Health Literacy 2030: Is It Time to Redefine the Term?

For decades, health literacy has been used to describe the ability of individuals to locate, interpret, and apply health information to their decisions. The US Department of Health and Human Services has now proposed redefining the term to emphasize the role of society in providing accessible, comprehensible information. This redefinition would reflect a welcome shift to encompass the roles of those who communicate information, not simply those who seek it. However, redefining an accepted term would have serious negative effects on the indexing of the research literature and create difficulties interpreting studies conducted under the previous definition. Therefore, we strongly caution against redefining the accepted term. Instead, we propose introducing a new term-health information fluency-defined as universal effective use of health information. The old term can continue to be used to describe the set of concerns about individual skills, but by promoting the new term, the Department of Health and Human Services can encourage research into creating accurate, accessible health information that people can easily find, understand, and use to inform their decisions.

A method for harmonization of clinical abbreviation and acronym sense inventories.

BACKGROUND: Previous research has developed methods to construct acronym sense inventories from a single institutional corpus. Although beneficial, a sense inventory constructed from a single institutional corpus is not generalizable, because acronyms from different geographic regions and medical specialties vary greatly. OBJECTIVE: Develop an automated method to harmonize sense inventories from different regions and specialties towards the development of a comprehensive inventory. METHODS: The method involves integrating multiple source sense inventories into one centralized inventory and cross-mapping redundant entries to establish synonymy. To evaluate our method, we integrated 8 well-known source inventories into one comprehensive inventory (or metathesaurus). For both the metathesaurus and its sources, we evaluated the coverage of acronyms and their senses on a corpus of 1 million clinical notes. The corpus came from a different institution, region, and specialty than the source inventories. RESULTS: In the evaluation using clinical notes, the metathesaurus demonstrated an acronym (short form) micro-coverage of 94.3%, representing a substantial increase over the two next largest source inventories, the UMLS LRABR (74.8%) and ADAM (68.0%). The metathesaurus demonstrated a sense (long form) micro-coverage of 99.6%, again a substantial increase compared to the UMLS LRABR (82.5%) and ADAM (55.4%). CONCLUSIONS: Given the high coverage, harmonizing acronym sense inventories is a promising methodology to improve their comprehensiveness. Our method is automated, leverages the extensive resources already devoted to developing institution-specific inventories in the United States, and may help generalize sense inventories to institutions who lack the resources to develop them. Future work should address quality issues in source inventories and explore additional approaches to establishing synonymy.

Correlates of Mental Health Symptoms Among US Adults During COVID-19, March-April 2020.

OBJECTIVES: An understanding of mental health symptoms during the coronavirus disease 2019 (COVID-19) pandemic is critical to ensure that health policies adequately address the mental health needs of people in the United States. The objective of this study was to examine mental health symptoms among US adults in an early stage of the COVID-19 pandemic. METHODS: We conducted a cross-sectional study in late March 2020 with a national sample of 963 US adults using an online research platform. Participants self-reported state of residence, psychosocial characteristics, and levels of anxiety, depression, anger, cognitive function, and fatigue in the context of COVID-19 using validated patient-reported outcomes scales in the Patient-Reported Outcome Measurement Information System measures. We used analysis of variance and multivariate linear regression to evaluate correlates of mental health symptoms. RESULTS: Overall, participants reported high levels of anxiety (mean [SD], 57.2 [9.3]) and depression (mean [SD], 54.2 [9.5]). Levels of anger, anxiety, cognitive function, depression, and fatigue were significantly higher among the Millennial Generation and Generation X (vs Baby Boomers), those with not enough or enough (vs more than enough) financial resources, females vs males), those with self-reported disability (vs no self-reported disability), and those with inadequate (vs adequate) health literacy. In adjusted models, being in Generation X and the Millennial Generation (vs Baby Boomer), having not enough or enough vs more than enough) financial resources, and having inadequate (vs adequate) health literacy were most strongly correlated with worse mental health symptoms. CONCLUSIONS: Results suggest that mental health symptoms during the early stages of the COVID-19 pandemic were prevalent nationally, regardless of state of residence and especially among young, psychosocially vulnerable groups.

Understanding the nature and scope of clinical research commentaries in PubMed.

