Identifiable Health Information Research Articles

Evaluation of online text-based information resources of gynaecological cancer symptoms.

Gynaecological cancer symptoms are often vague and non-specific. Quality health information is central to timely cancer diagnosis and treatment. The aim of this study was to identify and evaluate the quality of online text-based patient information resources regarding gynaecological cancer symptoms. A targeted website search and Google search were conducted to identify health information resources published by the Australian government and non-government health organisations. Resources were classified by topic (gynaecological health, gynaecological cancers, cancer, general health); assessed for reading level (Simple Measure of Gobbledygook, SMOG) and difficulty (Flesch Reading Ease, FRE); understandability and actionability (Patient Education Materials Assessment Tool, PEMAT, 0-100), whereby higher scores indicate better understandability/actionability. Seven criteria were used to assess cultural inclusivity specific for Aboriginal and Torres Strait Islander people; resources which met 3-5 items were deemed to be moderately inclusive and 6+ items as inclusive. A total of 109 resources were identified and 76% provided information on symptoms in the context of gynaecological cancers. The average readability was equivalent to a grade 10 reading level on the SMOG and classified as 'difficult to read' on the FRE. The mean PEMAT scores were 95% (range 58-100) for understandability and 13% (range 0-80) for actionability. Five resources were evaluated as being moderately culturally inclusive. No resource met all the benchmarks. This study highlights the inadequate quality of online resources available on pre-diagnosis gynaecological cancer symptom information. Resources should be revised in line with the recommended standards for readability, understandability and actionability and to meet the needs of a culturally diverse population.

Unveiling the Digital Landscape of CAR-T Therapies in Multiple Myeloma Using Social Media Insights

Introduction: The rapid evolution of novel chimeric antigen receptor T-cell (CAR-T) therapies, including Carvykti (ciltacabtagene autoleucel) and Abecma (idecabtagene vicleucel), have revolutionized the treatment landscape for multiple myeloma (MM) patients. These cutting-edge therapies have demonstrated remarkable efficacy in clinical trials, representing a significant advancement in the field. However, their real-world impact on patient and physician experiences, and perceptions remain important topics of ongoing investigation. In recent years, social media platforms have emerged as valuable sources of real-time data and patient perspectives, providing an unprecedented opportunity for researchers to gain insights into physician and patient perceptions around these emerging CAR-T therapies. This study aims to perform a comprehensive digital analysis to measure sentiment expression by different health care stakeholders and to identify health information needs related to MM CAR-T therapies. Methods: This digital analysis utilized publicly available data related to CAR-T therapies approved for the treatment of relapsed or refractory MM from various online sources related to CAR-T therapies. The data was captured using the web indexing tool Talkwalker. The analysis covered the time period from May 21, 2021 to May 21, 2023. Quantitative analysis involved applying filters and Boolean search terms to segment the data and generate figures such as share of voice, language and media type distribution, and treatment and MM mentions over time. Additionally, a qualitative assessment was conducted by reviewing posts related to the key topics of interest. Individuals who self-identify as healthcare professionals (HCPs) based on their bio, social media name, byline in news articles, or other indications were included in stakeholder analysis. Results: Out of the 471.5K MM posts generated over the 2-year study period, 47,909 posts (10%) were about CAR-T therapy, and 13,117 posts specifically commented on either Carvykti (55%) or Abecma (45%). In terms of specialty, hematologists were the primary contributors (47%), followed by oncologists (16%) and pharmacists (6%). CAR-T therapy was most referenced in posts discussing efficacy, safety, duration, and time to cytokine release syndrome (CRS), with a higher number of posts mentioning Carvykti (57%) compared to Abecma (43%). The most prominent key themes of pressing challenges and needs mentioned among CAR-T therapy posts were cost (60.5%), post-CAR-T care (38.6%), access (37.5%), education (6.7%), and quality of life (6.4%). Both Carvykti and Abecma were frequently mentioned alongside access and cost, although access (60%) was more prominent with Carvykti and cost (61%) with Abecma. Among HCPs, the most significant key theme of pressing challenges and needs was post-CAR-T infusion care considerations (58.6%), such as extended hospital stays to manage immune-mediated toxicities such as CRS and neurotoxicity, the risk of cytopenia and infections, and strategies to mitigate these risks. Management strategies mentioned included earlier and more aggressive supportive care, the use of cytokine-targeting therapies such as tocilizumab for any grade CRS, steroids such as dexamethasone for immune effector cell-associated neurotoxicity syndrome, and prophylactic antiseizure medications for all patients regardless of neurotoxicity. In the category of Diversity, Equity, & Inclusion, both Carvykti and Abecma were mentioned similarly on various topics, including access to CAR-T therapies (87% vs. 74%), diversity in clinical trials (19% vs. 17%), geographic location implications (9% vs. 15%), and racial disparities (3% vs. 4%). Conclusions: The study findings highlight the importance of demystifying cost perceptions against the added value to patients, HCPs and payers, and implementing comprehensive post-CAR-T care protocols aligned with the concerns expressed in social media discussions for improvement in CAR-T therapies for multiple myeloma. By leveraging the power of social media data, this study offers valuable real-world insights that can inform clinical decision-making, enhance patient-centered care, and contribute to the development of strategies to overcome challenges associated with CAR-T therapies in multiple myeloma.

