Ethics of Medical Archival Internet Research Data.

Medical research based on internet archive data, which in some ways is quite different from other data-based studies, is becoming more and more common. Despite its uniqueness and the challenges that characterize it, clear ethical rules designed to guide practitioners in this field have not yet been written. This article points to the lacuna that exists in legal and ethical texts today and offers an ethically balancing alternative. Among other features, the balance is based on the famous three laws of robotics by Asimov and a series of values, including transparency, accountability, fairness, and privacy.

The quality of German - language patient decision aids for oncological patients on the internet.

BACKGROUND: Previous studies have already shown that decision aids are a suitable tool for patient decision-making. The aim of this work is to conduct an online search for freely available, German-language patient decision aids (PDAs) for cancer patients, followed by an assessment of their quality. For this purpose, a rating tool that is as manageable as possible was developed on the basis of already existing quality criteria. METHODS: A simulated patient online search was conducted via the four most frequently used search engines in Germany. A quality assessment tool was created utilizing international and national guidelines, with a focus on practicality and manageability. Subsequently, the identified PDAs were rated by 4 raters based on the rating tool. RESULTS: The number of German-language oncology PDAs is low (n = 22 of 200 URLs) with limited variability regarding rare cancers. Most originate from non-profit organizations. The overall quality is low, as indicated by an average of 57.52% of the maximum evaluation points of the developed quality assessment tool. Reference values used to assess quality were related to e.g. support/effectiveness, adaptation, layout, etc. No qualitative differences were found regarding different publishers. Quality differed between PDAs of different length, with longer PDAs achieving better results. CONCLUSION: Overall, the supply and quality of German-language PDAs is not satisfactory. The assessment tool created in this study provides a solid, but more manageable basis, for developing and identifying high-quality PDAs. PRACTICE IMPLICATIONS: PDAs should be increasingly used by physicians in practice. For this, a quick qualitative assessment of PDAs in everyday life must be possible. Future research has to investigate especially the aspect of the length of a PDA in more detail.

Public awareness of cardiopulmonary resuscitation and cardiac arrest in association with Christian Eriksen.

OBJECTIVES: During the Union of European Football Association EURO 2020 Football Championship, Danish football player Christian Eriksen experienced a cardiac arrest on the field of play. With prompt intervention and cardiopulmonary resuscitation (CPR), Erikson had a positive outcome and survived the arrest. Our goal is to determine the extent to which this event informed the general population about cardiac arrests and CPR. STUDY DESIGN: This was a cross-sectional internet analysis. METHODS: First, Google Trends was used to identify the search interest of topics "Cardiopulmonary resuscitation," "Myocardial infarction," and disease "Cardiac arrest" worldwide from May 29, 2021, to June 19, 2021. Second, we downloaded Twitter data via Sprout Social using the keywords "CPR" and "cardiac arrest," which are presented as the absolute number of tweets. An ARIMA model was used to forecast expected search volumes. RESULTS: The following week, there was an increase of 91.72% (95% confidence interval [CI] 89.01-94.93) for "Cardiac arrest" above expected values, an 80.67% (95% CI 75.84-85.5) increase for "Cardiopulmonary resuscitation," and a 65.50% (95% CI 62.98-68.02) increase for "Myocardial infarction." Within Twitter, there was a peak increase in daily tweets using "CPR" by 184,706 (95% CI 181,933-187,479) beyond expected values and a peak increase in the daily tweets using "cardiac arrest" by 73,126 (95% CI 72,499-73,752). CONCLUSION: Although all cardiac arrests are undesirable, public knowledge of the positive effects of CPR could contribute to a means of promoting and increasing the desire for CPR awareness as well as its application.

Challenging encounters in clinical dentistry: a qualitative study investigating online reviews of patient satisfaction with Norwegian dentists.