Scientific commentaries are expected to play an important role in evidence appraisal, but it is unknown whether this expectation has been fulfilled. This study aims to better understand the role of scientific commentary in evidence appraisal. We queried PubMed for all clinical research articles with accompanying comments and extracted corresponding metadata. Five percent of clinical research studies (N = 130 629) received postpublication comments (N = 171 556), resulting in 178 882 comment-article pairings, with 90% published in the same journal. We obtained 5197 full-text comments for topic modeling and exploratory sentiment analysis. Topics were generally disease specific with only a few topics relevant to the appraisal of studies, which were highly prevalent in letters. Of a random sample of 518 full-text comments, 67% had a supportive tone. Based on our results, published commentary, with the exception of letters, most often highlight or endorse previous publications rather than serve as a prominent mechanism for critical appraisal.

Visual analogies, not graphs, increase patients' comprehension of changes in their health status.

OBJECTIVES: Patients increasingly use patient-reported outcomes (PROs) to self-monitor their health status. Visualizing PROs longitudinally (over time) could help patients interpret and contextualize their PROs. The study sought to assess hospitalized patients' objective comprehension (primary outcome) of text-only, non-graph, and graph visualizations that display longitudinal PROs. MATERIALS AND METHODS: We conducted a clinical research study in 40 hospitalized patients comparing 4 visualization conditions: (1) text-only, (2) text plus visual analogy, (3) text plus number line, and (4) text plus line graph. Each participant viewed every condition, and we used counterbalancing (systematic randomization) to control for potential order effects. We assessed objective comprehension using the International Organization for Standardization protocol. Secondary outcomes included response times, preferences, risk perceptions, and behavioral intentions. RESULTS: Overall, 63% correctly comprehended the text-only condition and 60% comprehended the line graph condition, compared with 83% for the visual analogy and 70% for the number line (P = .05) conditions. Participants comprehended the visual analogy significantly better than the text-only (P = .02) and line graph (P = .02) conditions. Of participants who comprehended at least 1 condition, 14% preferred a condition that they did not comprehend. Low comprehension was associated with worse cognition (P < .001), lower education level (P = .02), and fewer financial resources (P = .03). CONCLUSIONS: The results support using visual analogies rather than text to display longitudinal PROs but caution against relying on graphs, which is consistent with the known high prevalence of inadequate graph literacy. The discrepancies between comprehension and preferences suggest factors other than comprehension influence preferences, and that future researchers should assess comprehension rather than preferences to guide presentation decisions.

Older Adults Can Successfully Monitor Symptoms Using an Inclusively Designed Mobile Application.

OBJECTIVES: Patient-Reported Outcomes Measurement Information System (PROMIS) measures can monitor patients with chronic illnesses outside of healthcare settings. Unfortunately, few applications that collect electronic PROMIS measures are designed using inclusive design principles that ensure wide accessibility and usability, thus limiting use by older adults with chronic illnesses. Our aim was to establish the feasibility of using an inclusively designed mobile application tailored to older adults to report PROMIS measures by examining (1) PROMIS scores collected with the application, (2) patient-reported usability of the application, and (3) differences in usability by age. DESIGN: Cross-sectional feasibility study. SETTING: Inpatient and outpatient cardiac units at an urban academic medical center. PARTICIPANTS: A total of 168 English- and Spanish-speaking older adults with heart failure. INTERVENTION: Participants used an inclusively designed mobile application to self-report PROMIS measures. MEASUREMENTS: Eleven PROMIS Short-Form questionnaires (Anxiety, Ability to Participate in Social Roles and Activities, Applied Cognition-Abilities, Depression, Emotional Distress-Anger, Fatigue, Global Mental Health, Global Physical Health; Pain Interference, Physical Function, Sleep Disturbance), and a validated health technology usability survey measuring Perceived Ease-of-Use and Usefulness of the application. RESULTS: Overall, 27% of participants were between 65 and 74 years of age, 10% were 75 years or older, 63% were male, 32% were white, and 96% had two or more medical conditions. There was no missing PROMIS data, and mean PROMIS scores showed the greatest burden of pain, fatigue, and physical function in the sample. Usability scores were high and not associated with age (Perceived Ease-of-Use P = .77; Perceived Usefulness P = .91). CONCLUSION: It is feasible for older adults to use an inclusively designed application to report complete PROMIS data with high perceived usability. To ensure data completeness and the opportunity to study multiple domains of physical, mental, and social health, future work should use inclusive design principles for applications collecting PROMIS measures among older adults. J Am Geriatr Soc 68:1313-1318, 2020.

