Leveraging Interdisciplinary Teams to Develop and Implement Secure Websites for Behavioral Research: Applied Tutorial.
ABSTRACT: Behavioral researchers are increasingly using interactive digital platforms, either as standalone or supplementary intervention tools, to facilitate positive changes in research participants' health habits. Research-oriented interactive websites optimally offer a variety of participatory mediums, such as blogs, user-driven content, or health activities. Owing to the multidirectional features of interactive websites, and a corresponding need to protect research participants' identity and data, it is paramount that researchers design ethical platforms that ensure privacy and minimize loss of anonymity and confidentiality. Authentication (ie, digital verification of one's identity) of interactive sites is one viable solution to these concerns. Although previous publications have addressed ethical requirements related to authenticated platforms, few applied guidelines in the literature facilitate adherence to ethical principles and legally compliant study protocols during all phases of research website creation (feasibility, design, implementation, and maintenance). Notably, to remain compliant with ethical standards and study protocols, behavioral researchers must collaborate with interdisciplinary teams to ensure that the authenticated site remains secure and usable in all stages of the project. In this tutorial, we present a case study conducted at a large research university. Through iterative and practical recommendations, we detail lessons learned from collaborations with the Institutional Review Board, legal experts, and information technology teams. Although the intricacies of our applied tutorial may require adaptations based on each institution's technological capacity, we are confident that the core takeaways are universal and thus useful to behavioral researchers creating ethically responsible and compliant interactive websites.
Project description:Many organizations collect and make available perinatal data for research and quality improvement initiatives. Analysis of existing data and use of retrospective study design has many advantages for perinatal researchers. These advantages include large samples, inclusion of women from diverse groups, data reflective of actual clinical processes and outcomes, and decreased risk of direct maternal and fetal harm. We review 11 publicly available datasets relevant to perinatal research and quality improvement, detail the availability of interactive websites, and discuss strategies to locate additional datasets. While analysis of existing data has limitations, it may provide statistical power to study rare perinatal outcomes, support research applicable to diverse populations, and facilitate timely and ethical well-woman research immediately relevant to clinical care.
Project description:Both mobile apps and responsive-design websites (web apps) can be used to deliver mobile health (mHealth) interventions, but it can be difficult to discern which to use in research. The goal of this paper is to present four case studies from behavioral interventions that developed either a mobile app or a web app for research and present an information table to help researchers determine which mobile option would work best for them. Four behavioral intervention case studies (two developed a mobile app, and two developed a web app) presented include time, cost, and expertise. Considerations for adopting a mobile app or a web app-such as time, cost, access to programmers, data collection, security needs, and intervention components- are presented. Future studies will likely integrate both mobile app and web app modalities. The considerations presented here can help guide researchers on which platforms to choose prior to starting an mHealth intervention.
Project description:Researchers might be wondering whether the use of social media by students raises any ethical issues? It is my opinion that with the astronomical increase in the use of social networking websites or platforms by students, ethical issues are progressively important. The astronomical increase in the use of social networking platforms by minors raises ethical questions in school ecologies. This study investigated the ethical issues in social media usage among secondary school students in a developing context. A semi-structured questionnaire that elicited information on the school children's home background, social media operated, and mode of connection to the social media was used to collect data. The questionnaire gave the students the opportunity to write their responses to the interview questions freely. Mixed methods such as constant comparative techniques and descriptive statistical methods were used to analyze data from the one hundred and thirty school children that participated in this research. The results indicated that Facebook is the most operated social networking website by the selected schoolchildren. Most of the schoolchildren operating the popular social networking accounts signed up before the age of thirteen with the help of their biological sisters and brothers. Themes such as cyber pornography, sexting, cyber stalking, cyber bullying, cyber hacking, and abusive language emanated from the individual qualitative interviews. The concluding part of this article answers questions on the impact of new communication technologies on psycho-social adjustment of school children in developing countries.
Project description:BACKGROUND:In the last decade, social media has emerged as a newer platform for knowledge dissemination, information exchange, and interpersonal communication for health care professionals (HCPs). However, the underlying behaviors of HCPs and the ethical use of social media for productivity enhancement and a sustainable health care system remain ambiguous. OBJECTIVE:This study seeks to understand the factors that relate to the frequency use of social media in the health care discipline. It also aims to explore the underlying online behaviors of HCPs, which include the exchange of medical information with peers, interpersonal communication, and productivity enhancement in their daily practice. METHODS:This study adopted the quantitative method in collecting and analyzing data. A survey instrument based on the behavioral and technology acceptance theories was developed for this purpose. The survey was distributed via social media platforms to 973 participants that included physicians, pharmacists, and allied HCPs working in the United Arab Emirates. The responses from 203 completed questionnaires (response rate 20.3%) were analyzed. RESULTS:Of 203 respondents, 133 HCPs used WhatsApp (65.5%); therefore, WhatsApp had the highest number of users compared to Facebook and YouTube, with 101 users out of 203 (49.7%). Overall, 109 of 203 (53.6%) HCPs used social media platforms for the exchange of peer medical information and 108 of 203 (53.2%) used social media several times during the day to improve their interpersonal communication with colleagues. However, only 71 of 203 (34.9%) utilized social media to enhance their productivity in general. The structural model equation showed that behavioral intention (beta=.47; P<.001), habit (beta=.26; P=.001), attitude (beta=.20; P=.002), and perceived usefulness (beta=.12; P=.09) were positively and significantly related to frequency of use. The model explained a rate of 45% variance in the frequency of use and a rate of 17% variance in the social media intention of use. CONCLUSIONS:The research highlights the significant factors that relate to the adoption of social media platforms in health care practice. Based on the findings of this study, the use of online platforms facilitates the exchange of medical information among peers and enhances the share of experiences that support HCP's learning and development. Moreover, social media platforms foster a higher level of communication among practitioners and might improve daily productivity. Future researchers might explore other variables such as training and external factors. For instance, they may draw on areas related to guidelines and policies. From this standpoint, the health care discipline can benefit from highly interactive platforms and adopt them for development, collaboration, and better health outcomes.
