Social Media is Addictive and Influences Behavior: Should it Be Regulated as a Digital Therapeutic?

Recently, we were deeply saddened by the findings of the coroner investigating the death of 14-year-old Molly Russell. Deeply saddened and angry but not surprised. This case should be seen as a sentinel event, given that this is the first time social media was directly implicated as a cause of death. We should use this opportunity to advance proposals for the regulations of the health effects of social media.

Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.

BACKGROUND: Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting. METHODS: This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data. DISCUSSION: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

St. Jude Cancer Education for Children Program: The Impact of a Teacher-Led Intervention on Student Knowledge Gains.

In 2006, St. Jude Children's Research Hospital (Memphis, Tennessee) began developing a school-based outreach program known as the St. Jude Cancer Education for Children Program (SJCECP). The aim of this program is to teach Memphis-area children about cells, cancer, and healthy habits that can prevent the development of cancer in adulthood. Initial plans for delivery of the program was for St. Jude staff to present the program at local schools. This plan for disseminating instruction was not feasible due to the limited availability of St. Jude staff. As a next step, during the 2012-2014 academic years, we conducted a study entitled SJCECP2, utilizing the SJCECP curriculum, with the objective of evaluating the impact of the educational intervention on knowledge acquisition and retention among fourth-grade students participating in a modified, teacher-led version of the program. Eighteen teachers and 426 students from 10 local schools in the greater Memphis area participated in the program evaluation. This study used a single-group, pre-test/post-test design to determine the impact of the SJCECP intervention on changes in knowledge scores among fourth-grade students. Testing was on cells, cancer, and healthy living. The mean scores increased from 6.45 to 8.12, 5.99 to 7.65, and 5.92 to 7.96 on cell, cancer, and health behaviors units, respectively (all p values <.001). Preliminary evidence suggests that the SJCECP2 intervention is a useful tool for teachers to improve student knowledge of knowledge of cells, cancer, and healthy living concepts at the fourth-grade level.

Ethical decision making about end-of-life care issues by pediatric oncologists in economically diverse settings.

PURPOSE: Pediatric cancer represents 1% to 4% of all cancers worldwide, with the majority of diagnoses in developing countries where mortality remains much higher than that in high-income countries. We sought to describe differences in ethical decision-making at the end of life among an international sample of pediatric oncologists practicing in countries with a variety of income levels and resource settings. METHODS: Pediatric oncologists subscribing to an educational international oncology Web site were invited to complete a 38-item web-based survey investigating ethical domains related to end-of-life care: level of care, fiduciary responsibility, decision making, and justice. RESULTS: Responses were received from 401 physicians in 83 countries, with most respondents practicing in middle-income or high-income countries. Significant differences in attitudes toward ethical issues existed across the national developmental indices. CONCLUSIONS: Further education on ethical principles is warranted in pediatric oncology, particularly among oncologists practicing in low-income or middle-income countries.

Identifying the capabilities for creating next-generation registries: a guide for data leaders and a case for "registry science".

OBJECTIVE: The increasing demands for curated, high-quality research data are driving the emergence of a novel registry type. The need to assemble, curate, and export this data grows, and the conventional simplicity of registry models is driving the need for advanced, multimodal data registries-the dawn of the next-generation registry. MATERIALS AND METHODS: The article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries. RESULTS: We propose a framework for the planning, construction, maintenance, and sustainability of this new registry type. DISCUSSION: A rubric of organizational, computational, and human resource needs is discussed in detail, backed by over 40 years of combined in-the-field experiences by the authors. CONCLUSIONS: A novel field, registry science, within the clinical research informatics domain, has arisen to offer its insights into conceiving, structuring, and sustaining this new breed of tools.

Evaluation of the design and structure of electronic medication labels to improve patient health knowledge and safety: a systematic review.

