Social Media, Digital Health Literacy, and Digital Ethics in the Light of Health Equity

Objective: Social media is used in the context of healthcare, for example in interventions for promoting health. Since social media are easily accessible they have potential to promote health equity. This paper studies relevant factors impacting on health equity considered in social media interventions. Methods: We searched for literature to identify potential relevant factors impacting on health equity considered in social media interventions. We included studies that reported examples of health interventions using social media, focused on health equity, and analyzed health equity factors of social media. We identified Information about health equity factors and targeted groups. Results: We found 17 relevant articles. Factors impacting on health equity reported in the included papers were extracted and grouped into three categories: digital health literacy, digital ethics, and acceptability. Conclusions: Literature shows that it is likely that digital technologies will increase health inequities associated with increased age, lower level of educational attainment, and lower socio-economic status. To address this challenge development of social media interventions should consider participatory design principles, visualization, and theories of social sciences

Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review

Objectives: Using participatory health informatics (PHI) to detect disease outbreaks or learn about pandemics has gained interest in recent years. However, the role of PHI in understanding and managing pandemics, citizens’ role in this context, and which methods are relevant for collecting and processing data are still unclear, as is which types of data are relevant. This paper aims to clarify these issues and explore the role of PHI in managing and detecting pandemics. Methods: Through a literature review we identified studies that explore the role of PHI in detecting and managing pandemics. Studies from five databases were screened: PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), IEEE Xplore, ACM (Association for Computing Machinery) Digital Library, and Cochrane Library. Data from studies fulfilling the eligibility criteria were extracted and synthesized narratively. Results: Out of 417 citations retrieved, 53 studies were included in this review. Most research focused on influenza-like illnesses or COVID-19 with at least three papers on other epidemics (Ebola, Zika or measles). The geographic scope ranged from global to concentrating on specific countries. Multiple processing and analysis methods were reported, although often missing relevant information. The majority of outcomes are reported for two application areas: crisis communication and detection of disease outbreaks. Conclusions: For most diseases, the small number of studies prevented reaching firm conclusions about the utility of PHI in detecting and monitoring these disease outbreaks. For others, e.g., COVID-19, social media and online search patterns corresponded to disease patterns, and detected disease outbreak earlier than conventional public health methods, thereby suggesting that PHI can contribute to disease and pandemic monitoring

How Participatory Health Informatics Catalyzes One Digital Health

Objective: To identify links between Participatory Health Informatics (PHI) and the One Digital Health framework (ODH) and to show how PHI could be used as a catalyst or contributor to ODH. Methods: We have analyzed the addressed topics within the ODH framework in previous IMIA Yearbook contributions from our working group during the last 10 years. We have matched main themes with the ODH's framework three perspectives (individual health and wellbeing, population and society, and ecosystem). Results: PHI catalysts ODH individual health and wellbeing perspective by providing a more comprehensive view on human health, attitudes, and relations between human health and animal health. Integration of specific behavior change techniques or gamification strategies in digital solutions are effective to change behaviors which address the P5 paradigm. PHI supports the population and society perspective through the engagement of the various stakeholders in healthcare. At the same time, PHI might increase a risk for health inequities due to technologies inaccessible to all equally and challenges associated with this. PHI is a catalyst for the ecosystem perspective by contributing data into the digital health data ecosystem allowing for analysis of interrelations between the various data which in turn might provide links among all components of the healthcare ecosystem. Conclusion: Our results suggest that PHI can and will involve topics relating to ODH. As the ODH concept crystalizes and becomes increasingly influential, its themes will permeate and become embedded in PHI even more. We look forward to these developments and co-evolution of the two frameworks.publishedVersio

Willingness to test for BRCA1/2 in High Risk Women: Influenced by Risk Perception and Family Experience, rather than by Objective or Subjective Numeracy?

Genetic testing for breast and ovarian cancer can help target prevention programs, and possibly reduce morbidity and mortality. A positive result of BRCA1/2 is a substantial risk factor for breast and ovarian cancer, and its detection often leads to risk reduction interventions such as increased screening, prophylactic mastectomy and oophorectomy. We examined predictors of the decision to undergo cancer related genetic testing: perceived risk, family risk of breast or ovarian cancer, and numeracy as predictors of the decision to test among women at high risk of breast cancer. Stepwise regression analysis of survey responses from 459 women registered in the Cancer Genetics Network revealed greater likelihood to test for women with more family history, higher perceived risk of mutation, or Ashkenazi descent. Neither subjective nor objective numeracy was associated with the decision to test, although we replicated an earlier finding that subjective numeracy predicted willingness to pay for testing. Findings underscore the need for genetic counselling that disentangles risk perception from objective information to promote better decision-making in the context of genetic testing. Highlighting these factors is crucial for public health campaigns, as well as to clinic-based testing and direct-to-consumer testing. (PsycINFO Database Record (c) 2016 APA, all rights reserved

Charting the internal landscape: Affect associated with thoughts about major life domains explains life satisfaction

Studies of happiness have examined the impact of demographics, personality and emotions accompanying daily activities on life satisfaction. We suggest that how people feel while contemplating aspects of their lives, including their weight, children and future prospects, is a promising yet uncharted territory within the internal landscape of life satisfaction. In a sample of 811 American women, we assessed women’s feelings when thinking about major life domains and frequency of thoughts about each domain. Regression and dominance analyses showed that emotional valence of thoughts about major life domains was an important predictor of current and prior life satisfaction, surpassing, in descending order, demographics, participants’ feelings during recent activities, and their neuroticism and extraversion scores. Domains thought about more frequently were often associated with greater emotional valence. These results suggest that life satisfaction may be improved by modifying emotional valence and frequency of thoughts about life domains. Moreover, these thoughts appear to be an important and relatively stable component of well-being worthy of further study