OBJECTIVE: Mapping key themes that characterize challenging and positive encounters in dental practice using online reviews of patient satisfaction. MATERIALS AND METHODS: 11,764 online patient reviews of dental encounters, consisting of an overall satisfaction rating (1-5 stars) and a free-text response, were collected from the web-site Legelisten.no. The reviews were split into two sets: reviews from patients with low satisfaction (1-2 stars) representing challenging encounters vs. patients with high satisfaction (4-5 stars) representing positive encounters. A qualitative thematic analysis was used to analyse the text materials in the datasets. RESULTS: Five key themes to both challenging and positive patient encounters were identified: (1) Interpersonal factors, (2) Patient factors, (3) Dentist factors, (4) Situational factors, and (5) Consequences. These themes are discussed in light of their role in challenging and positive patient encounters, as well as previous studies of online reviews and patient satisfaction. CONCLUSIONS: Based on the patients' experiences with dental encounters, challenging encounters seem to arise when dentists' personality traits and communication skills fail to match the patients' expectations or preferences. It appears central to patient satisfaction that dentists are able to shift between different communication styles in order to adapt to the personality and preferences of the patients.

Perinatal depressive symptoms often start in the prenatal rather than postpartum period: results from a longitudinal study.

Depressive symptoms during and after pregnancy confer risks for adverse outcomes in both the mother and child. Postpartum depression is traditionally diagnosed after birth of the child. Perinatal depression is a serious, prevalent heterogeneous syndrome that can occur during the period from conception through several months after childbirth. Onset and course are not well understood. There is a paucity of longitudinal studies of the disorder that include the antenatal period in population-based samples. We used an Internet panel of pregnant women recruited in 2 cohorts; 858 ascertained in the first and 322 ascertained in the third trimesters of pregnancy. We recruited the second cohort in order to assure sufficient sample to examine depressive symptoms later in pregnancy and in the postpartum period. Assessments included standard psychometric measures, health history, and pregnancy experience. The Edinburgh Postnatal Depression Scale was used for the assessment of depressive symptoms. Nearly 10% of women entered the pregnancy with depressive symptoms. Prevalence was about the same at 4 weeks and 3 months postpartum. During pregnancy, prevalence increased to 16% in the third trimester. Among incident cases, 80% occurred during pregnancy, with 1/3 occurring in the first trimester. We describe predictors of incident depressive symptoms and covariates associated with time-to-onset which include health history (psychiatric and medical) and social support covariates. The majority of incident depressive symptoms occur during pregnancy rather than afterward. This finding underscores the mandate for mental health screening early in pregnancy and throughout gestation. It will be important to find safe and effective interventions that prevent, mitigate, or delay the onset of depressive symptoms that can be implemented during pregnancy.

Googling for Ticks and Borreliosis in Germany: Nationwide Google Search Analysis From 2015 to 2018.

BACKGROUND: Borreliosis is the most frequently transmitted tick-borne disease in Europe. It is difficult to estimate the incidence of tick bites and associated diseases in the German population due to the lack of an obligation to register across all 16 federal states of Germany. OBJECTIVE: The aim of this study is to show that Google data can be used to generate general trends of infectious diseases on the basis of borreliosis and tick bites. In addition, the possibility of using Google AdWord data to estimate incidences of infectious diseases, where there is inconsistency in the obligation to notify authorities, is investigated with the perspective to facilitate public health studies. METHODS: Google AdWords Keyword Planner was used to identify search terms related to ticks and borreliosis in Germany from January 2015 to December 2018. The search volume data from the identified search terms was assessed using Excel version 15.23. In addition, SPSS version 24.0 was used to calculate the correlation between search volumes, registered cases, and temperature. RESULTS: A total of 1999 tick-related and 542 borreliosis-related search terms were identified, with a total of 209,679,640 Google searches in all 16 German federal states in the period under review. The analysis showed a high correlation between temperature and borreliosis (r=0.88), and temperature and tick bite (r=0.83), and a very high correlation between borreliosis and tick bite (r=0.94). Furthermore, a high to very high correlation between Google searches and registered cases in each federal state was observed (Brandenburg r=0.80, Mecklenburg-West Pomerania r= 0.77, Saxony r= 0.74, and Saxony-Anhalt r=0.90; all P<.001). CONCLUSIONS: Our study provides insight into annual trends concerning interest in ticks and borreliosis that are relevant to the German population exemplary in the data of a large internet search engine. Public health studies collecting incidence data may benefit from the results indicating a significant correlation between internet search data and incidences of infectious diseases.