INTRODUCTION: Patient misunderstanding of instructions on medication labels is a common cause of medication errors and can result in ineffective treatment. One way to better improve patient comprehension of medication labels is by optimizing the content and display of the information. OBJECTIVES: To review comparative studies that have evaluated the design of a medication label to improve patient knowledge or safety. METHODS: Studies were selected from systematic computerized literature searches performed in PubMed, Embase (Elsevier), Cochrane Central (EBSCO), Cumulative Index to Nursing and Allied Health Literature-CINAHL (EBSCO), and Web of Science (Thomson Reuters). Eligible studies included comparative studies that evaluated the design of a medication label to improve patient knowledge or safety. RESULTS: Of the 246 articles identified in the primary literature search, 14 studies were selected for data abstraction. Thirteen of these studies significantly impacted the patient understanding of medication labels. Three studies included a measure of patient safety in terms of medication adherence and dosing errors. The utilization of patient-centered language, pictograms/graphics, color/white space, or font optimization was seen to have the most impact on patient comprehension. CONCLUSION: It is essential to present medication information in an optimal manner for patients. This can be done by standardizing the content, display, and format of medication labels to improve understanding and medication usage. Evidence-based design principles can, therefore, be used to facilitate the standardization of the structure of label content for both print and electronic devices. However, more research needs to be done on validating the implications of label content display to measure its impact on patient safety. SYSTEMIC REVIEW REGISTRATION: PROSPERO CRD42022347510 ( http://www.crd.york.ac.uk/prospero/ ).

Exploring How Youth Use TikTok for Mental Health Information in British Columbia: Semistructured Interview Study With Youth.

BACKGROUND: TikTok (ByteDance) experienced a surge in popularity during the COVID-19 pandemic as a way for people to interact with others, share experiences and thoughts related to the pandemic, and cope with ongoing mental health challenges. However, few studies have explored how youth use TikTok to learn about mental health. OBJECTIVE: This study aims to understand how youth used TikTok during the COVID-19 pandemic to learn about mental health and mental health support. METHODS: Semistructured interviews were conducted with 21 youths (aged 12-24 years) living in British Columbia, Canada, who had accessed TikTok for mental health information during the COVID-19 pandemic. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed using an inductive, data-driven approach. RESULTS: A total of 3 overarching themes were identified describing youth's experiences. The first theme centered on how TikTok gave youth easy access to mental health information and support, which was particularly helpful during the COVID-19 pandemic to curb the effects of social isolation and the additional challenges of accessing mental health services. The second theme described how the platform provided youth with connection, as it gave youth a safe space to talk about mental health and allowed them to feel seen by others going through similar experiences. This helped normalize and destigmatize conversations about mental health and brought awareness to various mental health conditions. Finally, the last theme focused on how this information led to action, such as trying different coping strategies, discussing mental health with peers and family, accessing mental health services, and advocating for themselves during medical appointments. Across the 3 themes, youth expressed having to be mindful of bias and misinformation, highlighting the barriers to identifying and reporting misinformation and providing individualized advice on the platform. CONCLUSIONS: Findings suggest that TikTok can be a useful tool to increase mental health awareness, reduce stigma, and encourage youth to learn and address their mental health challenges while providing a source of peer connection and support. Simultaneously, TikTok can adversely impact mental health through repetitive exposure to mentally distressing content and misleading diagnosis and treatment information. Regulations against harmful content are needed to mitigate these risks and make TikTok safer for youth. Efforts should also be made to increase media and health literacy among youth so that they can better assess the information they consume online.

A mixed methods analysis of existing assessment and evaluation tools (AETs) for mental health applications.

Introduction: Mental health Applications (MH Apps) can potentially improve access to high-quality mental health care. However, the recent rapid expansion of MH Apps has created growing concern regarding their safety and effectiveness, leading to the development of AETs (Assessment and Evaluation Tools) to help guide users. This article provides a critical, mixed methods analysis of existing AETs for MH Apps by reviewing the criteria used to evaluate MH Apps and assessing their effectiveness as evaluation tools. Methods: To identify relevant AETs, gray and scholarly literature were located through stakeholder consultation, Internet searching via Google and a literature search of bibliographic databases Medline, APA PsycInfo, and LISTA. Materials in English that provided a tool or method to evaluate MH Apps and were published from January 1, 2000, to January 26, 2021 were considered for inclusion. Results: Thirteen relevant AETs targeted for MH Apps met the inclusion criteria. The qualitative analysis of AETs and their evaluation criteria revealed that despite purporting to focus on MH Apps, the included AETs did not contain criteria that made them more specific to MH Apps than general health applications. There appeared to be very little agreed-upon terminology in this field, and the focus of selection criteria in AETs is often IT-related, with a lesser focus on clinical issues, equity, and scientific evidence. The quality of AETs was quantitatively assessed using the AGREE II, a standardized tool for evaluating assessment guidelines. Three out of 13 AETs were deemed 'recommended' using the AGREE II. Discussion: There is a need for further improvements to existing AETs. To realize the full potential of MH Apps and reduce stakeholders' concerns, AETs must be developed within the current laws and governmental health policies, be specific to mental health, be feasible to implement and be supported by rigorous research methodology, medical education, and public awareness.

