Mortality risk information and health-seeking behavior during an epidemic.

In a context where pessimistic survival perceptions have been widespread as a result of the HIV/AIDS epidemic (Fig. 1 A), we study vaccine uptake and other health behaviors during the recent COVID-19 pandemic. Leveraging a longitudinal cohort study in rural Malawi that has been followed for up to 25 y, we document that a 2017 mortality risk information intervention designed to reduce pessimistic mortality perceptions (Fig. 1 B) resulted in improved health behavior, including COVID-19 vaccine uptake (Fig. 1 C). We also report indirect effects for siblings and household members. This was likely the result of a reinforcing process where the intervention triggered engagement with the healthcare system and stronger beliefs in the efficacy of modern biomedical treatments, which led to the adoption of health risk reduction behavior, including vaccine uptake. Our findings suggest that health information interventions focused on survival perceptions can be useful in promoting health behavior and participation in the formal healthcare system, even during health crises-such as the COVID-19 pandemic-that are unanticipated at the time of the intervention. We also note the importance of the intervention design, where establishing rapport, tailoring the content to the local context, and spending time with respondents to convey the information contributed to the salience of the message.

Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association.

The evolution of the electronic health record, combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization. Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association's engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.

Wearable sensor supports in-situ and continuous monitoring of plant health in precision agriculture era.

Plant health is intricately linked to crop quality, food security and agricultural productivity. Obtaining accurate plant health information is of paramount importance in the realm of precision agriculture. Wearable sensors offer an exceptional avenue for investigating plant health status and fundamental plant science, as they enable real-time and continuous in-situ monitoring of physiological biomarkers. However, a comprehensive overview that integrates and critically assesses wearable plant sensors across various facets, including their fundamental elements, classification, design, sensing mechanism, fabrication, characterization and application, remains elusive. In this study, we provide a meticulous description and systematic synthesis of recent research progress in wearable sensor properties, technology and their application in monitoring plant health information. This work endeavours to serve as a guiding resource for the utilization of wearable plant sensors, empowering the advancement of plant health within the precision agriculture paradigm.

Trusting information on cancer varies by source of information and political viewpoint.

PURPOSE: This study investigated how trusting information on cancer varies by the source of information and political viewpoint. METHODS: This study used cross-sectional survey data from the 2020 Health Information National Trends Survey (HINTS). The study comprised a sample of 2949 adults 18 years and older. The outcome variable was measured by assessing respondents' trust in cancer-related information from various sources, including religious organizations and leaders, government health agencies, charitable organizations, family or friends, and doctors. Political viewpoint was measured as liberal, moderate, and conservative. Multivariate linear probability models were estimated and adjusted for individual-level characteristics. RESULTS: Multivariate analysis found that conservatives (73%, 95% CI = 68-78%) were significantly less likely to trust information on cancer from government health agencies compared to liberals (84%, 95% CI = 80-88%). There was no statistically significant difference in trusting government health agencies between liberals and moderates (80%, 95% CI = 76-84%). Both moderates (27%, 95% CI = 21-34%) and conservatives (34%, 95% CI = 29-39%) were more likely to trust information on cancer from religious organizations and leaders compared to liberals (19%, 95% CI = 13-24%). The relationship between political viewpoint and trust of doctors, family or friends, and charitable organizations were not statistically significant. CONCLUSION: Compared to liberals, conservatives are more likely to trust information on cancer from religious organizations and leaders and less likely to trust government health agencies when adjusting for other covariates. This finding emphasizes the role of political viewpoint in shaping individuals' perceptions of information sources and cancer-related information.

Cancer fatalism, social media informational awareness, and education.

OBJECTIVE: Understand if cancer fatalism among adult social media users in the United States is linked to social media informational awareness and if the relationship varies by education level. METHODS: Cross-sectional data from the 2022 Health Information National Trends Survey (n = 3,948) were analyzed using multivariable linear probability models. The study population was defined as social media users active within the past year. The outcome variable was cancer fatalism and the predictor variables were social media informational awareness and education level. RESULTS: Participants with low social media informational awareness were 9% (95% CI = 3, 15), 6% (95% CI = 1, 11), and 21% (95% CI = 14, 27) percentage points more likely to agree that it seems like everything causes cancer, you cannot lower your chances of getting cancer, and there are too many cancer prevention recommendations to follow, respectively. Participants with a college degree or higher level of education and who reported high social media informational awareness were the least likely to agree that everything causes cancer (60%; 95% CI = 54, 66), you cannot lower your chances of getting cancer (14%; 95% CI = 10, 19), and there are too many cancer prevention recommendations to follow (52%; 95% CI = 46, 59). CONCLUSION: Social media informational awareness was associated with lower levels of cancer fatalism among adult social media users. College graduates with high social media informational awareness were the least likely to report cancer fatalism.