Expressions of Individualization on the Internet and Social Media: Multigenerational Focus Group Study.

BACKGROUND: Growing individualization within the past decades has been described as a fundamental shift in society. Studies have reported how the digital age promotes new forms of individualism with self-tracking technologies and self-presentation in social networks. Potential harmful effects on the mental health of young adults have already been at the forefront of research. However, 2 questions that remain unanswered are how emotional experiences and expressions of self-relatedness differ among generations in their usage of the internet and social media, and if an increasing individualism can be observed by this. OBJECTIVE: The aim of this study is to examine whether the use of the internet and social media has led people to be more concerned about themselves than former generations. The potential consequences of mental and emotional distress among different age groups are analyzed. METHODS: A focus-group approach was chosen to study the following age groups: Baby Boomers (those born in 1950-1965), Generation X (those born in 1966-1980), and Digital Natives (those born in 1981-2000). We organized 6 focus groups with 36 participants who discussed their private usage of the internet and social media, different devices, platforms and functions, communication behavior, and self-tracking. We applied inductive category formation and followed the Standards for Reporting Qualitative Research (SRQR) checklist. RESULTS: We found differences in the 3 studied generations regarding the reasons for their use of the internet and social media, the effects of this use, personal feelings and experiences, expressions of self-relatedness, and social relationships. The Baby Boomers voiced a wish to stay autonomous while being in contact with their personal network. Generation X included enthusiastic members who appreciate self-tracking for curiosity and fascination, as well as people who felt fears about data surveillance. The Digital Natives reported a wish to optimize their own body by self-tracking while being faced with norms and expectations that were communicated via the internet and social media. CONCLUSIONS: All generations expressed self-relatedness, yet by different means. The Baby Boomers expressed less individualism than Generation X and the Digital Natives, who felt the highest strain due to social comparisons. However, all generations reported specific, potentially problematic consequences for their mental health. Age-specific coping strategies are necessary to promote a mentally healthy way of using the internet and social media.

[Blessing or curse? The World Wide Web as information source for autism and Asperger Syndrome]. / Segen oder Fluch? Das Internet als Informationsquelle über Autismus und Asperger-Syndrom.

Blessing or curse? The World Wide Web as information source for autism and Asperger Syndrome Abstract. Objective: The World Wide Web is today one of the most common methods used for obtaining health-related information, though the quality of the information is sometimes questionable. The present study addresses the quality of the information source internet and the resulting implications and discusses examples related to autism spectrum disorder. Method: We systematically evaluated 96 German websites, with the aim of estimating specific characteristic features, reliability of publications, presentation of information as well as overall website quality. We also analyzed the clinical implications of the presentations. Results: Only 39 % of the websites provided references to scientifically well-founded information, whereas advertisements were found on 53 % of websites. The greatest percentage of false information (17 %) was disseminated concerning therapy. 75 % of the websites provided incomplete information. Only 10 % of websites discussed the impairment or familial burden. The quality of information was insufficient on 30 %, poor on 41 %, and good on only 6 % of the websites. Conclusions: Similar to results available for English-language websites, the quality of German websites providing health-related information can be considered low. Implications concerning confirmation bias, stigma, overidentification, in-group/outgroup, contrast and snowball effects are discussed.

Doing Internet research with hard-to-reach communities: methodological reflections on gaining meaningful access.

This article contributes to scholarship on digital sociology by addressing the methodological challenge of gaining access to hard-to-reach online communities. We use assemblage theory to argue how collaborative efforts of human participants, digital technologies, techniques, authorities, cultural codes and the human researcher co-determine aspects of gaining access to online subjects. In particular, we analyse how credibility and reflexivity are assembled in an online research context. This is exemplified by our own experiences of researching hackers that dispute surveillance and the social embeddedness of darknet drug market users. In this article, we demonstrate the utility of an assemblage perspective for understanding the complexities involved in negotiating access to hard-to-reach communities in digital spaces.

Online accounts of gene expression profiling in early-stage breast cancer: Interpreting genomic testing for chemotherapy decision making.