POND4Kids: a global web-based database for pediatric hematology and oncology outcome evaluation and collaboration.

The Pediatric Oncology Network Database, (www.pond4kids.org, POND), is a secure, web-based, multilingual pediatric hematology/oncology database created for use in countries with limited resources to meet various clinical data management needs including cancer registration, delivery of protocol-based care, outcome evaluation, and assessment of psychosocial support programs. Established as a part of the International Outreach Program at St. Jude Children's Research Hospital in Memphis, Tennessee, POND serves as a tool for oncology units to store patient data for easy retrieval and analysis and to achieve uniform data collection to facilitate meaningful comparison of information among centers. Launched in 2003, POND now has 233 sites registered with over 1,000 users in 66 countries. However, adoption and usage of POND varies widely among sites. This paper reviews some of the challenges to developing a global collaborative clinical platform based on the experiences of developing POND. The paper also presents a case study of POND use in Guatemala, where the Guatemalan National Oncology Unit (UNOP) has developed extensive internal and external global collaborations using POND.

Exploring Patient Journey Mapping and the Learning Health System: Scoping Review.

BACKGROUND: Journey maps are visualization tools that can facilitate the diagrammatical representation of stakeholder groups by interest or function for comparative visual analysis. Therefore, journey maps can illustrate intersections and relationships between organizations and consumers using products or services. We propose that some synergies may exist between journey maps and the concept of a learning health system (LHS). The overarching goal of an LHS is to use health care data to inform clinical practice and improve service delivery processes and patient outcomes. OBJECTIVE: The purpose of this review was to assess the literature and establish a relationship between journey mapping techniques and LHSs. Specifically, in this study, we explored the current state of the literature to answer the following research questions: (1) Is there a relationship between journey mapping techniques and an LHS in the literature? (2) Is there a way to integrate the data from journey mapping activities into an LHS? (3) How can the data gleaned from journey map activities be used to inform an LHS? METHODS: A scoping review was conducted by querying the following electronic databases: Cochrane Database of Systematic Reviews (Ovid), IEEE Xplore, PubMed, Web of Science, Academic Search Complete (EBSCOhost), APA PsycInfo (EBSCOhost), CINAHL (EBSCOhost), and MEDLINE (EBSCOhost). Two researchers applied the inclusion criteria and assessed all articles by title and abstract in the first screen, using Covidence. Following this, a full-text review of included articles was done, with relevant data extracted, tabulated, and assessed thematically. RESULTS: The initial search yielded 694 studies. Of those, 179 duplicates were removed. Following this, 515 articles were assessed during the first screening phase, and 412 were excluded, as they did not meet the inclusion criteria. Next, 103 articles were read in full, and 95 were excluded, resulting in a final sample of 8 articles that satisfied the inclusion criteria. The article sample can be subsumed into 2 overarching themes: (1) the need to evolve service delivery models in health care, and (2) the potential value of using patient journey data in an LHS. CONCLUSIONS: This scoping review demonstrated the gap in knowledge regarding integrating the data from journey mapping activities into an LHS. Our findings highlighted the importance of using the data from patient experiences to enrich an LHS and provide holistic care. To satisfy this gap, the authors intend to continue this investigation to establish the relationship between journey mapping and the concept of LHSs. This scoping review will serve as phase 1 of an investigative series. Phase 2 will entail the creation of a holistic framework to guide and streamline data integration from journey mapping activities into an LHS. Lastly, phase 3 will provide a proof of concept to demonstrate how patient journey mapping activities could be integrated into an LHS.

Applying Logic to the Healthcare Journey.