Pediatric Urologists' Views on the US News & World Report.

PURPOSE: Our goal was to understand the general attitudes of pediatric urologists regarding the US News & World Report rankings for Best Children's Hospitals in Urology. MATERIALS AND METHODS: We performed a cross-sectional survey study distributed via email to active and candidate members of the Societies of Pediatric Urology from October 2022 to December 2022. This anonymous survey was iteratively developed to contain multiple choice questions gathering information on demographics, personal interaction with the rankings system, and about attitudes toward the rankings across various domains. RESULTS: Of the 515 members surveyed, 264 pediatric urologists responded to the survey for a response rate of 51%. There was representation from all sections of the AUA and across all age categories and practice models. Overall, of the respondents, 71% disagreed that the rankings had led to improvements in care and 75% disagreed that programs were reporting their data honestly. Additionally, 71% believed the rankings are inaccurate in reflecting patient outcomes. The majority (86%) of respondents stated they would support organized efforts to withdraw from the rankings. This was significantly different by ranking cohort, with 78% from top 10 programs endorsing withdrawal vs 89% from those programs not in the top 10. CONCLUSIONS: Our survey found that most pediatric urologists would support efforts to withdraw from participating in the rankings and believe that programs are dishonest in reporting their data. The majority also do not believe a survey can adequately distinguish between programs. This highlights a clear need for a critical reevaluation of the rankings.

Exploring the impact of primary care utilization and health information exchange upon treatment patterns and clinical outcomes of glioblastoma patients.

PURPOSE: There is limited literature describing care coordination for patients with glioblastoma (GBM). We aimed to investigate the impact of primary care and electronic health information exchange (HIE) between neurosurgeons, oncologists, and primary care providers (PCP) on GBM treatment patterns, postoperative outcomes, and survival. METHODS: We identified adult GBM patients undergoing primary resection at our institution (2007-2020). HIE was defined as shared electronic medical information between PCPs, oncologists, and neurosurgeons. Multivariate logistic regression analyses were used to determine the effect of PCPs and HIE upon initiation and completion of adjuvant therapy. Kaplan-Meier and multivariate Cox regression models were used to evaluate overall survival (OS). RESULTS: Among 374 patients (mean age ± SD: 57.7 ± 13.5, 39.0% female), 81.0% had a PCP and 62.4% had electronic HIE. In multivariate analyses, having a PCP was associated with initiation (OR: 7.9, P < 0.001) and completion (OR: 4.4, P < 0.001) of 6 weeks of concomitant chemoradiation, as well as initiation (OR: 4.0, P < 0.001) and completion (OR: 3.0, P = 0.007) of 6 cycles of maintenance temozolomide thereafter. Having a PCP (median OS [95%CI]: 14.6[13.1-16.1] vs. 10.8[8.2-13.3] months, P = 0.005) and HIE (15.40[12.82-17.98] vs. 13.80[12.51-15.09] months, P = 0.029) were associated with improved OS relative to counterparts in Kaplan-Meier analysis and in multivariate Cox regression analysis (hazard ratio [HR] = 0.7, [95% CI] 0.5-1.0, P = 0.048). In multivariate analyses, chemoradiation (HR = 0.34, [95% CI] 0.2-0.7, P = 0.002) and maintenance temozolomide (HR = 0.5, 95%CI 0.3-0.8, P = 0.002) were associated with improved OS relative to counterparts. CONCLUSION: Effective care coordination between neurosurgeons, oncologists, and PCPs may offer a modifiable avenue to improve GBM outcomes.

Disparities in Mammography Screening: Analyzing Barriers to Access Using Individual Patient Perspectives and the Health Belief Model.