BACKGROUND: Genomic techniques are being developed within oncology and beginning to be experienced within routine cancer care. Little is known about how these tools feature in patients' experiences of treatment decision making. OBJECTIVE: This research explores the ways in which women interpret and discuss gene expression profiling for breast cancer treatment decision making, as articulated within online accounts. DESIGN: This study used a qualitative approach to analyse written exchanges focusing on gene expression profiling in the UK (Oncotype DX test). Accounts are taken from online forums hosted by two UK cancer charity websites, comprising 132 discussion threads from a total of seven forums. Authors qualitatively analysed the data and developed key themes drawing on existing literature from medical sociology. FINDINGS: Women used online spaces to share and discuss results of gene expression profiling. Women interpreted results in the context of indirect experience of cancer treatment, and sociocultural depictions of cancer and chemotherapy. Users largely represented the test positively, emphasizing its ability to "personalize" treatment pathways, though many also pointed to inherent uncertainties with regards the possibility of cancer recurrence. DISCUSSION AND CONCLUSIONS: We highlight the complex contexts in which genomic techniques are experienced, with these shaped by personal biographies, online environments and pervasive cultural narratives of cancer and its treatment. We highlight tensions between the claims of genomic testing to aid treatment decision making and patient reflections on the capability of these techniques to resolve uncertainties surrounding treatment decisions.

Should Internet Researchers Use Ill-Gotten Information?

This paper describes how the ethical problems raised by scientific data obtained through harmful and immoral conduct (which, following Stan Godlovitch, is called ill-gotten information) may also emerge in cases where data is collected from the Internet. It describes the major arguments for and against using ill-gotten information in research, and shows how they may be applied to research that either collects information about the Internet itself or which uses data from questionable or unknown sources on the Internet. Three examples (the Internet Census 2012, the PharmaLeaks study, and research into keylogger dropzones) demonstrate how researchers address the ethical issues raised by the sources of data that they use and how the existing arguments concerning the use of ill-gotten information apply to Internet research. The problems faced by researchers who collect or use data from the Internet are shown to be the same problems faced by researchers in other fields who may obtain or use ill-gotten information.

Gone in sixty (milli)seconds: Disentangling the effects of location context on attention bias.

Attention bias is associated with a broad range of emotional disorders. Because of its transportability, attention bias modification (ABM) training can be administered outside of the laboratory; however, some evidence suggests that ABM training may be less effective when conducted in the individual's natural environment. The aim of this study was to examine factors that might account for the attenuated effects of attentional bias (AB) when assessed remotely. One hundred fifty-eight undergraduate psychology students completed the Emotional Stroop Task on two occasions - once in the laboratory and once remotely. To help disentangle the influences of emotional state and location on attention bias, participants were randomized to view either an emotionally provocative clip or an emotionally neutral clip prior to completing the emotional Stroop task. Results showed evidence of an attentional bias only in the laboratory, among participants in the neutral emotion condition (b = -19.67, P = .008, 95% CI [-34.18, -5.15]). Exploratory analyses revealed that emotion provocation was associated with attentional bias among individuals with greater symptoms of depression, but only remotely (b = -15.70, P = 0.046, 95% CI [-31.15, -0.25]). These findings suggest that caution should be used when conducting attention bias research remotely. Limitations and future directions are discussed.

Using Mechanical Turk for research on cancer survivors.

OBJECTIVE: The successful recruitment and study of cancer survivors within psycho-oncology research can be challenging, time-consuming, and expensive, particularly for key subgroups such as young adult cancer survivors. Online crowdsourcing platforms offer a potential solution that has not yet been investigated with regard to cancer populations. The current study assessed the presence of cancer survivors on Amazon's Mechanical Turk (MTurk) and the feasibility of using MTurk as an efficient, cost-effective, and reliable psycho-oncology recruitment and research platform. METHODS: During a <4-month period, cancer survivors living in the United States were recruited on MTurk to complete two assessments, spaced 1 week apart, relating to psychosocial and cancer-related functioning. The reliability and validity of responses were investigated. RESULTS: Within a <4-month period, 464 self-identified cancer survivors on MTurk consented to and completed an online assessment. The vast majority (79.09%) provided reliable and valid study data according to multiple indices. The sample was highly diverse in terms of U.S. geography, socioeconomic status, and cancer type, and reflected a particularly strong presence of distressed and young adult cancer survivors (median age = 36 years). A majority of participants (58.19%) responded to a second survey sent one week later. CONCLUSIONS: Online crowdsourcing represents a feasible, efficient, and cost-effective recruitment and research platform for cancer survivors, particularly for young adult cancer survivors and those with significant distress. We discuss remaining challenges and future recommendations. Copyright © 2016 John Wiley & Sons, Ltd.