Cross-disciplinary approaches to remediate complex healthcare service delivery issues may have merit. This study aims to establish the potential benefits of applying service design and evaluative research concepts in healthcare. Specifically, this study aims to demonstrate how a Customer Journey Map and a Logic Model could be used in unison to identify and remedy service delivery gaps to reduce barriers to care. This study provides systems thinking approach to solving operational issues in healthcare.

A Human-Centered Physician Journey.

The COVID-19 pandemic has placed unprecedented strain on global health systems, and the ability to safely and effectively deliver care. Further, it has impacted the mental health of global populations, in particular healthcare providers (i.e., physicians, nurses). In a service delivery context, much can be learned about empathy both from a provider and patient lens. Thus, the literature was explored to see if the concept of journey mapping was used to illustrate the intersections and pain points of the clinical workflow along the physician journey.

Humanizing Big Data and Detailing Social Determinants of Health via Information Visualizations.

The pandemic has had devastating impacts on humanity and the global healthcare sector. An analysis into the social determinants of health, in particular racial and ethnic disparities may explain why certain population groups have been disproportionately affected by COVID-19. The objective of this study is to humanize and personify numerical data. Additionally, COVID-19 population data will be stratified via three data visualization tools (i.e., a persona, a journey map, Sankey diagram) to create a Visualized Combined Experience (VCE) Diagram to illustrate the micro, and macro, perspectives of marginalized individuals across the continuum of care.

Digital vaccine passports and digital health diplomacy: an online model WHO simulation.

In the wake of Coronavirus disease 2019 (COVID-19), several nations have sought to implement digital vaccine passports (DVPs) to enable the resumption of international travel. Comprising a minimum dataset for each unique individual, DVPs have the makings of a global electronic health record, broaching key issues involved in building a global digital health ecosystem. Debate simulations offer a safe, interactive space to foster participatory policy discussions for advancing digital health diplomacy. This study used an online simulation of a Model World Health Assembly to critically analyze the sociotechnical issues associated with the global implementation of DVPs, and to generate useful insights and questions about the role of diplomacy in global digital health. The debate arguments addressed and provided insights into the technological, scientific, ethical, legal, policy, and societal aspects of DVPs. Reflecting on the simulation, we discuss its opportunities and challenges for the digitalization, decolonization, decentralization, and democratization of participatory policymaking.

Stakeholders' views and opinions on existing guidelines on "How to Choose Mental Health Apps".

Background: Mental health Applications (Mhealth Apps) can change how healthcare is delivered. However, very little is known about the efficacy of Mhealth Apps. Currently, only minimum guidance is available in Assessment and Evaluation Tools (AETs). Therefore, this project aims to understand AET developers' perspectives and end users' experiences and opinions on "how to choose a Mhealth App". Objective: The primary objectives were: (1) obtaining stakeholder's opinions and experiences of development and use of AETs for Mhealth Apps, their weaknesses and strengths, and barriers in their implementation of Mhealth Apps; (2) the experiences of App users, their analyzation and, obstacles in the use of apps; and (3) to quantify themes related to choosing a Mhealth App. Methods: This qualitative study, used a sampling method to recruit six stakeholders (one App developer, two AET developers, an individual with lived experience of mental health illness, and two physicians) who were interviewed using a topic guide. These were examined by researchers (CT, WK, & FN) using thematic content analysis. Additionally, an anonymous online survey of 107 individuals was conducted. Findings: Our analyses revealed six main themes: (a) needs and opportunities; (b) views on Mhealth apps; (c) views & opinions on AETs; (d) implementation barriers; (e) system of evaluation and; (f) future directions. The first key concept was, all stakeholders agreed that Apps could significantly impact mental health and that end-users were unaware of mental health AETs and Apps. Secondly, due to commercial interests, end-users reliability of App evaluations requires clear conflict-free guidelines. Thirdly, AETs should be evaluated and developed through a rigorous methodology. Finally, stakeholders shared insights into future developments for AETs and Mhealth Apps. Additionally, online survey respondents chose a "health professional" as their preferred source of guidance in selecting a Mhealth app (84%) and best suited to develop guidelines (70%). Conclusion: The interviews and survey highlight the need for Mhealth Apps to be regulated and the importance of health professionals' engagement in the implementation process. Similarly, without well-defined roles for App evaluations within the health care system, it is unlikely that AETs will have wider spread use and impact without risk.

