Perception of Physicians' Notes Among Parents of Different Health Literacy Levels.

OBJECTIVES: To explore the benefits and challenges of accessing physicians' notes during pediatric hospitalization across parents of different health literacy levels. METHODS: For this secondary analysis, we used semi-structured interviews conducted with 28 parents on their impressions of having access to their child's care team notes on a bedside table. Three researchers used thematic analysis to develop a codebook, coded interview data, and identified themes. Parent interviews and respective themes were then dichotomized into proficient or limited health literacy groups and compared. RESULTS: Nine themes were identified in this secondary analysis: 6 benefits and 3 challenges. All parents identified more benefits than challenges, including that the notes served as a recap of information and memory aid and increased autonomy, empowerment, and advocacy for their child. Both groups disliked receiving bad news in notes before face-to-face communication. Parents with proficient literacy reported that notes allowed them to check information accuracy, but that notes may not be as beneficial for parents with lower health literacy. Parents with limited literacy uniquely identified limited comprehension of medical terms but indicated that notes facilitated their understanding of their child's condition, increased their appreciation for their health care team, and decreased their anxiety, stress, and worry. CONCLUSIONS: Parents with limited health literacy uniquely reported that notes improved their understanding of their child's care and decreased (rather than increased) worry. Reducing medical terminology may be one equitable way to increase note accessibility for parents across the health literacy spectrum.

Characterizing terminology applied by authors and database producers to informatics literature on consumer engagement with wearable devices.

OBJECTIVE: Identifying consumer health informatics (CHI) literature is challenging. To recommend strategies to improve discoverability, we aimed to characterize controlled vocabulary and author terminology applied to a subset of CHI literature on wearable technologies. MATERIALS AND METHODS: To retrieve articles from PubMed that addressed patient/consumer engagement with wearables, we developed a search strategy of textwords and Medical Subject Headings (MeSH). To refine our methodology, we used a random sample of 200 articles from 2016 to 2018. A descriptive analysis of articles (N = 2522) from 2019 identified 308 (12.2%) CHI-related articles, for which we characterized their assigned terminology. We visualized the 100 most frequent terms assigned to the articles from MeSH, author keywords, CINAHL, and Engineering Databases (Compendex and Inspec together). We assessed the overlap of CHI terms among sources and evaluated terms related to consumer engagement. RESULTS: The 308 articles were published in 181 journals, more in health journals (82%) than informatics (11%). Only 44% were indexed with the MeSH term "wearable electronic devices." Author keywords were common (91%) but rarely represented consumer engagement with device data, eg, self-monitoring (n = 12, 0.7%) or self-management (n = 9, 0.5%). Only 10 articles (3%) had terminology from all sources (authors, PubMed, CINAHL, Compendex, and Inspec). DISCUSSION: Our main finding was that consumer engagement was not well represented in health and engineering database thesauri. CONCLUSIONS: Authors of CHI studies should indicate consumer/patient engagement and the specific technology investigated in titles, abstracts, and author keywords to facilitate discovery by readers and expand vocabularies and indexing.

Parent Perspectives on Sharing Pediatric Hospitalization Clinical Notes.

BACKGROUND AND OBJECTIVES: Federal guidelines mandate that hospitals provide patients and caregivers with free, online access to their physician's clinical notes. This study sought to identify parent perceptions of the benefits and challenges of real-time note access during their child's hospitalization and strategies to optimize note-sharing at the bedside. METHODS: This qualitative study was conducted with parents of children aged <12 years admitted to a pediatric hospitalist service in April 2019. Parents were given access to their child's admission and daily progress notes on a bedside tablet (iPad), and interviewed upon discharge. In-depth, 60-minute interviews were audio-recorded and transcribed. Two researchers developed and refined a codebook and coded data inductively and deductively with validation by a third researcher. Thematic analysis was used to identify emergent themes. RESULTS: The 28 interviewed parents described 6 benefits of having note access, which: provided a recap and improved their knowledge about their child's care plan, enhanced communication, facilitated empowerment, increased autonomy, and incited positive emotions. Potential challenges included that notes: caused confusion, hindered communication with the health care team, highlighted problems with note content, and could incite negative emotions. Parents recommended 4 strategies to support sharing: provide preemptive communication about expectations, optimize the note release process, consider parent-friendly note template modifications, and offer informational resources for parents. CONCLUSIONS: Findings provide a framework for operationalizing note-sharing with parents during hospitalization. These results have important implications for hospitals working to comply with federal regulations and researchers assessing the effects of increased information transparency in the inpatient setting.