OBJECTIVE: The objective of our study is to explore Nepali women's beliefs about access to mammography screening, and motivations to get screened or not. This work was intended to be hypothesis generating for subsequent quantitative analysis and to inform policy and decision-making to improve access. METHODS: We conducted structured qualitative interviews among nine Nepali women in the Northeast of the United States receiving care at a local community health center and among nine white women receiving mammography care at a large academic medical center in the Northeast. We analyzed the transcripts using a mixed deductive (content analysis) and inductive (grounded theory) approach. Deductive codes were generated from the Health Belief Model which states that a person's belief in the real threat of a disease with their belief in the effectiveness of the recommended health service or behavior or action will predict the likelihood the person will adopt the behavior. We compared and contrasted qualitative results from both groups. RESULTS: We found that eligible Nepali women who had not received mammography screening had no knowledge of its availability and its importance. Primary care physicians emerged as a critical link in addressing this disparity: trust was found to be high among Nepali women with their established primary care provider. CONCLUSION: The findings of this study suggest that the role of primary care practitioners in conversations around the importance and eligibility for mammography screening is of critical importance, especially for underserved groups with limited health knowledge of screening opportunities and potential health benefits. Follow-up research should focus on primary care practices.

In this study, we interviewed Nepali women in a small, rural state in in the Northeast of the United States who are eligible for breast cancer screening yet do not seek it to better understand their motivations f. We also interviewed women who did get mammography screening to understand their motivations. We found that eligible Nepali women who had not received mammography screening had no knowledge of its availability and its importance. Primary care physicians emerged as a critical link in addressing this disparity: trust was found to be high among Nepali women with their established primary care provider. The findings of this study suggest that the role of primary care practitioners in conversations around the importance and eligibility for mammography screening is of critical importance.

Towards malaria elimination: a reflection about digital notification modules to improve malaria cases notification speed and follow-up in the Brazilian Amazon region.

BACKGROUND: Health information systems (HIS) are a pivotal element in epidemiological surveillance. In Brazil, malaria persists as a public health challenge, with 99% of its occurrences concentrated in the Amazon region, where cases are reported through the HIS Sivep-Malaria. Recent technological advancements indicate that case notifications can be expedited through more efficient systems with broader coverage. The objective of this study is to analyse opportunities for notification within Sivep-Malaria and explore the implementation of mobile electronic devices and applications to enhance the performance of malaria case notifications and use. METHODS: This descriptive study analyses data on malaria-positive cases in the Brazilian Amazon from 2004 to 2022. Malaria Epidemiological Surveillance System (Sivep-Malaria) data were used. The Brazilian Amazon region area is approximately 5 million km2 across nine different states in Brazil. Data entry opportunities were assessed by considering the time difference between the 'date of data entry' and the 'date of notification.' Descriptive statistics, including analyses of means and medians, were conducted across the entire Amazon region, and for indigenous population villages and gold mining areas. RESULTS: Between 2004 and 2022, 6,176,878 new malaria cases were recorded in Brazil. The average data entry opportunity throughout the period was 17.9 days, with a median of 8 days. The most frequently occurring value was 1 day, and 99% of all notifications were entered within 138 days, with 75.0% entered within 20 days after notification. The states with the poorest data entry opportunities were Roraima and Tocantins, with averages of 31.3 and 31.0 days, respectively. For indigenous population villages and gold mining areas, the median data entry opportunities were 23 and 15 days, respectively. CONCLUSIONS: In malaria elimination, where surveillance is a primary strategy for evaluating each reported case, reducing notification time, enhancing data quality and being able to follow-up cases through computerized reports offer significant benefits for cases investigation. Technological improvements in Sivep-Malaria could yield substantial benefits for malaria control in Brazil, aiding the country in achieving disease elimination and fulfilling the Sustainable Development Goals.

Optimization of Electronic Health Record Usability Through a Department-Led Quality Improvement Process.

BACKGROUND: Electronic health records (EHR) have become commonplace in medicine. A disconnect between developers and users while creating the interface often fails to create a product that captures clinical workflow, and issues become apparent with implementation. Optimization allows collaboration of clinicians and informaticists after implementation, but documentation of success has only been at the institutional level. METHODS: A 4-month, department-wide EHR optimization was conducted with information technology (IT). Optimizations were developed from an intensive quality improvement process involving all levels of clinicians and clinical staff. The optimizations were then categorized as accommodations (department adjusted workflow to EHR), creations (IT developed new workflows within EHR), discoveries (department found workflows within EHR), and modifications (IT changed workflows within EHR). Departmental productivity, defined as number of visits, charges, and payments, was standardized to ratios prior to the COVID-19 pandemic and evaluated by Taylor's change point analysis. Significant improvements were defined as shifts (change points), trends (5 or more consecutive values above/below the mean), and values outside 95% CIs. RESULTS: The 124 optimizations were categorized as 43 accommodations, 13 creations, 54 discoveries, and 14 modifications. Productivity ratios of monthly charges (0.74 to 1.28) and payments (0.83 to 1.58) significantly improved with the optimization efforts. Monthly visit ratios increased (0.65 to 0.98) but did not change significantly. CONCLUSION: Departmental collaboration with organizational IT for EHR optimization focused on detailed analysis of how workflows can impact productivity. Discovery optimization predominance indicates many solutions to EHR usability problems were already in the system. A large proportion of accommodation optimizations reinforced the need for better developer-user collaboration before implementation.Annals Early Access.

