themes. METHODS: We performed a review of relevant literature available in English published between January 1, 2016 and June 1, 2019 from databases including PubMed, Google Scholar, and Web of Science, as well as relevant legislative background material. Articles out of scope (as detailed below) were eliminated. We categorized the remaining pool of articles and discrete themes were identified, specifically: concerns around data transmission and storage, including data ownership and the ability to re-identify previously de-identified data; issues with user consent (including the availability of appropriate privacy policies) and access control; and the changing culture and variable global attitudes toward privacy of health data. RESULTS: Recent literature demonstrates that the security of mHealth data storage and transmission remains of wide concern, and aggregated data that were previously considered "de-identified" have now been demonstrated to be re-identifiable. Consumer-informed consent may be lacking with regard to mHealth applications due to the absence of a privacy policy and/or to text that is too complex and lengthy for most users to comprehend. The literature surveyed emphasizes improved access control strategies. This survey also illustrates a wide variety of global user perceptions regarding health data privacy. CONCLUSION: The international regulatory framework that serves to protect privacy of personal data as a human right is diverse. Given the challenges legislators face to keep up with rapidly advancing technology, we introduce the concept of a "healthcare fiduciary" to serve the best interest of data subjects in the current environment.

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System.

Authentic inclusion and engagement of behavioral health patients in their care delivery and in the process of scientific discovery are often challenged in the health care system. Consequently, there is a growing need to engage with and better serve the needs of behavioral health patients, particularly by leveraging health information technologies. In this work, we present rationale and strategies for improving patient engagement in this population in research and clinical care. First, we describe the potential for creating meaningful patient-investigator partnerships in behavioral health research to allow for cocreation of knowledge with patients. Second, in the context of behavioral health services, we explore the utility of sharing clinical notes to promote patients' agency in care delivery. Both lines of inquiry are centered in a Learning Health System model for behavioral health, where patients are agents in enhancing the therapeutic alliance and advancing the process of knowledge generation. Recommendations include genuinely democratizing the health care system and biomedical research enterprise through patient-centered information technologies such as patient portals. In research and technology development, we recommend seeking and tailoring behavioral health patients' involvement to their abilities, promoting patient input in data analysis plans, evaluating research and informatics initiatives for patients and clinicians, and sharing success and research findings with patients. In clinical practice, we recommend encouraging patients to read behavioral health notes on portals, engaging in proactive communication regarding note content, assessing outcomes including stress and anxiety in response to note content, and working with technology providers to support note-sharing governance and deployment.

Aortic calcification on plain chest radiography increases risk for coronary artery disease.

STUDY OBJECTIVES: To determine whether an association exists between aortic calcification viewed on plain chest radiography and coronary artery disease. METHODS: Retrospective review of all chest radiographs obtained from consecutive patients undergoing coronary angiography at a primary cardiac center during 1999. Plain chest radiographs were reviewed by blinded radiologists, and interobserver consistency was measured. The presence or absence of aortic arch calcification was abstracted and compared with the results of coronary angiography. RESULTS: Of 654 cases, 329 of 360 patients with aortic arch calcification vs. 241 of 294 patients without aortic arch calcification had coronary artery disease demonstrated on angiography. The 9% absolute difference in proportions was significant (p = 0.0003). The relative risk (measured by risk ratio) was 1.11 (95% confidence interval, 1.05 to 1.19). CONCLUSION: Several objective signs (e.g., hypertension, hyperlipidemia, and ECG changes) have been associated previously with the presence of coronary artery disease. This study further suggests an association between coronary disease and aortic arch calcification on plain chest radiography. These results may assist primary-care providers performing routine health assessments as well as emergency practitioners evaluating patients with potential angina.

Update on Munchausen syndrome by proxy.

PURPOSE OF REVIEW: Munchausen syndrome by proxy (MBP) is a complicated form of child maltreatment. Difficulties remain in properly defining the condition, as well as in detection and differentiation from organic illness. This review will discuss the epidemiology and diagnosis of MBP, as well as the role of the physician in sorting out these cases. RECENT FINDINGS: Several recent case studies, including two in which children were diagnosed with celiac disease, add to our knowledge of the protean manifestations of MBP. There is growth in our understanding of how sudden infant death syndrome (SIDS) and the symptom complex seen in acute life-threatening events (ALTEs) may in fact represent manifestations of MBP. Recent legal issues in the United Kingdom pose concern for all physicians engaged in child protection work. SUMMARY: In spite of these challenges, the high mortality and recidivism rates associated with MBP make it imperative that pediatricians be familiar with the condition, the subtle signs and symptoms with which it may present, and methods to best protect the children in their care.

The "prudent layperson" definition of an emergency medical condition.

The study objectives, based on federal and state legislative language, were to objectively define symptoms and signs commonly agreed on by "prudent laypersons" as "emergency medical conditions." After comprehensive tabulation of symptom classifications from the International Classification of Diseases (ICD-9), we performed a survey of nonmedical laypersons. Data analysis included descriptive statistics, proportional calculations, and 95% confidence intervals. A minority of symptoms and signs (25/87, 29%) were considered emergency medical conditions by more than half of nonmedical survey respondents who were self-defined as prudent laypersons. The leading conditions deemed emergencies were loss of consciousness, seizure, no recognition of one side of the body, paralysis, shock, gangrene, coughing blood, trouble breathing, chest pain, and choking. Pain, except for renal colic or chest pain, was not considered an emergency. No symptoms or signs specifically related to gynecologic disorders were considered emergencies. Most symptoms and signs tabulated in the diagnostic coding manual, ICD-9, are not considered emergency medical conditions by self-designated prudent laypersons. These include many conditions that are commonly investigated and treated in the emergency department setting. Use of the prudent layperson standard for reimbursable emergency health services may not reflect the actual scope of symptoms necessitating emergency care.