In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders.

BACKGROUND: Patient portals are a health information technology that allows patients and their proxies, such as caregivers and family members, to access designated portions of their electronic health record using mobile devices and web browsers. The Open Notes initiative in the United States, which became federal law in April 2021, has redrawn and expanded the boundaries of medical records. Only a few studies have focused on sharing notes with parents or caregivers of pediatric patients. OBJECTIVE: This study aimed to investigate the anticipated impact of increasing the flow of electronic health record information, specifically physicians' daily inpatient progress notes, via a patient portal to parents during their child's acute hospital stay-an understudied population and an understudied setting. METHODS: A total of 5 in-person focus groups were conducted with 34 stakeholders most likely impacted by sharing of physicians' inpatient notes with parents of hospitalized children: hospital administrators, hospitalist physicians, interns and resident physicians, nurses, and the parents themselves. RESULTS: Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and reinforcement, education, stress reduction, quality control, and improving family-provider relationships. Challenges identified included burden on provider, medical jargon, communication, sensitive content, and decreasing trust. CONCLUSIONS: Providing patients and, in the case of pediatrics, caregivers with access to medical records via patient portals increases the flow of information and, in turn, their ability to participate in the discourse of their care. Parents in this study demonstrated not only that they act as monitors and guardians of their children's health but also that they are observers of the clinical processes taking place in the hospital and at their child's bedside. This includes the clinical documentation process, from the creation of notes to the reading and sharing of the notes. Parents acknowledge not only the importance of notes in the clinicians' workflow but also their collaboration with providers as part of the health care team.

BedsideNotes: Sharing Physicians' Notes With Parents During Hospitalization.

OBJECTIVES: Physicians increasingly share ambulatory visit notes with patients to meet new federal requirements, and evidence suggests patient experiences improve without overburdening physicians. Whether sharing inpatient notes with parents of hospitalized children yields similar outcomes is unknown. In this pilot study, we evaluated parent and physician perceptions of sharing notes with parents during hospitalization. METHODS: Parents of children aged <12 years admitted to a hospitalist service at a tertiary children's hospital in April 2019 were offered real-time access to their child's admission and daily progress notes on a bedside inpatient portal (MyChart Bedside). Upon discharge, ambulatory OpenNotes survey items assessed parent and physician (attendings and interns) perceptions of note sharing. RESULTS: In all, 25 parents and their children's discharging attending and intern physicians participated. Parents agreed that the information in notes was useful and helped them remember their child's care plan (100%), prepare for rounds (96%), and feel in control (91%). Although many physicians (34%) expressed concern that notes would confuse parents, no parent reported that notes were confusing. Some physicians perceived that they spent more time writing and/or editing notes (28%) or that their job was more difficult (15%). Satisfaction with sharing was highest among parents (100%), followed by attendings (81%) and interns (35%). CONCLUSIONS: Parents all valued having access to physicians' notes during their child's hospital stay; however, some physicians remained concerned about the potential negative consequences of sharing. Comparative effectiveness studies are needed to evaluate the effect of note sharing on outcomes for hospitalized children, families, and staff.

Stakeholder Perspectives in Anticipation of Sharing Physicians' Notes With Parents of Hospitalized Children.

OBJECTIVE: Elicit stakeholder perspectives on the anticipated benefits and challenges of sharing hospital physicians' admission and daily progress notes with parents at the bedside during their child's hospitalization and identify strategies to aid implementation of inpatient note sharing. METHODS: Five semistructured focus groups were conducted with 34 stakeholders (8 parents, 8 nurses, 5 residents, 7 hospitalists, 6 administrators) at a tertiary children's hospital from October to November 2018 to identify anticipated benefits, challenges, and implementation strategies prior to sharing inpatient physicians' notes. A facilitator guide elicited participants' perspectives about the idea of sharing notes with parents during their child's hospitalization. Three researchers used content analysis to analyze qualitative data inductively. RESULTS: Anticipated benefits of sharing inpatient notes included: Reinforcement of information, improved parental knowledge and empowerment, enhanced parent communication and partnership with providers, and increased provider accountability and documentation quality. Expected challenges included: Increased provider workload, heightened parental confusion, distress or anxiety, impaired parent relationship with providers, and compromised note quality and purpose. Suggested implementation strategies included: Setting staff and parent expectations upfront, providing tools to support parent education, and limiting shared note content and family eligibility. CONCLUSIONS: Stakeholders anticipated multiple benefits and drawbacks of sharing notes with parents during their child's hospital stay and made practical suggestions for ways to implement inpatient note sharing to promote these benefits and mitigate challenges. Findings will inform the design and implementation of an intervention to share notes using an inpatient portal and evaluation of its effect on child, parent, and healthcare team outcomes.