HIV Information Avoidance, HIV Stigma, and Medical Mistrust among Black Sexual Minority Men in the Southern United States: Associations with HIV Testing.

Uptake of HIV testing is a critical step in the HIV prevention and treatment care cascade. Barriers to HIV testing, however, remain and innovative research in this area is warranted to improve uptake of testing. As such, we investigated the role of HIV information avoidance - a novel construct potentially related to HIV testing. We analyzed this construct in relation to other factors known to impact HIV testing, namely HIV stigma and medical mistrust. Multiple linear regression analyses indicated that HIV information avoidance was negatively associated with HIV testing, while medical mistrust was positively associated with HIV testing. HIV testing stigma was not associated with HIV testing. This work contributes to the developing literature on HIV information avoidance and its relationships with HIV stigma and HIV testing uptake. Further, these findings can inform HIV testing interventions which often do not focus on HIV information avoidance. Future research on the mechanisms of information avoidance that are amenable to intervention, and the temporal ordering of the relationship between information avoidance and HIV testing is warranted.

What drives older men who have sex with men in China away from AIDS information?

A worrying phenomenon has emerged recently: more people are deliberately avoiding rather than seeking information regarding acquired immunodeficiency syndrome (AIDS). This is the first study to explore behaviors related to AIDS information avoidance and the potential influential factors among older men who have sex with men (MSM). We enrolled 11 older MSM from Wuhan, the largest city in central China, from January to March 2023 using a phenomenological method. This qualitative research was conducted using face-to-face semi-structured interviews. AIDS information avoidance was commonly observed among the respondents. Behaviors related to AIDS information avoidance included avoiding AIDS-related information, ignoring known AIDS information, and avoiding medical care. The main factors associated with AIDS information avoidance included information overload, high-risk sexual behaviors, over-optimism, fear of disclosure, and age. China should provide AIDS information in a manner suitable for older MSM, pay more attention to MSM over the age of 70 years, those who are not open about their sexual orientation and those who are too optimistic, and strengthen the censorship of AIDS information.

Exploring the foundations of a digital health information service for patients with inflammatory bowel disease: a mixed method study in Gravitate-Health.

BACKGROUND: Providing relevant digital health information of high quality may promote treatment adherence and self-management for patients with inflammatory bowel disease. The development of digital health services is optimised by considering end users' needs. AIM: To identify key aspects required for digital promotion of inflammatory bowel disease patients' self-management by exploring their health information needs and the preferences of both patients and healthcare professionals in relation to the digital provision of inflammatory bowel disease health services. METHODS: Data from an audit of 1,481 electronic health record summaries from an inflammatory bowel disease help line, 17 semi-structured interviews with inflammatory bowel disease patients and 2 focus group interviews with 11 healthcare professionals were analysed. RESULTS: Patients primarily contacted the hospital due to concerns about symptoms, examinations and tests, and medicines. Their concerns appeared to vary according to diagnosis, gender, age and disease duration. The interviews identified two overarching themes: (1) the available health information and patients' health information needs, and (2) whishes, thoughts and preferences for a digital solution in IBD care with relevant and individualised information. CONCLUSIONS: The findings delineate key aspects for developing a suitable digital health information service. Patients seek information from healthcare professionals about treatment; however, in a digital solution, they want access to relevant and practical information about the disease, treatment and self-management. Both patients and healthcare professionals saw opportunities for increasing health data availability to patients. However, healthcare professionals expressed concerns about adapting, maintaining and ensuring the relevance of patient health information without increasing their workload and, thus, reducing quality of care.

Assessment of Internet Available Patient Information on Chronic Pancreatitis Using the Ensuring Quality Information for Patients Tool: A Systematic Search and Evaluation.