Content Quality of YouTube Videos About Metastatic Breast Cancer in Young Women: Systematic Assessment.

Young women with metastatic breast cancer (MBC) are part of a digitally connected generation yet are underserved in terms of information needs. YouTube is widely used to find and identify health information. The accessibility of health-related content on social media together with the rare and marginalized experiences of young women with MBC and the digital media practices of younger generations imply a considerable likelihood that young women with MBC will seek information and community on the internet. This study aims to assess the content quality of MBC YouTube videos and to identify themes in the experiences of young women with MBC based on YouTube videos. A systematic assessment of MBC YouTube videos using the search term "metastatic breast cancer young" was conducted in August 2021. The search was performed in an incognito browser and with no associated YouTube or Google account. Search results were placed in order from most to least views. Title, date uploaded, length, poster identity, number of likes, and number of comments were collected. Understandability and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT); information reliability and quality were assessed with DISCERN. Themes, sponsorships, and health care professionals' and patients' narratives were reported. A total of 101 videos were identified. Of these, 78.2% (n=79) included sponsorships. The mean PEMAT scores were 78.8% (SD 15.3%) and 43.1% (SD 45.2%) for understandability and actionability, respectively. The mean DISCERN score was 2.44 (SD 0.7) out of 5. Identified themes included treatment (n=67, 66.3%), family relationship (n=46, 45.5%), and motherhood (n=38, 37.6%). YouTube videos about young women with MBC are highly understandable but demonstrate moderate rates of actionability, with low reliability and quality scores. Many have a commercial bias. While web-based materials have limitations, their potential to provide patient support is not fully developed. By acknowledging their patients' media habits, health care professionals can further develop a trusting bond with their patients, provide a space for open and honest discussions of web-based materials, and avoid any potential instances of confusion caused by misleading, inaccurate, or false web-based materials.

Reproducibility of Facial Information in Three-Dimensional Reconstructed Head Images: An Exploratory Study.

Facial information acquired via three-dimensional reconstruction of head computed tomography (CT) data may be considered personal information, which can be problematic for neuroimaging studies. However, no study has verified the relationship between slice thickness and face reproducibility. This study determined the relationship and match rate between image slice thickness and face detection accuracy of face-recognition software in facial reconstructed models. Head CT data of 60 cases comprising entire faces obtained under conditions of non-contrast and 1-mm slice thickness were resampled to obtain 2-10-mm slice-thickness data. Facial models, reconstructed by image thresholding, were acquired from the data. We performed face detection tests per slice thickness on the models and calculated the face detection rate. The reconstructed facial models created from 1-mm slice-thickness data and other slice thicknesses were used as training and test data, respectively. Match confidence scores were obtained via three programs, match rates were calculated per slice thickness, and generalized estimating equations were used to evaluate the match rate trend. In general, the face detection rates for the 1-10-mm slice thicknesses were 100, 100, 98.3, 98.3, 95.0, 91.7, 86.7, 78.3, 68.3, and 61.7 %, respectively. The match rates for the 2-10-mm slice thicknesses were 100, 98.3, 98.3, 95.0, 85.0, 71.7, 53.3, 28.3, and 16.7 %, respectively. The reconstructed models tended to have higher match rates as the slice thickness decreased. Thus, thin-slice head CT imaging data may increase the possibility of the information becoming personally identifiable health information.