Parent Perspectives on Pediatric Inpatient OpenNotes.

INTRODUCTION: 169 U.S. health systems now engage in OpenNotes: a movement to share clinical notes with patients. Few studies have focused on releasing notes during hospitalization, pediatrics, or parents/caregiver perspectives. METHODS: A focus group was conducted with eight parents with experience caring for a hospitalized child at a Midwest children's hospital. In the 2-hour session, parents were asked about their perspectives of the idea of sharing inpatient doctors' daily notes with parents during their child's hospitalization. Qualitative analysis was conducted to elicit themes related to the potential benefits and challenges of sharing inpatient notes. RESULTS: The most mentioned benefits included notes providing information as a reference for improved family education/understanding, communication/continuity, and advocacy/empowerment. Challenges were primarily related to note content, impaired communication and negative impact on families. CONCLUSION: Participants identified multiple potential benefits of and challenges to sharing notes with parents during their child's hospitalization but also acknowledged the impact on healthcare professionals who work alongside them.

MD-CTS: An integrated terminology reference of clinical and translational medicine.

New vocabularies are rapidly evolving in the literature relative to the practice of clinical medicine and translational research. To provide integrated access to new terms, we developed a mobile and desktop online reference-Marshfield Dictionary of Clinical and Translational Science (MD-CTS). It is the first public resource that comprehensively integrates Wiktionary (word definition), BioPortal (ontology), Wiki (image reference), and Medline abstract (word usage) information. MD-CTS is accessible at http://spellchecker.mfldclin.edu/. The website provides a broadened capacity for the wider clinical and translational science community to keep pace with newly emerging scientific vocabulary. An initial evaluation using 63 randomly selected biomedical words suggests that online references generally provided better coverage (73%-95%) than paper-based dictionaries (57-71%).

Library workers' personal beliefs about childhood vaccination and vaccination information provision.

This is a report on the impact of library workers' personal beliefs on provision of vaccination information. Nine public librarians were interviewed about a hypothetical scenario involving a patron who is concerned about possible vaccination-autism connections. The analysis employed thematic coding. Results suggested that while most participants supported childhood vaccination, tension between their personal views and neutrality impacted their ability to conduct the interaction. The neutrality stance, though consonant with professional guidelines, curtails librarians' ability to provide accurate health information. Outreach and communication between public and health sciences libraries can help librarians provide resources to address health controversies.

Knowledge gaps among public librarians seeking vaccination information: A qualitative study.

Public libraries have been called the "first responders" to the specialized health information needs of the general public. The challenges inherent in consumer health information (CHI) service are centered around the Patron, the Librarian, the Information Resources, and the Library itself. The pilot study involved interviews with nine individual library workers in eight public libraries in four library systems: the District of Columbia, Montgomery and Prince George's Counties in Maryland, and Fairfax County in Virginia. Library workers were asked about common consumer health information requests, the nature of their collections, and the role of public libraries in meeting these information needs. The subjects were also presented with a hypothetical scenario, and their responses suggest knowledge gaps. The findings point to the increasing necessity and importance of training and support for public librarians, as well as the importance of understanding where the medical knowledge gaps exist. Public librarians need to commit to formal evaluation of their skill sets and knowledge gaps, in order to identify areas to which libraries can devote limited resources.

A classification of errors in lay comprehension of medical documents.