INTRODUCTION: Chronic pancreatitis (CP) is a relevant chronic medical problem whereby delayed presentation and poor patient understanding can cause adverse effects. Quality of patient information available on the internet about CP is not known. METHODS: A systematic review of the information about CP available online using the search term "chronic pancreatitis" in using the search engine Google has been conducted. The quality of the top 100 websites returned from this search term was analysed using the validated Ensuring Quality Information for Patients (EQIP) tool (maximum score 36). Additional items were included in the website analysis specific to CP. RESULTS: In total, 45 websites were eligible for analysis. The median EQIP score of the websites was 16 (interquartile range 12-19.5). The majority of websites originated from the USA and the United Kingdom with 31 and 11 websites, respectively. Provision of additional information was inconsistent, with most websites covering information regarding aetiology and advocating alcohol and tobacco cessation, but only few reporting on more complex issues. CONCLUSION: Internet available information about CP is of limited quality. There is an immediate need for high quality, patient targeted, and informative literature accessible on the internet about this topic.

Validating the Delone and Mclean's model in a developing country's infectious disease pandemic context.

BACKGROUND: This study aimed at validating the updated DeLone and McLean's information systems success model (D&MISS) in a developing country's infectious disease pandemic preparedness and response context. The findings from this study are relevant to inform policies and actions for enhancing developing countries' the Health Information System's (HIS) performance, and specifically to improve their future pandemic readiness and response. The study sought to respond to a key research question: to what extent can the D&MISS model provide evidence to enhance the HIS's infectious disease pandemic readiness and response in developing countries? METHOD: A cross-sectional study design that involved a multi-stage probability sampling approach to select eligible healthcare workers was applied. Conducted in Nigeria and Liberia, 576 primary healthcare workers, out of the proposed 600, participated, representing a response rate of 96%. The D&MISS model served as the theoretical underpinning for this study, and nine hypothesized relationships were stated before the study based on the interconnectedness of the model's six dimensions. Structural Equation Modelling (SEM) data analysis using the Partial Least Square approach was used to determine if hypothesized relationships were supported. RESULTS: 70% of the observed variance in the Net Benefit construct was explained by the predictive influence of the Use and User Satisfaction constructs. The Use construct had a slightly more substantial predictive influence than the User Satisfaction construct. Eight of the nine hypothesized relationships were supported, except for the relationship between Information Quality and Use. The relationships between System Quality and Use and User Satisfaction and Net Benefit had the highest beta coefficient, statistically significant at p < 0.05. CONCLUSION AND RELEVANCE: The D&MISS model demonstrated its relevance in providing evidence on the gaps of the HISs regarding future pandemic preparedness and response. However, from a future research opportunity, its enhancement and modifications with context-specific dimensions peculiar to developing countries will improve its ability to provide more context-specific evidence to improve pandemic preparedness and response for developing countries.

Trends in caesarean section rates in Europe from 2015 to 2019 using Robson's Ten Group Classification System: A Euro-Peristat study.

OBJECTIVE: To assess changes in caesarean section (CS) rates in Europe from 2015 to 2019 and utilise the Robson Ten Group Classification System (TGCS) to evaluate the contribution of different obstetric populations to overall CS rates and trends. DESIGN: Observational study utilising routine birth registry data. SETTING: A total of 28 European countries. POPULATION: Births at ≥22 weeks of gestation in 2015 and 2019. METHODS: Using a federated model, individual-level data from routine sources in each country were formatted to a common data model and transformed into anonymised, aggregated data. MAIN OUTCOME MEASURES: By country: overall CS rate. For TGCS groups (by country): CS rate, relative size, relative and absolute contribution to overall CS rate. RESULTS: Among the 28 European countries, both the CS rates (2015, 16.0%-55.9%; 2019, 16.0%-52.2%) and the trends varied (from -3.7% to +4.7%, with decreased rates in nine countries, maintained rates in seven countries (≤ ± 0.2) and with increasing rates in 12 countries). Using the TGCS (for 17 countries), in most countries labour induction increased (groups 2a and 4a), whereas multiple pregnancies (group 8) decreased. In countries with decreasing overall CS rates, CS tended to decrease across all TGCS groups, whereas in countries with increasing rates, CS tended to increase in most groups. In countries with the greatest increase in CS rates (>1%), the absolute contributions of groups 1 (nulliparous term cephalic singletons, spontaneous labour), 2a and 4a (induction of labour), 2b and 4b (prelabour CS) and 10 (preterm cephalic singletons) to the overall CS rate tended to increase. CONCLUSIONS: The TGCS shows varying CS trends and rates among countries of Europe. Comparisons between European countries, particularly those with differing trends, could provide insight into strategies to reduce CS without clinical indication.