Learning Needs of Patients with Cancer and a Pre-Existing Autoimmune Disease Who Are Candidates to Receive Immune Checkpoint Inhibitors.

Patients with pre-existing autoimmune disorders and cancer considering immune checkpoint inhibitors (ICIs) need to receive balanced information about the benefits and risk of developing immune-related adverse events (irAEs) and flare-ups of their autoimmune disease. To assess the learning needs of patients with cancer and pre-existing autoimmune disease regarding ICI treatment, we interviewed 29 patients with autoimmune disease and cancer from a comprehensive cancer center, of whom 20 had received ICI and 9 were candidates to receive ICI at a US Cancer Center. In-depth semi-structured interviews were conducted from August 2021 and January 2022. Interviewee's opinions and preferences about content and information delivery methods were collected. We recorded and transcribed interviews and analyzed them using thematic analysis. Half of the participants were female, and their median (SD) age was 62.9 (±10.9) years. The identified health information needs included the following: (1) information on irAEs and autoimmune disease flare-ups; (2) benefits of ICI; (3) ICI mechanism in the context of autoimmune disease; (4) management of flare-ups; (5) reasons for stopping or modifying cancer or autoimmune disease treatment; (6) likelihood of autoimmune disease progression or organ damage; and (7) lifestyle changes that could help avoid irAEs. Patients who had received ICI and those who had not yet received treatment reported similar needs, although patients who had received ICI had more questions about cancer treatment modifications. Patients also expressed the need to better understand when to contact their provider and how to share information with multiple providers. Most patients wanted to receive information in visual formats for review at home and at their own pace. Patients expressed interest in having educational tools to facilitate shared decision-making with their physicians, and they identified several areas of health information concerning therapy with ICI. They also highlighted the importance of communication among their various providers.

Enhancement and Implementation of a Health Information Technology Module to Improve the Discrete Capture of Cancer Staging in a Diverse Regional Health System.

Cancer staging is the foundation for all cancer management decisions. For real-time use, stage must be embedded in the electronic health record as a discrete data element. The objectives of this quality improvement (QI) initiative were to (1) identify barriers to utilization of an existing discrete cancer staging module, (2) identify health information technology (HIT) solutions to support discrete capture of cancer staging data, and (3) increase capture across the oncology enterprise in our diverse health system. Six sigma QI methodologies were used to define barriers and solutions to improve discrete cancer staging. Design thinking principles informed solution development to test prototypes. Two multidisciplinary teams of disease-specific clinicians within GI and genitourinary conducted phased testing pilots to determine health system solutions. Solutions were expanded to all oncology specialties across our health system. Baseline average discrete staging capture across our health system was 31%. Poor workflow efficiency, limited accountability, and technical design gaps were key barriers to timely, complete staging. Implementation of more than 25 design enhancements to a HIT solution and passive user alerts led to a postimplementation capture rate of 58% across 55 outpatient clinics involving more than 400 clinicians. We identified key barriers to discrete data capture and designed solutions through iterative use of QI methodologies and disease-specific pilots. After implementation, discrete capture of cancer staging nearly doubled across our diverse health system. This approach is scalable and transferable to other initiatives to develop and implement clinically relevant HIT solutions across a diverse health system.