Emphasis on participatory medicine requires that patients and consumers participate in tasks traditionally reserved for healthcare providers. This includes reading and comprehending medical documents, often but not necessarily in the context of interacting with Personal Health Records (PHRs). Research suggests that while giving patients access to medical documents has many benefits (e.g., improved patient-provider communication), lay people often have difficulty understanding medical information. Informatics can address the problem by developing tools that support comprehension; this requires in-depth understanding of the nature and causes of errors that lay people make when comprehending clinical documents. The objective of this study was to develop a classification scheme of comprehension errors, based on lay individuals' retellings of two documents containing clinical text: a description of a clinical trial and a typical office visit note. While not comprehensive, the scheme can serve as a foundation of further development of a taxonomy of patients' comprehension errors. Eighty participants, all healthy volunteers, read and retold two medical documents. A data-driven content analysis procedure was used to extract and classify retelling errors. The resulting hierarchical classification scheme contains nine categories and 23 subcategories. The most common error made by the participants involved incorrectly recalling brand names of medications. Other common errors included misunderstanding clinical concepts, misreporting the objective of a clinical research study and physician's findings during a patient's visit, and confusing and misspelling clinical terms. A combination of informatics support and health education is likely to improve the accuracy of lay comprehension of medical documents.

Beyond readability: investigating coherence of clinical text for consumers.

BACKGROUND: A basic tenet of consumer health informatics is that understandable health resources empower the public. Text comprehension holds great promise for helping to characterize consumer problems in understanding health texts. The need for efficient ways to assess consumer-oriented health texts and the availability of computationally supported tools led us to explore the effect of various text characteristics on readers' understanding of health texts, as well as to develop novel approaches to assessing these characteristics. OBJECTIVE: The goal of this study was to compare the impact of two different approaches to enhancing readability, and three interventions, on individuals' comprehension of short, complex passages of health text. METHODS: Participants were 80 university staff, faculty, or students. Each participant was asked to "retell" the content of two health texts: one a clinical trial in the domain of diabetes mellitus, and the other typical Visit Notes. These texts were transformed for the intervention arms of the study. Two interventions provided terminology support via (1) standard dictionary or (2) contextualized vocabulary definitions. The third intervention provided coherence improvement. We assessed participants' comprehension of the clinical texts through propositional analysis, an open-ended questionnaire, and analysis of the number of errors made. RESULTS: For the clinical trial text, the effect of text condition was not significant in any of the comparisons, suggesting no differences in recall, despite the varying levels of support (P=.84). For the Visit Note, however, the difference in the median total propositions recalled between the Coherent and the (Original+Dictionary) conditions was significant (P=.04). This suggests that participants in the Coherent condition recalled more of the original Visit Notes content than did participants in the Original and the Dictionary conditions combined. However, no difference was seen between (Original+Dictionary) and Vocabulary (P=.36) nor Coherent and Vocabulary (P=.62). No statistically significant effect of any document transformation was found either in the open-ended questionnaire (clinical trial: P=.86, Visit Note: P=.20) or in the error rate (clinical trial: P=.47, Visit Note: P=.25). However, post hoc power analysis suggested that increasing the sample size by approximately 6 participants per condition would result in a significant difference for the Visit Note, but not for the clinical trial text. CONCLUSIONS: Statistically, the results of this study attest that improving coherence has a small effect on consumer comprehension of clinical text, but the task is extremely labor intensive and not scalable. Further research is needed using texts from more diverse clinical domains and more heterogeneous participants, including actual patients. Since comprehensibility of clinical text appears difficult to automate, informatics support tools may most productively support the health care professionals tasked with making clinical information understandable to patients.

PatientsLikeMe: Consumer health vocabulary as a folksonomy.

PatientsLikeMe is an online social networking community. Subcommunities center on three diagnoses: Amyotrophic Lateral Sclerosis, Multiple Sclerosis and Parkinsons Disease. Community members can describe their symptoms online in natural language, resulting in folksonomic tags available for clinical analysis and for browsing by other users to find patients like me. Forty-three percent of PatientsLikeMe symptom terms are present as exact (24%) or synonymous (19%) terms in the Unified Medical Language System Metathesaurus (National Library of Medicine; 2007AC). Slightly more than half of the symptom terms either do not match the UMLS, or are unclassifiable. A clinical vocabulary, SNOMED CT, accounts for 93% of the matching terms. Analysis of the failed matches reveals challenges for online patient communication, not only with healthcare professionals, but with other patients. In a Web 2.0 environment with lowered barriers between consumers and professionals, a deficiency in knowledge representation affects not only professionals, but consumers as well.

Making primarily professional terms more comprehensible to the lay audience.

Certain texts, such as clinical reports and clinical trial records, are written by professionals for professionals while being increasingly accessed by lay people. To improve the comprehensibility of such documents to the lay audience, we conducted a pilot study to analyze terms used primarily by health professionals, and explore ways to make them more comprehensible to lay people.

