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.

Sharing Clinical Notes while Protecting Adolescent Confidentiality and Maintaining Parental Insight.

BACKGROUND: The 21st Century Cures Act mandates sharing electronic health records (EHRs) with patients. Health care providers must ensure confidential sharing of medical information with adolescents while maintaining parental insight into adolescent health. Given variability in state laws, provider opinions, EHR systems, and technological limitations, consensus on best practices to achieve adolescent clinical note sharing at scale is needed. OBJECTIVES: This study aimed to identify an effective intervention process to implement adolescent clinical note sharing, including ensuring adolescent portal account registration accuracy, across a large multihospital health care system comprising inpatient, emergency, and ambulatory settings. METHODS: A query was built to assess portal account registration accuracy. At a large multihospital health care system, 80.0% of 12- to 17-year-old patient portal accounts were classified as inaccurately registered (IR) under a parent or registration accuracy unknown (RAU). To increase accurately registered (AR) accounts, the following interventions were pursued: (1) distribution of standardized portal enrollment training; (2) patient outreach email campaign to reregister 29,599 portal accounts; (3) restriction of access to remaining IR and RAU accounts. Proxy portal configurations were also optimized. Subsequently, adolescent clinical note sharing was implemented. RESULTS: Distribution of standardized training materials decreased IR and increased AR accounts (p = 0.0492 and 0.0058, respectively). Our email campaign (response rate: 26.8%) was most effective in decreasing IR and RAU accounts and increasing AR accounts (p < 0.002 for all categories). Remaining IR and RAU accounts, 54.6% of adolescent portal accounts, were subsequently restricted. Postrestriction, IR accounts continued declining significantly (p = 0.0056). Proxy portal enhancements with interventions deployed increased proxy portal account adoption. CONCLUSION: A multistep intervention process can be utilized to effectively implement adolescent clinical note sharing at a large scale across care settings. Improvements to EHR technology, portal enrollment training, adolescent/proxy portal settings, detection, and automation in reenrollment of inaccurate portal accounts are needed to maintain integrity of adolescent portal access.

Returning study results to research participants: Data access, format, and sharing preferences.

INTRODUCTION: Research participants have a growing expectation for transparency with their collected information; however, there is little guidance on participant preferences for receiving health information and how researchers should return this information to participants. METHODS: We conducted a cross-sectional online survey with a representative sample of 502 participants in the United States. Participants were asked about their preferences for receiving, sharing, and the formatting of health information collected for research purposes. RESULTS: Most participants wanted their health information returned (84 %) to use it for their own knowledge and to manage their own health. Email was the most preferred format for receiving health data (67 %), followed by online website (44 %), and/or paper copy (32 %). Data format preferences varied by age, education, financial resources, subjective numeracy, and health literacy. Around one third of Generation Z (25 %), Millennials (30 %), and Generation X (29 %) participants preferred to receive their health information with a mobile app. In contrast, very few Baby Boomers (12 %) and none from the Silent Generation preferred the mobile app format. Having a paper copy of the data was preferred by 38 % of participants without a college degree compared to those with a college degree. Preferences were highest for sharing all health information with doctors and nurses (77 %), and some information with friends and family (66 %). CONCLUSION: Study findings support returning research information to participants in multiple formats, including email, online websites, and paper copy. Preferences for whom to share information with varied by stakeholders and by sociodemographic characteristics. Researchers should offer multiple formats to participants and tailor data sharing options to participants' preferences. Future research should further explore combinations of individual characteristics that may further influence data sharing and format preferences.

State-by-State Variability in Adolescent Privacy Laws.