Improving the histopathologic diagnosis of pediatric malignancies in a low-resource setting by combining focused training and telepathology strategies.

BACKGROUND: Accurate diagnosis is critical for optimal management of pediatric cancer. Pathologists with experience in pediatric oncology are in short supply in the developing world. Telepathology is increasingly used for consultations but its overall contribution to diagnostic accuracy is unknown. PROCEDURE: We developed a strategy to provide a focused training in pediatric cancer and telepathology support to pathologists in the developing world. After the training period, we compared trainee's diagnoses with those of an experienced pathologist. We next compared the effectiveness of static versus dynamic telepathology review in 127 cases. Results were compared by Fisher's exact test. RESULTS: The diagnoses of the trainee and the expert pathologist differed in only 6.5% of cases (95% CI, 1.2-20.0%). The overall concordance between the telepathology and original diagnoses was 90.6% (115/127; 95% CI, 84.1-94.6%). CONCLUSIONS: Brief, focused training in pediatric cancer histopathology can improve diagnostic accuracy. Dynamic and static telepathology analyses are equally effective for diagnostic review.

International telepharmacy education: another venue to improve cancer care in the developing world.

OBJECTIVE: In developed countries, pharmacists play a crucial role in designing and implementing cancer treatments as part of a multidisciplinary oncology team. However, developing countries have a shortage of pharmacists, and their role is generally limited to dispensing and selling drugs. The aim of this study was to investigate the feasibility of providing clinical pharmacy educational activities via international teleconferencing to improve cancer care in developing countries. MATERIALS AND METHODS: Meticulous preparation and intense promotion of the workshop were done in Egypt before the telepharmacy conferences began. Multiple connectivity tests were performed to resolve technical problems. Nine telepharmacy conferences were delivered during 3-h sessions that were held on three consecutive days. Talks were subsequently made available via Web streaming. Attendees were requested to complete a survey to measure their satisfaction with the sessions. RESULTS: The teleconference was attended by a total of 345 persons, and it was subsequently reviewed online via 456 log-in sessions from 10 countries. Technical issues (e.g., poor auditory quality) were resolved on the first day of the event. The rate of attendees' responses on the survey was 30.1%, and satisfaction with the event was generally good. CONCLUSIONS: Telecommunication is a relatively inexpensive approach that may improve pharmacy practices, especially those used to treat patients with cancer in developing countries. Special attention to patient-based telepharmacy education, including the use of cost-effective technology, should be considered.

The global need for education on cancer health.

Non-communicable diseases, such as cancer, diabetes, and chronic cardiovascular and respiratory diseases, remain a major cause of mortality and morbidity worldwide resulting in more than 36 million deaths annually. Of primary importance in the reduction of this pain and suffering is the local use of education to eliminate misconception, enable prevention, reduce the associated social stigmas, and prepare a workforce that can care for its own people as well as feed an economic engine helping to combat the poverty that so often determines the availability and quality of care. The need to develop these local capabilities is especially acute for children, as 80% of pediatric cancer cases occur in low- and middle-income countries, places where the survival rates are lowest.

Cure4Kids for Kids: school-based cancer education outreach.

In 2006, St. Jude Children's Research Hospital created Cure4Kids for Kids, a school-based outreach program. The objectives of this community education program are to teach about cancer and healthy lifestyles and to inspire an interest in science and health-related careers. A multidisciplinary team of St. Jude and outside experts developed and pilot tested age-appropriate educational materials and activities with 4th grade students. Eight schools and more than 800 children have participated in the program since 2006. Teachers and students have demonstrated a very positive response to the program for it being both fun and educational. Cure4Kids for Kids resources have been collected into a teacher's kit and are now freely available online at www.cure4kids.org/kids.

Cure4Kids for Kids: preliminary results on evaluating knowledge acquisition and knowledge retention.

Since 2006 St. Jude Children's Research Hospital has been developing Cure4Kids for Kids, a school-based outreach program to educate children about cancer and healthy lifestyles with a focus on cancer prevention. An evaluation of student knowledge acquisition and retention for the program at the Grade-4 level was conducted during the 2010-2011 school year. Preliminary results of this evaluation are outlined with some of the challenges for long-term program evaluation of cancer prevention programs.