Project description:BACKGROUND:Advances in medicine rely to a great extent on people's willingness to share their data with researchers. With increasingly widespread use of digital technologies, several Web-based communities have emerged aiming to enable their users to share large amounts of data, some of which can possibly be employed for research purposes by scientists, or to conduct participant-led research (PLR). Scholarship has recently addressed the necessity of interrogating how existing ethical standards can and should be applied and adapted in view of the specificities of such Web-based activities. So far, no study has explored participants' beliefs about and attitudes toward ethical oversight when it comes to platforms that involve medical data sharing. OBJECTIVE:This paper presents the protocol for a survey study aimed at understanding users' beliefs about Web-based data-sharing platforms regarding how research ethics principles should be applied in such a setting. Furthermore, the study aims at quantitatively assessing the relationship between participants' perspectives on ethical oversight and other variables such as previous participation in research, beliefs about data sharing, and attitudes toward self-experimentation. METHODS:We are conducting a Web-based survey with users of a popular Web-based data-sharing platform, Open Humans. The survey has been sent to approximately 4640 users registered for the Open Humans newsletter. To fill out the survey, participants need to have an account on Open Humans. We expect a 5%-10% response rate (between 200 and 400 completed surveys out of approximately 4000 survey invitations sent). Independent variables include past data-sharing behavior and intention, beliefs about data sharing, past participation in research, attitudes toward self-experimentation, perceived knowledge of the platform's guidelines and terms, perceived importance of having transparent guidelines, and governance-related beliefs. The main dependent variable is participants' expectations regarding who should ensure that ethical requirements are met within research projects conducted on open data-sharing platforms, based on Emanuel et al's ethical framework. We will use chi-square tests to assess the relationship between participants' expectations regarding ethical oversight and their past behavior, future intentions, beliefs, attitudes, and knowledge. RESULTS:Data collection started on June 13, 2018. A reminder to fill out the survey was sent to participants in mid-July. We expect to gain insights on users' perspectives on the ethical oversight of Web-based data-sharing platforms and on the associated experiences, beliefs, and sociodemographic characteristics. CONCLUSIONS:When digital tools allow people to engage in PLR including medical data, understanding how people interpret and envision the ethical oversight of their data-sharing practices is crucial. This will be the first study to explore users' perspectives on ethical oversight of Web-based data-sharing platforms. The results will help inform the development of a framework that can be employed for platforms hosting various kinds of research projects to accommodate participants' ethical oversight needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/10939.
Project description:Research ethics is predominantly taught and practiced in Anglophone countries, particularly those in North America and Western Europe. Initiatives to build research ethics capacity in developing countries must attempt to avoid imposing foreign frameworks and engage with ethical issues in research that are locally relevant. This article describes the process and outcomes of a capacity-building workshop that took place in Kinshasa, Democratic Republic of Congo in the summer of 2011. Although the workshop focused on a specific ethical theme - the responsibilities of researchers to provide health-related care to their research participants - we argue that the structure of the workshop offers a useful method for engaging with research ethics in general, and the theme of ancillary care encourages a broad perspective on research ethics that is highly pertinent in low-income countries. The workshop follows an interactive, locally driven model that could be fruitfully replicated in similar settings.
Project description:INTRODUCTION:Though the importance of knowledge mobilisation has been established globally in health and wellness research, a certain degree of ambiguity remains regarding the meaning and extent of knowledge mobilisation activities and how they have been implemented. In this study, we aim to explore the different descriptions of knowledge mobilisation and the diverse ways mobilisation activities have been realised by different researchers working for the betterment of health and wellness of immigrant communities in their host countries. METHODS AND ANALYSIS:We aimed to conduct an integrative review to organise the available literature describing knowledge mobilisation pertaining to health and wellness in immigrant communities. We will employ a comprehensive search, using appropriate search-terms, to identify relevant literature and will qualitatively synthesise the information toward fulfilling our objectives. Specific methodological and analytical frameworks related to the integrative review process will guide each step of the process. A librarian designed the systematic search of the academic and grey literature from database inception to December 2019. The databases include MEDLINE (Ovid), Embase, PsycINFO, PubMed, CINAHL and SocINDEX. For grey literature, we will conduct searches in AHS Insite, Google, Google Scholar, OAISter and government websites. A two-stage (title-abstract and full-text) screening will be conducted, including single-citation tracking and hand search of reference lists. ETHICS AND DISSEMINATION:Ethical approval is not required for this review. We first plan to disseminate the results of our systematic review protocol through meetings with key stakeholders, followed by appropriate publications and presentations at applicable platforms. We also have opted for an integrated knowledge translation or community-engaged knowledge mobilisation approach where we have engaged with community-based citizen researchers from the inception of our research.