Measuring health status and symptom burden using a web-based mHealth application in patients with heart failure.

BACKGROUND: Symptoms of heart failure markedly impair a patient's health status. The aim of this study was to identify predictors of health status in a sample of racially and ethnically diverse patients with heart failure using a web-based mobile health application, mi.Symptoms. METHODS: We conducted a cross-sectional study at an urban academic medical center. Patients with heart failure self-reported symptoms using validated symptom instruments (e.g. patient-reported outcome measurement information system) by way of the mobile health application, mi.Symptoms. The primary study outcome was health status, measured with the Kansas City cardiomyopathy questionnaire clinical summary score. Data were analyzed using descriptive statistics and multiple linear regression. RESULTS: The mean age of the sample ( n=168) was 58.7 (±12.5) years, 37% were women, 36% were Black, 36% identified as Hispanic/Latino, 48% were classified as New York Heart Association class III, and 44% reported not having enough income to make ends meet. Predictors of better health status in heart failure included higher physical function ( ß=0.89, p=0.001) and ability to participate in social roles and activities ( ß=0.58, p=0.002), and predictors of poorer health status were New York Heart Association class IV ( ß=-11.68, p=0.006) and dyspnea ( ß=-0.77, p<0.001). The predictors accounted for 73% of the variance in health status. CONCLUSION: Patient-centered interventions should focus on modifiable risk factors that reduce dyspnea, improve functional status, and enhance engagement in social roles to improve the health status of patients with heart failure.

A Systematic Review of Patient-Facing Visualizations of Personal Health Data.

OBJECTIVES: As personal health data are being returned to patients with increasing frequency and volume, visualizations are garnering excitement for their potential to facilitate patient interpretation. Evaluating these visualizations is important to ensure that patients are able to understand and, when appropriate, act upon health data in a safe and effective manner. The objective of this systematic review was to review and evaluate the state of the science of patient-facing visualizations of personal health data. METHODS: We searched five scholarly databases (PubMed, Embase, Scopus, ACM Digital Library [Association for Computing Machinery Digital Library], and IEEE Computational Index [Institute of Electrical and Electronics Engineers Computational Index]) through December 1, 2018 for relevant articles. We included English-language articles that developed or tested one or more patient-facing visualizations for personal health data. Three reviewers independently assessed quality of included articles using the Mixed methods Appraisal Tool. Characteristics of included articles and visualizations were extracted and synthesized. RESULTS: In 39 articles included in the review, there was heterogeneity in the sample sizes and methods for evaluation but not sample demographics. Few articles measured health literacy, numeracy, or graph literacy. Line graphs were the most common visualization, especially for longitudinal data, but number lines were used more frequently in included articles over past 5 years. Article findings suggested more patients understand the number lines and bar graphs compared with line graphs, and that color is effective at communicating risk, improving comprehension, and increasing confidence in interpretation. CONCLUSION: In this review, we summarize types and components of patient-facing visualizations and methodologies for development and evaluation in the reviewed articles. We also identify recommendations for future work relating to collecting and reporting data, examining clinically actionable boundaries for diverse data types, and leveraging data science. This work will be critically important as patient access of their personal health data through portals and mobile devices continues to rise.

Interventions to increase patient portal use in vulnerable populations: a systematic review.