Student Health and Social Care Professionals’ Health Literacy Knowledge: An Exploratory Study

Health literacy is essential for shared decision-making and improved health outcomes, and patients with inadequate health literacy often need additional support from health and social care professionals. Despite global calls for developing tertiary-level health literacy education, the extent of this in Australian health and social care professional degrees is unknown. This research explored students' health literacy knowledge across five health and social care professional disciplines. A web-based questionnaire was disseminated to student health and social care professionals enrolled in one of two Australian universities. Questions explored students' factual and conceptual health literacy knowledge, and responses were inductively themed and reported descriptively. Of the 90 students who participated, the depth of health literacy knowledge was low. Students frequently identified understanding as components of health literacy; however, most students did not identify health information access, appraisal and use. Additionally, students' knowledge of helping patients with inadequate health literacy was limited. Adjusting patient education to their health literacy level and evaluating patient understanding was poorly understood. Without a solid understanding of fundamental health literacy principles, newly-graduated health and social care professionals will be poorly equipped to facilitate patients' health literacy-related challenges in the community. Further exploration of health literacy education is urgently recommended to identify areas for improvement.

Predicting information usefulness in health information identification from modal behaviors

Finding useful health information should be the highest priority when identifying health information. Predicting information usefulness will significantly improve the effectiveness and efficiency of health information identification, which plays a vital role in fighting against misinformation. Modal behaviors, such as gesture and gaze, are promising indicators of usefulness since they deliver a reliable, thorough, natural, and direct process of user cognitive processing. Therefore, this study aimed to use gesture and gaze behaviors to predict whether information is useful for health information identification. Twenty-four college students were recruited to freely search for information using a smartphone to identify the truthfulness of four propositions (two were true and two were false) about public health epidemics. The participants' gesture behavior, gaze behavior, and information usefulness as perceived by themselves were collected. Based on user cognition, the process of information usefulness judgment was placed into two phases: skimming and reading. Thirty-one features derived from modal behaviors in each phase were extracted. Feature optimization based on the Mann-Whitney U test and random forest was performed. Five common algorithms were used to construct information usefulness prediction models, and these models were compared by the F1_score. Finally, dwell time and gaze entropy in the reading phase were the most important gesture and gaze features respectively. BP neural network was selected to build a unimodal model based on gesture, and gradient boosting decision tree was selected to build a unimodal model based on gaze and a multimodal model combining both. These models all achieved F1_score above 77% and were applicable to different scenarios in health information identification. The model based on gesture could satisfy strong technology or legal constrains, the model based on gaze was ideal for AR, MR or metaverse applications, and the model combining both offered an alternative for multimodal human-computer interaction.

Googling Patients

Googling Patients

Genomic Privacy: Advocating for the Convergence of Legal and Technical Solutions

Genomic Privacy:Advocating for the Convergence of Legal and Technical Solutions Can Kockan (bio), Dov Greenbaum (bio), Danielle Lee (bio), and Mark Gerstein (bio) The economy of DNA: consumer genomics and its risks Genomic data collection and analysis is an incredibly valuable sector within the information economy, yet genomic information has never been more pervasive nor publicly accessible. Just this past spring, the National Institutes of Health's "All of Us" program announced that it would make nearly one hundred thousand unique and diverse whole genome sequences available for researchers, and several other public efforts have similarly set out to collect and disseminate enormous amounts of genomic data for research.1 Beyond such institutions looking to innocuously advance their research and even beyond amateur genomic sleuths combing through our genetic information to try and crack unsolved crimes,2 there also exists reason to be concerned about matters relating to genetic privacy on the corporate side. [End Page 246] Companies such as MyHeritage and Ancestry. com collect client DNA in various degrees of quantity and quality, at times even using this data for commercial purposes and selling clients' genomic information to drug companies for hundreds of millions of dollars.3 In addition to the growing size of both public and private DNA databases, these databases have also grown increasingly more revealing as research continues to uncover additional correlations between genes and disease and hereditary conditions. For example, identical twins share 100 percent of their DNA, parents and siblings share up to 61 percent of their DNA, and even distant third cousins share up to 2.2 percent of their DNA.4 Thus, if even one of these individuals chooses to disclose their genomic information, they are in effect disclosing not only theirs but also much of the genomes of their close relatives. One study showed how the genetic information of the majority of Americans of European ancestry can be identified through their distant relatives' DNA that already exists in various public and private current databases.5 The result of such data is an ever-expanding genomic panopticon, as predicted by the late Supreme Court Justice Antonin Scalia.6 Following the COVID-19 pandemic, the genomic information consumed and produced around the world has only further contributed to expanding the realm of genomic data available to us. Genetic tests have become especially de rigueur when traversing borders, and it was even reported recently that various heads of state refused PCR testing when meeting the Russian president Putin out of fear that Russian intelligence might abuse and misuse the resulting genetic information.7 Yet, this fear is not limited to politicians, celebrities, or sports personalities whose genetic information could contain exploitable knowledge.8 In fact, given all the sunk costs for the infrastructure of pandemic genetic testing, some countries will likely continue to find excuses to collect and examine the DNA of visitors for a host of potentially actionable genetic data, including controversial correlations like propensity to violence or depression.9 As such, now would be the best time to enhance genetic data protection and privacy laws before we become too complacent with giving away our genes at the border, or anywhere else. A brief history of the technical and legal solutions for genomic privacy U.S. legislators have long assumed the primary role of protecting our genetic data, from instituting federal regulations like the Federal Genetic Information Nondiscrimination Act of 2008 (GINA) to state laws including those that target the limited use of genetic information in areas of health insurance, employment, and even direct-to-consumer genetic testing companies like 23andMe.10 However, laws are slow to change, and regulations are slow to implement. The Health Insurance Portability and Accountability Act (HIPAA) is exemplary of slowness in responding to outdated regulations. The 1996 law outlines limitations on the use of protected health information (PHI). Under HIPAA's Privacy Rule, individually identifiable health information is protected. Deidentified information is exempt from this rule, as is other data deemed unidentifiable.11 This definition is anachronistic in our world of big data, and even heretofore perceived benign data has long been shown to be as revealing as PHI.12 Practically speaking, these regulations are also...