Project description:BACKGROUND:Substance use-related communication for drug use promotion and its prevention is widely prevalent on social media. Social media big data involve naturally occurring communication phenomena that are observable through social media platforms, which can be used in computational or scalable solutions to generate data-driven inferences. Despite the promising potential to utilize social media big data to monitor and treat substance use problems, the characteristics, mechanisms, and outcomes of substance use-related communications on social media are largely unknown. Understanding these aspects can help researchers effectively leverage social media big data and platforms for observation and health communication outreach for people with substance use problems. OBJECTIVE:The objective of this critical review was to determine how social media big data can be used to understand communication and behavioral patterns of problematic use of prescription drugs. We elaborate on theoretical applications, ethical challenges and methodological considerations when using social media big data for research on drug abuse and addiction. Based on a critical review process, we propose a typology with key initiatives to address the knowledge gap in the use of social media for research on prescription drug abuse and addiction. METHODS:First, we provided a narrative summary of the literature on drug use-related communication on social media. We also examined ethical considerations in the research processes of (1) social media big data mining, (2) subgroup or follow-up investigation, and (3) dissemination of social media data-driven findings. To develop a critical review-based typology, we searched the PubMed database and the entire e-collection theme of "infodemiology and infoveillance" in the Journal of Medical Internet Research / JMIR Publications. Studies that met our inclusion criteria (eg, use of social media data concerning non-medical use of prescription drugs, data informatics-driven findings) were reviewed for knowledge synthesis. User characteristics, communication characteristics, mechanisms and predictors of such communications, and the psychological and behavioral outcomes of social media use for problematic drug use-related communications are the dimensions of our typology. In addition to ethical practices and considerations, we also reviewed the methodological and computational approaches used in each study to develop our typology. RESULTS:We developed a typology to better understand non-medical, problematic use of prescription drugs through the lens of social media big data. Highly relevant studies that met our inclusion criteria were reviewed for knowledge synthesis. The characteristics of users who shared problematic substance use-related communications on social media were reported by general group terms, such as adolescents, Twitter users, and Instagram users. All reviewed studies examined the communication characteristics, such as linguistic properties, and social networks of problematic drug use-related communications on social media. The mechanisms and predictors of such social media communications were not directly examined or empirically identified in the reviewed studies. The psychological or behavioral consequence (eg, increased behavioral intention for mimicking risky health behaviors) of engaging with and being exposed to social media communications regarding problematic drug use was another area of research that has been understudied. CONCLUSIONS:We offer theoretical applications, ethical considerations, and empirical evidence within the scope of social media communication and prescription drug abuse and addiction. Our critical review suggests that social media big data can be a tremendous resource to understand, monitor and intervene on drug abuse and addiction problems.
Project description:Getting a grip on how we may age healthily is a central interest of biogerontological research. To this end, a number of academic teams developed platforms for life- and healthspan assessment in Caenorhabditis elegans. These are very appealing for medium- to high throughput screens, but a broader implementation is lacking due to many systems relying on custom scripts for data analysis that others struggle to adopt. Hence, user-friendly recommendations would help to translate raw data into interpretable results. The aim of this communication is to streamline the analysis of data obtained by the WorMotel, an economically and practically appealing screening platform, in order to facilitate the use of this system by interested researchers. We here detail recommendations for the stepwise conversion of raw image data into activity values and explain criteria for assessment of health in C. elegans based on locomotion. Our analysis protocol can easily be adopted by researchers, and all needed scripts and a tutorial are available in S1 and S2 Files.
Project description:Getting a grip on how we may age healthily is a central interest of biogerontological research. To this end, a number of academic teams developed platforms for life- and healthspan assessment in Caenorhabditis elegans. These are very appealing for medium- to high throughput screens, but a broader implementation is lacking due to many systems relying on custom scripts for data analysis that others struggle to adopt. Hence, user-friendly recommendations would help to translate raw data into interpretable results. The aim of this communication is to streamline the analysis of data obtained by the WorMotel, an economically and practically appealing screening platform, in order to facilitate the use of this system by interested researchers. We here detail recommendations for the stepwise conversion of raw image data into activity values and explain criteria for assessment of health in C. elegans based on locomotion. Our analysis protocol can easily be adopted by researchers, and all needed scripts and a tutorial are available in supporting information.