BACKGROUND: More than 100 studies document disparities in patient portal use among vulnerable populations. Developing and testing strategies to reduce disparities in use is essential to ensure portals benefit all populations. OBJECTIVE: To systematically review the impact of interventions designed to: (1) increase portal use or predictors of use in vulnerable patient populations, or (2) reduce disparities in use. MATERIALS AND METHODS: A librarian searched Ovid MEDLINE, EMBASE, CINAHL, and Cochrane Reviews for studies published before September 1, 2018. Two reviewers independently selected English-language research articles that evaluated any interventions designed to impact an eligible outcome. One reviewer extracted data and categorized interventions, then another assessed accuracy. Two reviewers independently assessed risk of bias. RESULTS: Out of 18 included studies, 15 (83%) assessed an intervention's impact on portal use, 7 (39%) on predictors of use, and 1 (6%) on disparities in use. Most interventions studied focused on the individual (13 out of 26, 50%), as opposed to facilitating conditions, such as the tool, task, environment, or organization (SEIPS model). Twelve studies (67%) reported a statistically significant increase in portal use or predictors of use, or reduced disparities. Five studies (28%) had high or unclear risk of bias. CONCLUSION: Individually focused interventions have the most evidence for increasing portal use in vulnerable populations. Interventions affecting other system elements (tool, task, environment, organization) have not been sufficiently studied to draw conclusions. Given the well-established evidence for disparities in use and the limited research on effective interventions, research should move beyond identifying disparities to systematically addressing them at multiple levels.

Technology Access, Technical Assistance, and Disparities in Inpatient Portal Use.

BACKGROUND: Disadvantaged populations, including minorities and the elderly, use patient portals less often than relatively more advantaged populations. Limited access to and experience with technology contribute to these disparities. Free access to devices, the Internet, and technical assistance may eliminate disparities in portal use. OBJECTIVE: To examine predictors of frequent versus infrequent portal use among hospitalized patients who received free access to an iPad, the Internet, and technical assistance. MATERIALS AND METHODS: This subgroup analysis includes 146 intervention-arm participants from a pragmatic randomized controlled trial of an inpatient portal. The participants received free access to an iPad and inpatient portal while hospitalized on medical and surgical cardiac units, together with hands-on help using them. We used logistic regression to identify characteristics predictive of frequent use. RESULTS: More technology experience (adjusted odds ratio [OR] = 5.39, p = 0.049), less severe illness (adjusted OR = 2.07, p = 0.077), and private insurance (adjusted OR = 2.25, p = 0.043) predicted frequent use, with a predictive performance (area under the curve) of 65.6%. No significant differences in age, gender, race, ethnicity, level of education, employment status, or patient activation existed between the frequent and infrequent users in bivariate analyses. Significantly more frequent users noticed medical errors during their hospital stay. DISCUSSION AND CONCLUSION: Portal use was not associated with several sociodemographic characteristics previously found to limit use in the inpatient setting. However, limited technology experience and high illness severity were still barriers to frequent use. Future work should explore additional strategies, such as enrolling health care proxies and improving usability, to reduce potential disparities in portal use.

Engaging hospitalized patients with personalized health information: a randomized trial of an inpatient portal.

Objective: To determine the effects of an inpatient portal intervention on patient activation, patient satisfaction, patient engagement with health information, and 30-day hospital readmissions. Methods and Materials: From March 2014 to May 2017, we enrolled 426 English- or Spanish-speaking patients from 2 cardiac medical-surgical units at an urban academic medical center. Patients were randomized to 1 of 3 groups: 1) usual care, 2) tablet with general Internet access (tablet-only), and 3) tablet with an inpatient portal. The primary study outcome was patient activation (Patient Activation Measure-13). Secondary outcomes included all-cause readmission within 30 days, patient satisfaction, and patient engagement with health information. Results: There was no evidence of a difference in patient activation among patients assigned to the inpatient portal intervention compared to usual care or the tablet-only group. Patients in the inpatient portal group had lower 30-day hospital readmissions (5.5% vs. 12.9% tablet-only and 13.5% usual care; P = 0.044). There was evidence of a difference in patient engagement with health information between the inpatient portal and tablet-only group, including looking up health information online (89.6% vs. 51.8%; P < 0.001). Healthcare providers reported that patients found the portal useful and that the portal did not negatively impact healthcare delivery. Conclusions: Access to an inpatient portal did not significantly improve patient activation, but it was associated with looking up health information online and with a lower 30-day hospital readmission rate. These results illustrate benefit of providing hospitalized patients with real-time access to their electronic health record data while in the hospital. Trial Registration: ClinicalTrials.gov Identifier: NCT01970852.

