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      Leveraging Interdisciplinary Teams to Develop and Implement Secure Websites for Behavioral Research: Applied Tutorial

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          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.

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          Most cited references29

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          What design features are used in effective e-health interventions? A review using techniques from Critical Interpretive Synthesis.

          The effectiveness of e-health interventions varies greatly. Despite this, there has been relatively little formal consideration of how differences in the design of an intervention (i.e., how the content is delivered) may explain why some interventions are more effective than others. This review primarily examines the use of the Internet to provide educational and self-management interventions to promote health. The article develops hypotheses about how the design of these interventions may be associated with outcomes. In total, 52 published reports from both a diversity sample and a representative sample were reviewed using techniques from Critical Interpretive Synthesis. Four core interactive design features were identified that may mediate the effects of intervention design on outcomes: Social context and support, contacts with intervention, tailoring, and self-management. A conceptual framework to summarize the design of e-health interventions delivered using the Internet is proposed. The framework provides a guide for systematic research to identify the effects of specific design features on intervention outcomes and to identify the mechanisms underlying any effects. To optimize the design of e-health interventions more work is needed to understand how and why these design features may affect intervention outcomes and to investigate the optimal implementation and dosage of each design feature.
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            The diffusion of virtual communities in health care: concepts and challenges.

            This paper providers an overview and discussion of virtual communities in health care. Furthermore, we aim to discuss in this context ethical, legal and technical considerations and the current status of research in this domain. We searched medical and social science literature including survey studies, randomized and non-randomized controlled interventions and reviews. The literature indicates that a virtual community in health care as a group of people using telecommunication with the purposes of delivering health care and education, and/or providing support, covers a wide range of clinical specialties, technologies and stakeholders. Examples include peer-to-peer networks, virtual health care delivery and research teams. Ethical challenges including the concepts of identity and deception, privacy and confidentiality and technical issues, such as sociability and usability are discussed. Virtual communities may empower patients and enhance coordination of care services; however, there is not sufficient systematic evidence of the effectiveness of virtual communities on clinical outcomes or patient empowerment. Researchers need to address issues, such as sample sizes and experimental design to further the research field in this domain. When practitioners utilize virtual community tools to communicate with patients or colleagues they have to maximize sociability and usability of this mode of communication, while addressing concerns for privacy and the fear of de-humanizing practice, and the lack of clarity or relevance of current legislative frameworks.
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              Ethical Issues in Social Media Research for Public Health

              Social media (SM) offer huge potential for public health research, serving as a vehicle for surveillance, delivery of health interventions, recruitment to trials, collection of data, and dissemination. However, the networked nature of the data means they are riddled with ethical challenges, and no clear consensus has emerged as to the ethical handling of such data. This article outlines the key ethical concerns for public health researchers using SM and discusses how these concerns might best be addressed. Key issues discussed include privacy; anonymity and confidentiality; authenticity; the rapidly changing SM environment; informed consent; recruitment, voluntary participation, and sampling; minimizing harm; and data security and management. Despite the obvious need, producing a set of prescriptive guidelines for researchers using SM is difficult because the field is evolving quickly. What is clear, however, is that the ethical issues connected to SM-related public health research are also growing. Most importantly, public health researchers must work within the ethical principles set out by the Declaration of Helsinki that protect individual users first and foremost.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J Med Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                September 2020
                23 September 2020
                : 22
                : 9
                : e19217
                Affiliations
                [1 ] School of Nursing University of Minnesota Minneapolis, MN United States
                [2 ] School of Kinesiology University of Minnesota Minneapolis, MN United States
                [3 ] School of Public Health University of Minnesota Minneapolis, MN United States
                [4 ] Office of Information Technology University of Minnesota Minneapolis, MN United States
                Author notes
                Corresponding Author: Christie L Martin mart1026@ 123456umn.edu
                Author information
                https://orcid.org/0000-0003-1685-0205
                https://orcid.org/0000-0003-4107-6119
                https://orcid.org/0000-0002-9033-2097
                https://orcid.org/0000-0003-3529-8401
                https://orcid.org/0000-0001-8837-5488
                https://orcid.org/0000-0002-2110-498X
                Article
                v22i9e19217
                10.2196/19217
                7542408
                32965234
                fb218b53-db62-427b-ac3e-2e4cd94ed952
                ©Christie L Martin, Eydie N Kramer-Kostecka, Jennifer A Linde, Sarah Friend, Vanessa R Zuroski, Jayne A Fulkerson. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 23.09.2020.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 8 April 2020
                : 12 June 2020
                : 29 July 2020
                : 13 August 2020
                Categories
                Tutorial
                Tutorial

                Medicine
                research ethics and compliance,website development,behavioral research,digital interventions,website authentication,website security

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