OBJECTIVES: Health care providers managing the complex health needs of adolescents must comply with state laws governing adolescent consent and right to privacy. However, these laws vary. Our objectives were to summarize consent and privacy laws state-by-state and assess the implications of variation for compliance with the 21st Century Cures Act and with evidence-based guidance on adolescent care. METHODS: We summarized state laws and regulations on minor consent for the following: health services, substance abuse treatment, prenatal care, mental health care, contraceptive management, immunizations, sexually transmitted infection management, human immunodeficiency viruses testing and treatment, dental care, and sexual assault evaluation. We compared state laws and regulations with American Academy of Pediatrics' evidence-based guidelines to assess consistencies in guidance. RESULTS: We observed notable state-by-state variability in laws governing consent for adolescent patients. No states had identical policies for all services studied. For example, although all states had provisions for consent to management of sexually transmitted infections, there were variable specifications in the age and type of minor, whether this includes human immunodeficiency viruses, and whether confidentiality is protected. Providing confidential care to the adolescent patient has been set as a priority by medical societies; however, guidelines are limited by the need to comply with state laws and regulations. CONCLUSIONS: State laws on consent and privacy for adolescents are highly variable, and many do not reflect pediatric professional standards of care. This inconsistency is a barrier to operationalizing a consistent and equitable experience providing evidence-based medical care and ensuring adolescent privacy protection.

Strategies to optimize comprehension of numerical medication instructions: A systematic review and concept map.

OBJECTIVE: To develop evidence-based recommendations for improving comprehension of quantitative medication instructions. METHODS: This review included a literature search from inception to November 2021. Studies were included for the following: 1) original research; 2) compared multiple formats for presenting quantitative medication information on dose, frequency, and/or time; 3) included patients/lay-people; 4) assessed comprehension-related outcomes quantitatively. To classify the studies, we developed a concept map. We weighed 3 factors (risk of bias in individual studies, consistency of findings among studies, and homogeneity of the interventions tested) to generate 3 levels of recommendations. RESULTS: Twenty-one studies were included. Level 1 recommendations are: 1) use visualizations of medication doses for liquid medications, and 2) express instructions in time-periods rather than times per day. Level 2 recommendations include: validate icons, use panels or tables with explanatory text, use visualizations for non-English speaking populations and for those with low health literacy and limited English proficiency. CONCLUSIONS: Visualized liquid medication doses and time period-based administration instructions improve comprehension of numerical medication instructions. Use of visualizations for those with limited health literacy and English proficiency could result in improved outcomes. PRACTICE IMPLICATIONS: Practitioners should use visualizations for liquid medication instructions and time period-based instructions to improve outcomes.

Imprecision and Preferences in Interpretation of Verbal Probabilities in Health: a Systematic Review.

INTRODUCTION: Many health providers and communicators who are concerned that patients will not understand numbers instead use verbal probabilities (e.g., terms such as "rare" or "common") to convey the gist of a health message. OBJECTIVE: To assess patient interpretation of and preferences for verbal probability information in health contexts. METHODS: We conducted a systematic review of literature published through September 2020. Original studies conducted in English with samples representative of lay populations were included if they assessed health-related information and elicited either (a) numerical estimates of verbal probability terms or (b) preferences for verbal vs. quantitative risk information. RESULTS: We identified 33 original studies that referenced 145 verbal probability terms, 45 of which were included in at least two studies and 19 in three or more. Numerical interpretations of each verbal term were extremely variable. For example, average interpretations of the term "rare" ranged from 7 to 21%, and for "common," the range was 34 to 71%. In a subset of 9 studies, lay estimates of verbal probability terms were far higher than the standard interpretations established by the European Commission for drug labels. In 10 of 12 samples where preferences were elicited, most participants preferred numerical information, alone or in combination with verbal labels. CONCLUSION: Numerical interpretation of verbal probabilities is extremely variable and does not correspond well to the numerical probabilities established by expert panels. Most patients appear to prefer quantitative risk information, alone or in combination with verbal labels. Health professionals should be aware that avoiding numeric information to describe risks may not match patient preferences, and that patients interpret verbal risk terms in a highly variable way.

Assessing the impact of social determinants of health on predictive models for potentially avoidable 30-day readmission or death.