Leveraging Patient-Reported Outcomes Using Data Visualization.

BACKGROUND: Health care organizations increasingly use patient-reported outcomes (PROs) to capture patients' health status. Although federal policy mandates PRO collection, the challenge remains to better engage patients in PRO surveys, and ensure patients comprehend the surveys and their results. OBJECTIVE: This article identifies the design requirements for an interface that assists patients with PRO survey completion and interpretation, and then builds and evaluates the interface. METHODS: We employed a user-centered design process that consisted of three stages. First, we conducted qualitative interviews and surveys with 13 patients and 11 health care providers to understand their perceptions of the value and challenges associated with the use of PRO measures. Second, we used the results to identify design requirements for an interface that collects PROs, and designed the interface. Third, we conducted usability testing with 12 additional patients in a hospital setting. RESULTS: In interviews, patients and providers reported that PRO surveys help patients to reflect on their symptoms, potentially identifying new opportunities for improved care. However, 6 out of 13 patients reported significant difficultly in understanding PRO survey questions, answer choices and results. Therefore, we identified aiding comprehension as a key design requirement, and incorporated visualizations into our interface design to aid comprehension. In usability testing, patients found the interface highly usable. CONCLUSION: Future interfaces designed to collect PROs may benefit from employing strategies such as visualization to aid comprehension and engage patients with surveys.

Engaging hospital patients in the medication reconciliation process using tablet computers.

Objective: Unintentional medication discrepancies contribute to preventable adverse drug events in patients. Patient engagement in medication safety beyond verbal participation in medication reconciliation is limited. We conducted a pilot study to determine whether patients' use of an electronic home medication review tool could improve medication safety during hospitalization. Materials and Methods: Patients were randomized to use a tool before or after hospital admission medication reconciliation to review and modify their home medication list. We assessed the quantity, potential severity, and potential harm of patients' and clinicians' medication changes. We also surveyed clinicians to assess the tool's usefulness. Results: Of 76 patients approached, 65 (86%) participated. Forty-eight (74%) made changes to their home medication list [before: 29 (81%), after: 19 (66%), p = .170]. Before group participants identified 57 changes that clinicians subsequently missed on admission medication reconciliation. Thirty-nine (74%) had a significant or greater potential severity, and 19 (36%) had a greater than 50-50 chance of harm. After group patients identified 68 additional changes to their reconciled medication lists. Fifty-one (75%) had a significant or greater potential severity, and 33 (49%) had a greater than 50-50 chance of harm. Clinicians reported believing that the tool would save time, and patients would supply useful information. Discussion: The results demonstrate a high willingness of patients to engage in medication reconciliation, and show that patients were able to identify important medication discrepancies and often changes that clinicians missed. Conclusion: Engaging patients in admission medication reconciliation using an electronic home medication review tool may improve medication safety during hospitalization.

Implementation of acute care patient portals: recommendations on utility and use from six early adopters.

Objective: To provide recommendations on how to most effectively implement advanced features of acute care patient portals, including: (1) patient-provider communication, (2) care plan information, (3) clinical data viewing, (4) patient education, (5) patient safety, (6) caregiver access, and (7) hospital amenities. Recommendations: We summarize the experiences of 6 organizations that have implemented acute care portals, representing a variety of settings and technologies. We discuss the considerations for and challenges of incorporating various features into an acute care patient portal, and extract the lessons learned from each institution's experience. We recommend that stakeholders in acute care patient portals should: (1) consider the benefits and challenges of generic and structured electronic care team messaging; (2) examine strategies to provide rich care plan information, such as daily schedule, problem list, care goals, discharge criteria, and post-hospitalization care plan; (3) offer increasingly comprehensive access to clinical data and medical record information; (4) develop alternative strategies for patient education that go beyond infobuttons; (5) focus on improving patient safety through explicit safety-oriented features; (6) consider strategies to engage patient caregivers through portals while remaining cognizant of potential Health Insurance Portability and Accountability Act (HIPAA) violations; (7) consider offering amenities to patients through acute care portals, such as information about navigating the hospital or electronic food ordering.

Providers' Perspectives on Sharing Health Information through Acute Care Patient Portals.