Investigating measurement equivalence of visual analogue scales and Likert-type scales in Internet-based personality questionnaires.

Visual analogue scales (VASs) have shown superior measurement qualities in comparison to traditional Likert-type response scales in previous studies. The present study expands the comparison of response scales to properties of Internet-based personality scales in a within-subjects design. A sample of 879 participants filled out an online questionnaire measuring Conscientiousness, Excitement Seeking, and Narcissism. The questionnaire contained all instruments in both answer scale versions in a counterbalanced design. Results show comparable reliabilities, means, and SDs for the VAS versions of the original scales, in comparison to Likert-type scales. To assess the validity of the measurements, age and gender were used as criteria, because all three constructs have shown non-zero correlations with age and gender in previous research. Both response scales showed a high overlap and the proposed relationships with age and gender. The associations were largely identical, with the exception of an increase in explained variance when predicting age from the VAS version of Excitement Seeking (B10 = 1318.95, ΔR(2) = .025). VASs showed similar properties to Likert-type response scales in most cases.

Internet research in psychology.

Today the Internet plays a role in the lives of nearly 40% of the world's population, and it is becoming increasingly entwined in daily life. This growing presence is transforming psychological science in terms of the topics studied and the methods used. We provide an overview of the literature, considering three broad domains of research: translational (implementing traditional methods online; e.g., surveys), phenomenological (topics spawned or mediated by the Internet; e.g., cyberbullying), and novel (new ways to study existing topics; e.g., rumors). We discuss issues (e.g., sampling, ethics) that arise when doing research online and point to emerging opportunities (e.g., smartphone sensing). Psychological research on the Internet comes with new challenges, but the opportunities far outweigh the costs. By integrating the Internet, psychological research has the ability to reach large, diverse samples and collect data on actual behaviors, which will ultimately increase the impact of psychological research on society.

Conducting Clinical Research Using Crowdsourced Convenience Samples.

Crowdsourcing has had a dramatic impact on the speed and scale at which scientific research can be conducted. Clinical scientists have particularly benefited from readily available research study participants and streamlined recruiting and payment systems afforded by Amazon Mechanical Turk (MTurk), a popular labor market for crowdsourcing workers. MTurk has been used in this capacity for more than five years. The popularity and novelty of the platform have spurred numerous methodological investigations, making it the most studied nonprobability sample available to researchers. This article summarizes what is known about MTurk sample composition and data quality with an emphasis on findings relevant to clinical psychological research. It then addresses methodological issues with using MTurk--many of which are common to other nonprobability samples but unfamiliar to clinical science researchers--and suggests concrete steps to avoid these issues or minimize their impact.

Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial.

AIMS: To gain an in-depth understanding of the perceptions of young adults with sickle cell disease and sickle cell trait about parenthood and participating in the CHOICES randomized controlled trial that used computer-based, educational programmes. BACKGROUND: In the USA, there is insufficient education to assure that all young adults with sickle cell disease or sickle cell trait understand genetic inheritance risks and reproductive options to make informed reproductive decisions. To address this educational need, we developed a computer-based, multimedia program (CHOICES) and reformatted usual care into a computer-based (e-Book) program. We then conducted a two-year randomized controlled trial that included a qualitative component that would deepen understanding of young adults' perceptions of parenthood and use of computer-based, educational programmes. DESIGN: A qualitative descriptive approach completed after a randomized controlled trial. METHODS: Sixty-eight men and women of childbearing age participated in semi-structured interviews at the completion of the randomized controlled trial from 2012-2013. Thematic content analysis guided the qualitative description. RESULTS/FINDINGS: Three main themes were identified: (1) increasing knowledge and new ways of thinking and behaving; (2) rethinking parenting plans; and (3) appraising the program design and delivery. Most participants reported increased knowledge and rethinking of their parenting plans and were supportive of computer-based learning. Some participants expressed difficulty in determining individual transmission risks. CONCLUSION: Participants perceived the computer programs as beneficial to their learning. Future development of an Internet-based educational programme is warranted, with emphasis on providing tailored education or memory boosters about individual transmission risks.

iTunes song-gifting is a low-cost, efficient recruitment tool to engage high-risk MSM in internet research.