Developing informatics tools and strategies for consumer-centered health communication.

As the emphasis on individuals' active partnership in health care grows, so does the public's need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions. This article presents an overview of the consumer health informatics field, discusses promising approaches to supporting health communication, and identifies challenges plus direction for future research and development. The authors' recommendations emphasize the need for drawing upon communication and social science theories of information behavior, reaching out to consumers via a range of traditional and novel formats, gaining better understanding of the public's health information needs, and developing informatics solutions for tailoring resources to users' needs and competencies. This article was written as a scholarly outreach and leadership project by members of the American Medical Informatics Association's Consumer Health Informatics Working Group.

Consumer health concepts that do not map to the UMLS: where do they fit?

OBJECTIVE: This study has two objectives: first, to identify and characterize consumer health terms not found in the Unified Medical Language System (UMLS) Metathesaurus (2007 AB); second, to describe the procedure for creating new concepts in the process of building a consumer health vocabulary. How do the unmapped consumer health concepts relate to the existing UMLS concepts? What is the place of these new concepts in professional medical discourse? DESIGN: The consumer health terms were extracted from two large corpora derived in the process of Open Access Collaboratory Consumer Health Vocabulary (OAC CHV) building. Terms that could not be mapped to existing UMLS concepts via machine and manual methods prompted creation of new concepts, which were then ascribed semantic types, related to existing UMLS concepts, and coded according to specified criteria. RESULTS: This approach identified 64 unmapped concepts, 17 of which were labeled as uniquely "lay" and not feasible for inclusion in professional health terminologies. The remaining terms constituted potential candidates for inclusion in professional vocabularies, or could be constructed by post-coordinating existing UMLS terms. The relationship between new and existing concepts differed depending on the corpora from which they were extracted. CONCLUSION: Non-mapping concepts constitute a small proportion of consumer health terms, but a proportion that is likely to affect the process of consumer health vocabulary building. We have identified a novel approach for identifying such concepts.

Text characteristics of clinical reports and their implications for the readability of personal health records.

Through personal health record applications (PHR), consumers are gaining access to their electronic health records (EHR). A new challenge is to make the content of these records comprehensible to consumers. To address this challenge, we analyzed the text unit length, syntactic and semantic characteristics of three sets of health texts: clinical reports from EHR, known difficult materials and easy-to-read materials. Our findings suggest that EHR texts are more different from easy texts and more similar to difficult texts in terms of syntactic and semantic characteristics, and EHR texts are more similar to easy texts and different from difficult texts in regard to text unit length features. Since commonly used readability formulas focus more on text unit length characteristics, this study points to the need to tackle syntactic and semantic issues in the effort to measure and improve PHR readability.

Nursery, gutter, or anatomy class? Obscene expression in consumer health.

This paper presents results of a consumer health vocabulary study of text appearing on Web-based bulletin boards. Consumers used obscenities and euphemisms to refer to certain body parts, functions, and behaviors. The female genitalia are the body region most often described with an obscenity (29% of all instances); male genitalia, in contrast, were rendered as obscene only 3% of the time. Consumers responding on the bulletin boards appear genuinely to prefer euphemistic slang and baby talk (62%) over obscenities (24%) when referring to the buttocks. From an anatomical perspective, this large dataset reveals a consumer health vocabulary of euphemisms and outright obscenities coexisting with professional medical terminology. The evident preference for euphemisms and slang for some anatomical parts has important implications for the design of health information controlled vocabularies and translation systems, faced with a lay language more informal than expected.

Towards consumer-friendly PHRs: patients' experience with reviewing their health records.

Consumer-friendly Personal Health Records (PHRs) have the potential of providing patients with the basis for taking an active role in their healthcare. However, few studies focused on the features that make health records comprehensible for lay audiences. This paper presents a survey of patients' experience with reviewing their health records, in order to identify barriers to optimal record use. The data are analyzed via descriptive statistical and thematic analysis. The results point to providers' notes, laboratory test results and radiology reports as the most difficult records sections for lay reviewers. Professional medical terminology, lack of explanations of complex concepts (e.g., lab test ranges) and suboptimal data ordering emerge as the most common comprehension barriers. While most patients today access their records in paper format, electronic PHRs present much more opportunities for providing comprehension support.