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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 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.

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.

BACKGROUND The rapidly evolving digital environment of the social media era has increased the reach of both quality health information and misinformation. Platforms such as YouTube enable easy sharing of attractive, if not always evidence-based, videos with large personal networks and the public. Although much research has focused on characterizing health misinformation on the internet, it has not sufficiently focused on describing and measuring individuals’ information competencies that build resilience. OBJECTIVE This study aims to assess individuals’ willingness to share a non–evidence-based YouTube video about strengthening the immune system; to describe types of evidence that individuals view as supportive of the claim by the video; and to relate information-sharing behavior to several information competencies, namely, information literacy, science literacy, knowledge of the immune system, interpersonal trust, and trust in health authority. METHODS A web-based survey methodology with 150 individuals across the United States was used. Participants were asked to watch a YouTube excerpt from a morning TV show featuring a wellness pharmacy representative promoting an immunity-boosting dietary supplement produced by his company; answer questions about the video and report whether they would share it with a cousin who was frequently sick; and complete instruments pertaining to the information competencies outlined in the objectives. RESULTS Most participants (105/150, 70%) said that they would share the video with their cousins. Their confidence in the supplement would be further boosted by a friend’s recommendations, positive reviews on a crowdsourcing website, and statements of uncited effectiveness studies on the producer’s website. Although all information literacy competencies analyzed in this study had a statistically significant relationship with the outcome, each competency was also highly correlated with the others. Information literacy and interpersonal trust independently predicted the largest amount of variance in the intention to share the video (17% and 16%, respectively). Interpersonal trust was negatively related to the willingness to share the video. Science literacy explained 7% of the variance. CONCLUSIONS People are vulnerable to web-based misinformation and are likely to propagate it on the internet. Information literacy and science literacy are associated with less vulnerability to misinformation and a lower propensity to spread it. Of the two, information literacy holds a greater promise as an intervention target. Understanding the role of different kinds of trust in information sharing merits further research. CLINICALTRIAL

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 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.

Patients can designate other people to have proxy access to their portals friends, family, children, parents, and caregivers who are necessarily patients themselves. The chapter provides an overview of caregiver-used health information technology that aims to support caregiving experience: personal health record portals that enables caregiver access, a care-coordination apps, and technology-enabled psychosocial support tools for caregivers. A review of medical literature in PubMed published between 1991 and March 2019 done by the first author of this book yielded 26 studies of personal health records or patient portals in which children and young adults were involved. In the twenty-first century, many different civic, political, commercial, and nonprofit agents compete for the attention of consumers in different spheres: in digital and social media markets, and nonprofits like public libraries. Demographically, caregivers are a diverse group spanning age, gender, cultural background, and income categories.

This chapter introduces the reader to consumer health informatics as an interdisciplinary field in which academia, healthcare practice, the health IT industry, and the federal government are principal players and stakeholders. Medical informatics has been defined as “the field that is concerned with the optimal use of information, often aided by the use of technology, to improve individual health, health care, public health, and biomedical research.” It was identified as a core competency for all healthcare professionals by the Institute of Medicine in 2003. The principal professional organization for biomedical informatics, including the subspecialty of consumer health informatics. The Institute defined it as: the ability to “communicate, manage knowledge, mitigate error, and support decisionmaking using information technology. “Consumer health informatics”, or CHI, is a term for the subfield of informatics that focuses on consumer and patient perspectives, simultaneously as users and beneficiaries of information systems that empower them to manage the own health.