OBJECTIVES: Early hospital readmissions or deaths are key healthcare quality measures in pay-for-performance programs. Predictive models could identify patients at higher risk of readmission or death and target interventions. However, existing models usually do not incorporate social determinants of health (SDH) information, although this information is of great importance to address health disparities related to social risk factors. The objective of this study is to examine the impact of social determinants of health on predictive models for potentially avoidable 30-day readmission. METHODS: We extracted electronic health record data for 19,941 hospital admissions between January 2015 and November 2017 at an academic medical center in New York City. We applied the Simplified HOSPITAL score model to predict potentially avoidable 30-day readmission or death and examined if incorporating individual- and community-level SDH could improve the prediction using cross-validation. We calculated the C-statistic for discrimination, Brier score for accuracy, and Hosmer-Lemeshow test for calibration for each model using logistic regression. Analysis was conducted for all patients and three subgroups that may be disproportionately affected by social risk factors, namely Medicaid patients, patients who are 65 or older, and obese patients. RESULTS: The Simplified HOSPITAL score model achieved similar performance in our sample compared to previous studies. Adding SDH did not improve the prediction among all patients. However, adding individual- and community-level SDH at the US census tract level significantly improved the prediction for all three subgroups. Specifically, C-statistics improved from 0.70 to 0.73 for Medicaid patients, from 0.66 to 0.68 for patients 65 or older, and from 0.70 to 0.73 for obese patients. CONCLUSIONS: Patients from certain subgroups may be more likely to be affected by social risk factors. Incorporating SDH into predictive models may be helpful to identify these patients and reduce health disparities associated with vulnerable social conditions.

Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.

Objective: Parents routinely access young children's medical records, but medical societies strongly recommend confidential care during adolescence, and most medical centers restrict parental records access during the teen years. We sought to assess public opinion about adolescent medical privacy. Materials and Methods: The Cornell National Social Survey (CNSS) is an annual nationwide public opinion survey. We added questions about a) whether parents should be able to see their 16-year-old child's medical record, and b) whether teens would avoid discussing sensitive issues (sex, alcohol) with doctors if parents could see the record. Hypothesizing that highlighting the rationale for adolescent privacy would change opinions, we conducted an experiment by randomizing question order. Results: Most respondents (83.0%) believed that an adolescent would be less likely to discuss sensitive issues with doctors with parental medical record access; responses did not differ by question order (P = .29). Most also believed that parents should have access to teens' records, but support for parental access fell from 77% to 69% among those asked the teen withholding question first (P = .01). Conclusions: Although medical societies recommend confidential care for adolescents, public opinion is largely in favor of parental access. A brief "nudge," asking whether parental access might harm adolescent-doctor communication, increased acceptance of adolescent confidentiality, and could be part of a strategy to prepare parents for electronic patient portal policies that medical centers impose at the beginning of adolescence.

Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process.

Objective: Medical privacy policies, which are clear-cut for adults and young children, become ambiguous during adolescence. Yet medical organizations must establish unambiguous rules about patient and parental access to electronic patient portals. We conducted a national interview study to characterize the diversity in adolescent portal policies across a range of institutions and determine the factors influencing decisions about these policies. Methods: Within a sampling framework that ensured diversity of geography and medical organization type, we used purposive and snowball sampling to identify key informants. Semi-structured interviews were conducted and analyzed with inductive thematic analysis, followed by a member check. Results: We interviewed informants from 25 medical organizations. Policies established different degrees of adolescent access (from none to partial to complete), access ages (from 10 to 18 years), degrees of parental access, and types of information considered sensitive. Federal and state law did not dominate policy decisions. Other factors in the decision process were: technology capabilities; differing patient population needs; resources; community expectations; balance between information access and privacy; balance between promoting autonomy and promoting family shared decision-making; and tension between teen privacy and parental preferences. Some informants believed that clearer standards would simplify policy-making; others worried that standards could restrict high-quality polices. Conclusions: In the absence of universally accepted standards, medical organizations typically undergo an arduous decision-making process to develop teen portal policies, weighing legal, economic, social, clinical, and technological factors. As a result, portal access policies are highly inconsistent across the United States and within individual states.

The need for guidance and consistency in adolescent privacy policies: a survey of CMIOs.

Research examining whether and how adolescent patients should gain access to their electronic health records is gaining momentum. We conducted a survey to explore diversity in adolescent privacy policies and identify common approaches in health information technology management for adolescent patients. Through descriptive analyses of survey data, we found a wide range of institutional policies regarding adolescent patient privacy, and large variations in health IT executives' baseline knowledge of access policies. A majority of respondents agreed that formal guidelines pertaining to adolescent health record privacy would be helpful. Respondents suggested that these guidelines can be developed through the synthesis of multiple perspectives, including those of pediatricians, adolescent specialists, privacy experts, parents, patient advocates, and other professional entities.