This brief report describes methodology and results of a novel, efficient, and low-cost recruitment tool to engage high-risk MSM in online research. We developed an incentivization protocol using iTunes song-gifting to encourage participation of high-risk MSM in an Internet-based survey of HIV status, childhood sexual abuse, and adult behavior and functioning. Our recruitment methodology yielded 489 participants in 4.5 months at a total incentive cost of $1.43USD per participant. The sample comprised a critically high-risk group of MSM, including 71.0 % who reported recent condomless anal intercourse. We offer a "how-to" guide to aid future investigators in using iTunes song-gifting incentives.

Using Google AdWords for international multilingual recruitment to health research websites.

BACKGROUND: Google AdWords, the placement of sponsored links in Google search results, is a potent method of recruitment to Internet-based health studies and interventions. However, the performance of Google AdWords varies considerably depending on the language and the location of the target audience. OBJECTIVE: Our goal was to describe differences in AdWords performance when recruiting participants to the same study conducted in four languages and to determine whether AdWords campaigns can be optimized in order to increase recruitment while decreasing costs. METHODS: Google AdWords were used to recruit participants to the Mood Screener, a multilingual online depression screening tool available in English, Russian, Spanish, and Chinese. Two distinct recruitment periods are described: (1) "Unmanaged", a 6-month period in which ads were allowed to run using only the AdWords tool itself, with no human intervention, and (2) "Managed", a separate 7-week period during which we systematically sought to optimize our recruitment campaigns. RESULTS: During 6 months of unmanaged recruitment, our ads were shown over 1.3 million times, resulting in over 60,000 site visits. The average click-through rate (ratio of ads clicked to ads displayed) varied from 1.86% for Chinese ads to 8.48% for Russian ads, as did the average cost-per-click (from US $0.20 for Chinese ads to US $0.50 for English ads). Although Chinese speakers' click-through rate was lowest, their rate of consenting to participate was the highest, at 3.62%, with English speakers exhibiting the lowest consent rate (0.97%). The conversion cost (cost to recruit a consenting participant) varied from US $10.80 for Russian speakers to US $51.88 for English speakers. During the 7 weeks of "managed" recruitment, we attempted to improve AdWords' performance in regards to the consent rate and cost by systematically deleting underperforming ads and adjusting keywords. We were able to increase the number of people who consent after coming to the site by 91.8% while also decreasing per-consent cost by 23.3%. CONCLUSIONS: Our results illustrate the need to linguistically and culturally adapt Google AdWords campaigns and to manage them carefully to ensure the most cost-effective results.

Using online social media for recruitment of human immunodeficiency virus-positive participants: a cross-sectional survey.

BACKGROUND: There are many challenges in recruiting and engaging participants when conducting research, especially with HIV-positive individuals. Some of these challenges include geographical barriers, insufficient time and financial resources, and perceived HIV-related stigma. OBJECTIVE: This paper describes the methodology of a recruitment approach that capitalized on existing online social media venues and other Internet resources in an attempt to overcome some of these barriers to research recruitment and retention. METHODS: From May through August 2013, a campaign approach using a combination of online social media, non-financial incentives, and Web-based survey software was implemented to advertise, recruit, and retain participants, and collect data for a survey study with a limited budget. RESULTS: Approximately US $5,000 was spent with a research staff designated at 20% of full-time effort, yielding 2034 survey clicks, 1404 of which met the inclusion criteria and initiated the survey, for an average cost of US $3.56 per survey initiation. A total of 1221 individuals completed the survey, yielding 86.97% retention. CONCLUSIONS: These data indicate that online recruitment is a feasible and efficient tool that can be further enhanced by sophisticated online data collection software and the addition of non-financial incentives.