Engaging healthcare providers in acute care patient portal implementation is critical to ensure productive use. However, few studies have assessed provider's perceptions of an acute care portal after implementation. In this study, we surveyed 63 nurses, physicians, and physician assistants following a 3-year randomized trial of an acute care portal. The survey assessed providers' perceptions of the portal and its impact on care delivery. Respondents reported that the portal positively impacted care, and they perceived that their patients found it usable and trustworthy. Respondents reported that all the portal's features were useful, especially the display of laboratory test results. Compared with the results of a patient survey, providers underestimated the portal's usefulness to patients, and ranked features as very useful significantly less often than patients (57% vs. 74%; p<0.001). Our study found that providers supported their patients' use of the portal, but may have underappreciated the portal's value to patients.

Visualizing the Patient-Reported Outcomes Measurement Information System (PROMIS) Measures for Clinicians and Patients.

Congruent with the nationwide movement toward patient-centered healthcare, an increasing number of organizations collect and assess patient-reported outcomes (PROs). The standardized NIH PROMIS measures represent one of the most widely used PRO questionnaires, but organizations still face challenges with conveying PROMIS outcomes to clinicians in clinically relevant ways. Our proposed solution, the ProVis application, uses visualizations to engage heart failure patients with PROMIS questionnaires in the waiting room, and conveys PROMIS data to clinicians through longitudinal visualizations in iNYP, our institution's electronic health record (EHR) interface. Here, we discuss the design and development of ProVis, the alternative strategies we considered, the strengths and weaknesses of ProVis, and our future dissemination and evaluation plans.

Sharing Clinical Notes with Hospitalized Patients via an Acute Care Portal.

Though several institutions offer hospitalized patients access to their medical records through acute care patient portals, no studies have assessed the potential impact of patients' access to physicians' notes through these systems. We employed a mixed-methods approach, including patient surveys, system usage log analysis, and qualitative interviews, to describe patients' perspectives on receiving their clinical notes and usage of the clinical notes feature in an acute care patient portal. Patients visited the clinical notes feature more frequently and for longer durations than any other feature. In qualitative interviews, patients reported improved access to information, better insight into their conditions, decreased anxiety, increased appreciation for clinicians, improvements in health behaviors, and more engagement in care. Our results suggest that sharing notes with hospitalized patients is feasible and beneficial, although further studies should investigate the magnitude of benefit and explore the unintended negative consequences associated with increased transparency of clinical information.

Clotting factor changes during the first cycle of oral contraceptive use.

OBJECTIVES: The risk of venous thromboembolism (VTE) is highest during the initial months of oral contraceptive (OC) use. We sought to evaluate the extent of hemostatic variable changes during the initial OC cycle and if such changes are related to systemic ethinyl estradiol (EE2) exposure. STUDY DESIGN: Participants provided multiple blood samples during a 21-day OC cycle (30mcg EE2; 150mcg levonorgestrel) and after a single dose following a washout period. Analytes included D-dimer, factor VIII activity, protein C total antigen and the hepatic proteins corticosteroid-binding globulin (CBG) and sex-hormone-binding globulin (SHBG). EE2 pharmacokinetic analyses related to the 24h after the first OC tablet (OC1) and at steady state (OC21). RESULTS: Seventeen women completed the study. D-dimer more than doubled by OC6 (p=.013) and remained elevated at OC21 (p=.012). D-dimer levels within women varied widely from day to day. Factor VIII increased 27% by OC2 (p<.001) but declined to a 9% increase by OC21. Protein C increased only 6%. EE2 steady-state area-under-the-curve ranged from 488 to 1103pg∙h/mL; higher levels were not correlated with greater increases in clotting variables. CBG and SHBG increased significantly but were not significantly correlated with levels of EE2 or with the hemostatic variables. CONCLUSIONS: D-dimer increases during the first OC cycle were at least as great as increases seen with longer OC use. These results provide support for the increased VTE risk during initial OC use. The extreme variability in D-dimer levels may be an important component of this risk. IMPLICATIONS: This study showed that increases in D-dimer are clearly evident in the first cycle of OC use and may be larger than are seen after a longer duration of use and thus provide biological support for the increased VTE risk during initial OC use found in epidemiological studies.