Current Topics in Health Care Law

Current Topics in Health Care Law

Accessibility of web‐based health information for women in midlife from culturally and linguistically diverse backgrounds or with low health literacy

ObjectiveTo measure the accessibility of Australian web‐based health information for midlife women including those from culturally and linguistically diverse (CALD) backgrounds or with low health literacy. MethodsSearch terms relating to midlife health were entered into Google Australia to identify health information websites. The content of the first two results pages was assessed using the European Commission's quality criteria for health websites. Readability was assessed using the Flesch Readability Ease Score with Grade 8 accepted as the average Australian reading level. ResultsSixteen websites were evaluated. Accessibility scores ranged between 0 and 8. The Victorian Government's health website Better Health Channel and the Jean Hailes for Women's Health website contained the most accessible information, each scoring 8, but were both ‘difficult to read’ on the readability test. Four websites included written resources in languages other than English and two had information in audio‐visual format in languages other than English. ConclusionsThere is a gap in accessible online health information for Australian women from CALD backgrounds or those with low health literacy. Implications for public healthHealthy behaviour changes in midlife may lead to better health in older age. More accessible health information resources are needed for women in midlife from CALD backgrounds and those with low health literacy.

Health Information Sources Influencing Health Literacy in Different Social Contexts across Age Groups in Northern Thailand Citizens.

Health literacy is an essential social determinant of health and has been associated with positive health outcomes. While many sources of health information are widely available, people of different ages also have diverse social contexts and preferences for health information sources. This study aimed to identify health information sources and socio-demographics influencing health literacy in different social contexts across age groups: 15–29 years (young), 30–59 years (middle-age), and ≥60 years (elderly). We obtained secondary data from a cross-sectional study in northern Thailand from March to August 2019. Multivariate linear regression with age group subgroup analysis was used to determine factors associated with general health literacy by the Thai version of the health literacy questionnaire. Receiving health information from physicians was significantly associated with higher general health literacy in young (β 6.45, 95%CI 0.44–12.45; p = 0.035) and elderly (β 5.18, 95%CI 1.84–8.52; p = 0.002) groups, while receiving health information from health volunteers was significantly associated with a higher general health literacy in the middle-aged (β 2.89, 95%CI 0.38–5.39; p = 0.024) group. Although younger participants showed more frequent access to health information via the media than the other age groups, there were no media sources significantly linked with their general health literacy. Health information from physicians is a vital source of health information.