Talking with clinicians about online cancer information: a survey of cancer patients and surrogate information seekers.

OBJECTIVES: To describe patients' and surrogate information seekers' experiences talking to clinicians about online cancer information. To assess the impact of clinicians telling patients or surrogate seekers not to search for information online. DESIGN: Cross-sectional survey. SAMPLE: A total of 282 participants, including 185 individuals with cancer and 97 surrogate seekers. METHODS: Individuals were recruited through a broad consent registry and completed a 20-min survey. FINDINGS: Cancer patients and surrogate seekers did not differ significantly in their experiences talking with clinicians about online cancer information. Nearly all patients and surrogate seekers who were told by a clinician not to go online for cancer information did so anyway. IMPLICATIONS: Interventions for improving cancer information seeking and communication with clinicians should target both patients and surrogate seekers. Clinicians should be educated about effective ways to communicate with patients and surrogate seekers about online cancer information.

Health information-seeking experience in people with head and neck neoplasms undergoing treatment: a qualitative study.

PURPOSE: To describe the health information-seeking experience and its influencing factors of people with head and neck neoplasms undergoing treatment. METHODS: This was a descriptive phenomenology study. Participants were recruited by purposive sampling. The semistructured interviews and all observation results were recorded. The data were analysed using Colaizzi's method. RESULTS: Fourteen participants were selected. We identified four themes that illustrate factors that influence the health information-seeking behaviour of participants: patients' awareness of health information needs, patients' competence, doctor-patient communication, and online advertising interference. We also determined the value of different types of information and patients' information needs and sources. CONCLUSION: These findings can help professionals understand patients' behaviours and think about how to deliver practical information support in a network environment to guide patients in continuous information seeking while taking specific factors into account.

Public involvement in Australian clinical trials: A systematic review.

BACKGROUND: Public involvement enhances the relevance, quality, and impact of research. There is some evidence that public involvement in Australian research lags other countries, such as the United Kingdom. The purpose of the systematic review was to establish the rates and describe the characteristics of public involvement in Australian clinical trials. METHODS: We reviewed evidence of public involvement in all Australian randomised controlled trials published in the first 6 months of 2021. To determine the quality of public involvement, we used the five-item short-form version of the Guidance of Reporting Involvement Patients and the Public, version 2. RESULTS: In total, 325 randomised controlled trials were included, of which 17 (5%) reported any public involvement. Six trials reported public involvement in setting the research aim and seven in developing study methods. The authors of one study reflected on the overall role and influence of public involvement in the research. CONCLUSION: Rate of public involvement in Australian clinical trials is seemingly substantially lower than those reported in countries with similar advanced public health care systems, notably the United Kingdom. Our observations may be explained by a lack of researcher skills in how to involve the public and the failure by major funding agencies in Australia to mandate public involvement when deciding on how to award grant funding.

What influences trust in and understanding of clinical trials? An analysis of information and communication technology use and online health behavior from the Health Information National Trends Survey.

BACKGROUND: Using information and communication technologies to seek, discuss, and share health-related information influences people's trust and knowledge of several health practices. However, we know little about the associations between individuals' information and communication technology use and their perceptions of trust and knowledge of clinical trials. Examining these associations may lead to the identification of target audiences and channels for developing effective educational interventions and campaigns about clinical trials. METHODS: In this study, we analyzed Health Information National Trends Survey data to document perceptions of clinical trial-related knowledge and trust that were recently added as questions in this annual national survey of US adults. We also examined correlates of these clinical trial perceptions that included sociodemographic factors and individuals' use of information and communication technologies to seek health information, discuss such information with their healthcare providers, and share the information in their network. RESULTS: More than 90% of participants had no or limited perceived knowledge about clinical trials. Knowledge was higher among those who seek or discuss health-related information online. Differences in perceived knowledge and trust emerged for some racial/ethnic subgroups and other demographic factors. Providers were considered the most trusted source of information (73.6%), followed by health organizations (19.4%) and social support (7.1%). Trust in health organizations compared to health providers was higher among those who used online resources to share health information online with others. Trust in social support was significantly higher among those who used information and communication technologies to communicate about health. CONCLUSION: Based on these findings, we recommend developing online resources about clinical trials to be distributed through social media. These resources should facilitate a dialogue and be targeted to several groups considering their information and communication technologies' use.