Subjective but not objective numeracy influences willingness to pay for BRCA1/2 genetic testing

A positive test result for BRCA1/2 gene mutation is a substantial risk factor for breast and ovarian cancer. However, testing is not always covered by insurance, even for high risk women. Variables affecting willingness to pay (WTP) have implications for clinic-based and direct-to-consumer testing. The relative impact of objective and subjective numeracy on WTP, in the context of worry, perceived risk (of having the mutation and developing breast cancer) and family history, was examined in 299 high-risk women, not previously tested for BRCA1/2. Objective and subjective numeracy correlated positively with one another, yet only subjective numeracy correlated (positively) with WTP. This could not be explained by educational level or worry. In line with the numeracy result, other objective factors including family history, age, and Ashkenazi descent were not correlated with WTP. Perceived risk of having a mutation was also correlated with WTP, though perceived risk of developing breast cancer was not, perhaps because it lacks direct connection with testing. Thus, subjective confidence in the ability to interpret test results and perceived risk of a positive test result are more important drivers in paying for BRCA1/2 testing than factors more objective and/or further removed from the testing itself (e.g., perceived risk of developing cancer, family history). Findings underscore the need for genetic counselling that makes probabilistic information accessible and intelligible, so as to build confidence and promote accurate perception of mutation risk and ultimately better decision-making

Artificial Intelligence for Participatory Health: Applications, Impact, and Future Implications

Objective: Artificial intelligence (AI) provides people and professionals working in the field of participatory health informatics an opportunity to derive robust insights from a variety of online sources. The objective of this paper is to identify current state of the art and application areas of AI in the context of participatory health. Methods: A search was conducted across seven databases (PubMed, Embase, CINAHL, PsychInfo, ACM Digital Library, IEEExplore, and SCOPUS), covering articles published since 2013. Additionally, clinical trials involving AI in participatory health contexts registered at clinicaltrials.gov were collected and analyzed. Results: Twenty-two articles and 12 trials were selected for review. The most common application of AI in participatory health was the secondary analysis of social media data: self-reported data including patient experiences with healthcare facilities, reports of adverse drug reactions, safety and efficacy concerns about over-the-counter medications, and other perspectives on medications. Other application areas included determining which online forum threads required moderator assistance, identifying users who were likely to drop out from a forum, extracting terms used in an online forum to learn its vocabulary, highlighting contextual information that is missing from online questions and answers, and paraphrasing technical medical terms for consumers. Conclusions: While AI for supporting participatory health is still in its infancy, there are a number of important research priorities that should be considered for the advancement of the field. Further research evaluating the impact of AI in participatory health informatics on the psychosocial wellbeing of individuals would help in facilitating the wider acceptance of AI into the healthcare ecosystem

Invasive Prenatal Diagnostic Testing Recommendations are Influenced by Maternal Age, Statistical Misconception and Perceived Liability

Funding policy and medico-legal climate are part of physicians’ reality and might permeate clinical decisions. This study evaluates the influence of maternal age and government funding on obstetrician/gynecologist recommendation for invasive prenatal testing (i.e. amniocentesis) for Down syndrome (DS), and its association with the physician’s assessment of the risk of liability for medical malpractice unless they recommend amniocentesis. Israeli physicians (N = 171) completed a questionnaire and provided amniocentesis recommendations for women at 18 weeks gestation with normal preliminary screening results, identical except aged 28 and 37. Amniocentesis recommendations were reversed for the younger (‘yes’ regardless of testing results: 6.4%; ‘no’ regardless of testing results: 31.6%) versus older woman (‘yes’ regardless of testing results: 40.9%; ‘no’ regardless of testing results: 7.0%; χ2 = 71.55, p < .01). About half of the physicians endorsed different recommendations per scenario; of these, 65.6% recommended amniocentesis regardless of testing results for the 37-year-old woman. Physicians routinely performing amniocentesis and those advocating for amniocentesis for all women ≥ age 35 were approximately twice as likely to vary their recommendations per scenario. Physicians who perceived risk of liability for malpractice as large were nearly one-and-a-half times more likely to vary recommendations. The results indicate physicians’ recommendations are influenced by maternal age, though age is already incorporated in prenatal DS risk evaluations. The physician’s assessment of the risk that they will be sued unless they recommend amniocentesis may contribute to this spurious influence

Creative destruction in science

Drawing on the concept of a gale of creative destruction in a capitalistic economy, we argue that initiatives to assess the robustness of findings in the organizational literature should aim to simultaneously test competing ideas operating in the same theoretical space. In other words, replication efforts should seek not just to support or question the original findings, but also to replace them with revised, stronger theories with greater explanatory power. Achieving this will typically require adding new measures, conditions, and subject populations to research designs, in order to carry out conceptual tests of multiple theories in addition to directly replicating the original findings. To illustrate the value of the creative destruction approach for theory pruning in organizational scholarship, we describe recent replication initiatives re-examining culture and work morality, working parents\u2019 reasoning about day care options, and gender discrimination in hiring decisions. Significance statement It is becoming increasingly clear that many, if not most, published research findings across scientific fields are not readily replicable when the same method is repeated. Although extremely valuable, failed replications risk leaving a theoretical void\u2014 reducing confidence the original theoretical prediction is true, but not replacing it with positive evidence in favor of an alternative theory. We introduce the creative destruction approach to replication, which combines theory pruning methods from the field of management with emerging best practices from the open science movement, with the aim of making replications as generative as possible. In effect, we advocate for a Replication 2.0 movement in which the goal shifts from checking on the reliability of past findings to actively engaging in competitive theory testing and theory building. Scientific transparency statement The materials, code, and data for this article are posted publicly on the Open Science Framework, with links provided in the article