Mining the Data: Exploring Rural Patients’ Attitudes about the Use of Their Personal Information in Research

Background This study examines rural patients’ perceived importance of knowing or being consulted about researchers’ access and use of their personal data (identifiable and de-identified health information, and identifiable and de-identified non-health information) across five scenarios. This study also examines their views on stewardship or governance of their personal information by researchers in their healthcare systems. Methods We conducted a survey by mail. Data were analyzed using descriptive statistics. Multivariable regression analyses were conducted across each scenario and type of personal data with the same variables included in each model. Results The majority of participants said it was “very important/absolutely essential” to know the purpose of the study, to be asked every time, and to know the policies governing researcher access and use of their identifiable health information. Just over two-thirds of respondents thought it “very important/absolutely essential” to know who serves on the data governance committee and to have a community member serve. Distrust in healthcare organizations was positively correlated with the scenarios while willingness to give permission to donate leftover biological specimens was negatively correlated. Conclusion Our study findings indicate that the type of personal information being accessed and used generally matters to 1,407 patients living in rural Pennsylvania. We also demonstrate that knowing their healthcare organizations’ governance policies and practices for managing their personal data is important to many rural Pennsylvania patients. Biomedical researchers need to recognize and attend to those differences as much as possible in order to expand opportunities for and participation in research by residents of these rural communities. Supplemental data for this article is available online at

EU health information progress: the harvest of policy supporting projects and networks

BackgroundThe European Commission supports the initiation of health information related projects and networks serving comparative population health monitoring and health system performance assessment. Many of these projects and networks have produced relevant data, standards, methods, indicators and knowledge that may be lost as these networks become inactive.The aim of this project retrieval and review was to identify health information projects and networks and their produced output; and subsequently facilitate systematic access to this information for policy makers, researchers and interested others via a web-based repository.MethodsThe scope of this article covers 1. population health oriented topics and 2. health system/health services oriented topics. Out of scope are specific infectious diseases; individual rare diseases; and the occurrence and effects of specific medical treatments, interventions and diagnostics; cohort studies; or studies focusing on research methods.We searched bibliographic databases and EU project databases for policy supporting projects and networks and selected those fulfilling our inclusion criteria after more in-depth inspection. We searched for their outputs. In addition, we reviewed country participation in these projects and networks.ResultsWe identified 36 projects and networks, 16 of which are population health oriented, 6 are health systems and services oriented and 14 cover both. Their total volume of output is not easily retrievable, as many project websites have been discontinued. Some networks and/or their outputs have found continuance within European agencies and/or national institutions. Others are struggling or have gone lost, despite their policy relevance. Participation in the projects was not evenly distributed across Europe. Project information was made available through the Health Information Portal.ConclusionsEU funded projects and networks have contributed greatly to the evidence-base for policy by providing comparative health information. However, more action is needed to evaluate and conserve their outputs and facilitate continued contribution to the field after project funding stops. The realization of a sustainable infrastructure for these projects and networks is urgent. The Health Information Portal can play an important role in conserving and reusing health information. Information inequalities may exist across Europe but need further investigating.

Coccidioidomycosis Knowledge and Behaviors of California Hispanic Farm Workers

ABSTRACT (1) Describe knowledge, attitudes, beliefs, and behaviors related to coccidioidomycosis (Valley fever, VF) reported by farm workers in a highly endemic area to design and evaluate prevention messages and (2) identify health information sources preferred by farm workers to disseminate VF prevention messages. There were 119 primarily Mexican-born residents of two migrant farm labor housing centers in Kern County, who completed an interviewer-administered survey on VF knowledge, attitudes, beliefs, and behaviors in 2017. The 73% of participants aware of VF demonstrated a knowledge score of 53%. Over 90% erroneously believed VF was associated with pesticide exposure; approximately two-thirds believed that wearing a bandana mask was protective. Over half of respondents believed that VF was contagious, could be contracted from contaminated food or water, and caused gastrointestinal symptoms. Of those aware of VF, 75% expressed concern about becoming infected because of where they lived and working outdoors. Working outdoors in dusty conditions was the most commonly reported risk-associated work practice. Among 67 participants reporting use of respiratory protection, 94% indicated they wear a bandana; most male participants did not wear face coverings in dusty conditions. The most frequent protective work practice was wetting soil. Preferred sources of health information included television; family, friend, or co-worker; healthcare provider; and radio. Farm workers reported multiple risk factors for VF. Results identified several areas of poor knowledge, risk behavior, and preferred channels of prevention messages. Important protective behaviors are not under the control of farm workers; engagement with employers is essential.