Consumer health literacy is a necessary skill in all facets of library work, from reference desk to programming to website development. In this chapter, the authors present key terms in the domain of health literacy; challenges and controversies in research and public library practice; and findings from a recent study of public library workers meeting consumer health information needs. Finally, the authors present examples of National Library of Medicine (NLM) initiatives for public libraries and public librarians focusing on bridging health literacy gaps. Socially disadvantaged groups who are the most affected by health disparities tend to be those who are lower-income, have less education, and are not White. The combined effects of environment and socioeconomic status mean that these communities have particular, highly local challenges in addressing their health issues, as individuals and as a population. Health literacy can serve as the enabling factor in obtaining quality health information, navigating healthcare, and seeking better health. To support the public, NLM and its National Network of Libraries of Medicine have placed a strategic emphasis on public libraries in order to develop long-term partnerships. The goals of these partnerships are to support staff development and programming, and to promote resource-sharing about programs and activities focusing on health information. Public libraries are everywhere and open to all. This makes them the ideal community agency to reach out to the public and implement national information initiatives.

BACKGROUND Informatics tools for consumers and patients are important vehicles for facilitating engagement, and the field of consumer health informatics is an key space for exploring the potential of these tools. To understand research findings in this complex and heterogeneous field, a scoping review can help not only to identify, but to bridge, the array of diverse disciplines and publication venues involved. OBJECTIVE The goal of this systematic scoping review was to characterize the extent; range; and nature of research activity in consumer health informatics, focusing on the contributing disciplines of informatics; information science; and engineering. METHODS Four electronic databases (Compendex, LISTA, Library Literature, and INSPEC) were searched for published studies dating from January 1, 2008, to June 1, 2015. Our inclusion criteria specified that they be English-language articles describing empirical studies focusing on consumers; relate to human health; and feature technologies designed to interact directly with consumers. Clinical applications and technologies regulated by the FDA, as well as digital tools that do not provide individualized information, were excluded. RESULTS We identified 271 studies in 63 unique journals and 22 unique conference proceedings. Sixty-five percent of these studies were found in health informatics journals; 23% in information science and library science; 15% in computer science; 4% in medicine; and 5% in other fields, ranging from engineering to education. A single journal, the Journal of Medical Internet Research, was home to 36% of the studies. Sixty-two percent of these studies relied on quantitative methods, 55% on qualitative methods, and 17% were mixed-method studies. Seventy percent of studies used no specific theoretical framework; of those that did, Social Cognitive Theory appeared the most frequently, in 16 studies. Fifty-two studies identified problems with technology adoption, acceptance, or use, 38% of these barriers being machine-centered (for example, content or computer-based), and 62% user-centered, the most frequently mentioned being attitude and motivation toward technology. One hundred and twenty-six interventional studies investigated disparities or heterogeneity in treatment effects in specific populations. The most frequent disparity investigated was gender (13 studies), followed closely by race/ethnicity (11). Half the studies focused on a specific diagnosis, most commonly diabetes and cancer; 30% focused on a health behavior, usually information-seeking. Gaps were found in reporting of study design, with only 46% of studies reporting on specific methodological details. Missing details were response rates, since 59% of survey studies did not provide them; and participant retention rates, since 53% of interventional studies did not provide this information. Participant demographics were usually not reported beyond gender and age. Only 17% studies informed the reader of their theoretical basis, and only 4 studies focused on theory at the group, network, organizational or ecological levels—the majority being either health behavior or interpersonal theories. Finally, of the 131 studies describing the design of a new technology, 81% did not involve either patients or consumers in their design. In fact, while consumer and patient were necessarily core concepts in this literature, these terms were often used interchangeably. The research literature of consumer health informatics at present is scattered across research fields; only 49% of studies from these disciplines is indexed by MEDLINE and studies in computer science are siloed in a user interface that makes exploration of that literature difficult. CONCLUSIONS Few studies analyzed in this scoping review were based in theory, and very little was presented in this literature about the life context, motives for technology use, and personal characteristics of study participants.

This study employs qualitative analysis of interviews with 17 disability counselors to examine their health information behavior by identifying which health information sources they use, what their criteria are, and whether they consulted librarians for assistance. The results indicate that disability counselors rely on the Internet, colleagues, and print materials to facilitate disability services for students. The author, recommendations from colleagues, and comparison of content were identified as the primary methods for determining the credibility of health information sources. The findings provide insight into how disability counselors use health information sources and determine their credibility when assisting students with their accommodations needs.