Health Information Needs of Tuberculosis Patients in Lagos State, Nigeria

ABSTRACT This study is aimed at identifying health information needs of tuberculosis (TB) patients, their preferred sources for receiving health information, and the factors influencing the choice source used. A descriptive cross-sectional study was the design adopted. The study population was TB patients older than 18 years old who were accessing health-care service in the Directly Observed Treatment (DOT) Center. A total of one hundred and ninety-eight (198) patients participated in the study and a questionnaire was used to collect the data. The data were analyzed using SPSS software. The findings of the study show that the health information needs of tuberculosis patients are as follows: prevention of tuberculosis (53.0%); causes of tuberculosis disease (48.1%); and drug information about the disease (47.6%). The outcome also revealed that the respondents chose medical doctors and nurses as the most preferred source of information, with accessibility as the main factor influencing the information source user. The study outcome demonstrated that tuberculosis patients acknowledge the need for health information to improve their health conditions. Therefore, health-care professionals should redirect their educational programs and efforts on educating the TB patients on the various types of information sources that could enhance their health conditions.

Health Information Seeking Strategies among Individuals with Spinal Cord Injury

<h3>Research Objectives</h3> To explore and identify how individuals with spinal cord injury (SCI) seek and critically evaluate online health information. <h3>Design</h3> Qualitative descriptive study. <h3>Setting</h3> This study was conducted in the general community setting. <h3>Participants</h3> Community-dwelling individuals with SCI were recruited across Canada. Participants had a mean age of 48 years; 12 participants were female, 8 participants experienced non-traumatic SCI. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> Data were collected via one-on-one, semi-structured interviews with a sub-sample of 20 participants enrolled in a larger, clinical trial. Analysis of the transcripts was undertaken using a five-step process of thematic analysis. <h3>Results</h3> Our analysis identified four main themes that described how individuals with SCI seek and critically evaluate online health information. Themes included (1) using Google's search engine, (2) using health organization websites, (3) cross-referencing information found online, and (4) matching key words. <h3>Conclusions</h3> By identifying health information seeking strategies among individuals with SCI, these findings can inform researchers and clinicians on the existing ways with which this population utilizes internet-based resources for their health information seeking needs. Long-term, these findings can help guide future health literacy and eHealth literacy programs and interventions. <h3>Author(s) Disclosures</h3> We report no real or perceived conflicts of interest.

A review of menstrual sex education and management in women with congenital adrenal hyperplasia

ABSTRACT Congenital adrenal hyperplasia (CAH) encompasses a range of autosomal recessive inherited enzyme deficiencies that impact cortisol biosynthesis pathways. Although reported as a rare and lifelong disorder, it holds chronic health risks for individuals that can influence menstruation. The purpose of this environmental scan and integrative literature review was to identify health information pertinent to CAH and menstruation in order to inform health providers, increase patient education, and promote menstrual wellbeing. Analysis identified that while information about menses is reported, information about menstrual irregularities and their management in adolescents and women with CAH is uncertain. Furthermore, there is insufficient good quality research and knowledge on CAH and menstruation to inform health providers in their practice with this population. The need for individuals with CAH to access evidence-informed information is constrained by the state of current understanding and limitations in knowledge translation. The importance of having trustworthy and safe spaces in which to ask questions and draw on ethically sound, language appropriate, and evidence-informed material is paramount in supporting women’s confidence and wellbeing across their lifetime. We encourage the building of stronger relationships between researchers, health providers, support groups and individuals to improve knowledge translation and dissemination regarding CAH and menstruation.

The Case for Medical Device Cybersecurity Hygiene Practices for Frontline Personnel

The Case for Medical Device Cybersecurity Hygiene Practices for Frontline Personnel