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      Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community

      editorial
      , PhD 1 , , , PhD 1
      (Reviewer), (Reviewer), (Reviewer), (Reviewer)
      Journal of Medical Internet Research
      JMIR Publications
      ethical issues, social media, data sharing, privacy, informed consent, data protection, data anonymization

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          Abstract

          With the expansion and popularity of research on websites such as Facebook and Twitter, there has been increasing concern about investigator conduct and social media ethics. The availability of large data sets has attracted researchers who are not traditionally associated with health data and its associated ethical considerations, such as computer and data scientists. Reliance on oversight by ethics review boards is inadequate and, due to the public availability of social media data, there is often confusion between public and private spaces. In addition, social media participants and researchers may pay little attention to traditional terms of use. In this paper, we review four cases involving ethical and terms-of-use violations by researchers seeking to conduct social media studies in an online patient research network. These violations involved unauthorized scraping of social media data, entry of false information, misrepresentation of researcher identities of participants on forums, lack of ethical approval and informed consent, use of member quotations, and presentation of findings at conferences and in journals without verifying accurate potential biases and limitations of the data. The correction of these ethical lapses often involves much effort in detecting and responding to violators, addressing these lapses with members of an online community, and correcting inaccuracies in the literature (including retraction of publications and conference presentations). Despite these corrective actions, we do not regard these episodes solely as violations. Instead, they represent broader ethical issues that may arise from potential sources of confusion, misinformation, inadequacies in applying traditional informed consent procedures to social media research, and differences in ethics training and scientific methodology across research disciplines. Social media research stakeholders need to assure participants that their studies will not compromise anonymity or lead to harmful outcomes while preserving the societal value of their health-related studies. Based on our experience and published recommendations by social media researchers, we offer potential directions for future prevention-oriented measures that can be applied by data producers, computer/data scientists, institutional review boards, research ethics committees, and publishers.

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          Most cited references26

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          Experimental evidence of massive-scale emotional contagion through social networks.

          Emotional states can be transferred to others via emotional contagion, leading people to experience the same emotions without their awareness. Emotional contagion is well established in laboratory experiments, with people transferring positive and negative emotions to others. Data from a large real-world social network, collected over a 20-y period suggests that longer-lasting moods (e.g., depression, happiness) can be transferred through networks [Fowler JH, Christakis NA (2008) BMJ 337:a2338], although the results are controversial. In an experiment with people who use Facebook, we test whether emotional contagion occurs outside of in-person interaction between individuals by reducing the amount of emotional content in the News Feed. When positive expressions were reduced, people produced fewer positive posts and more negative posts; when negative expressions were reduced, the opposite pattern occurred. These results indicate that emotions expressed by others on Facebook influence our own emotions, constituting experimental evidence for massive-scale contagion via social networks. This work also suggests that, in contrast to prevailing assumptions, in-person interaction and nonverbal cues are not strictly necessary for emotional contagion, and that the observation of others' positive experiences constitutes a positive experience for people.
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            Sharing Health Data for Better Outcomes on PatientsLikeMe

            Background PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Objective Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes. Methods Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson’s Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens). Results Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site “moderately” or “very helpful.” Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. Conclusions We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.
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              The Use of Social Networking Sites for Public Health Practice and Research: A Systematic Review

              Background Social networking sites (SNSs) have the potential to increase the reach and efficiency of essential public health services, such as surveillance, research, and communication. Objective The objective of this study was to conduct a systematic literature review to identify the use of SNSs for public health research and practice and to identify existing knowledge gaps. Methods We performed a systematic literature review of articles related to public health and SNSs using PubMed, EMBASE, and CINAHL to search for peer-reviewed publications describing the use of SNSs for public health research and practice. We also conducted manual searches of relevant publications. Each publication was independently reviewed by 2 researchers for inclusion and extracted relevant study data. Results A total of 73 articles met our inclusion criteria. Most articles (n=50) were published in the final 2 years covered by our search. In all, 58 articles were in the domain of public health research and 15 were in public health practice. Only 1 study was conducted in a low-income country. Most articles (63/73, 86%) described observational studies involving users or usages of SNSs; only 5 studies involved randomized controlled trials. A large proportion (43/73, 59%) of the identified studies included populations considered hard to reach, such as young individuals, adolescents, and individuals at risk of sexually transmitted diseases or alcohol and substance abuse. Few articles (2/73, 3%) described using the multidirectional communication potential of SNSs to engage study populations. Conclusions The number of publications about public health uses for SNSs has been steadily increasing in the past 5 years. With few exceptions, the literature largely consists of observational studies describing users and usages of SNSs regarding topics of public health interest. More studies that fully exploit the communication tools embedded in SNSs and study their potential to produce significant effects in the overall population’s health are needed.
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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
                February 2019
                21 February 2019
                : 21
                : 2
                : e11985
                Affiliations
                [1 ] PatientsLikeMe, Inc Cambridge, MA United States
                Author notes
                Corresponding Author: Emil Chiauzzi echiauzzi@ 123456outlook.com
                Author information
                http://orcid.org/0000-0003-4995-7308
                http://orcid.org/0000-0002-2293-9284
                Article
                v21i2e11985
                10.2196/11985
                6403524
                30789346
                484e1721-11a5-4b08-a5ee-2f86ce12c9c7
                ©Emil Chiauzzi, Paul Wicks. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 21.02.2019.

                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
                : 20 August 2018
                : 27 September 2018
                : 16 November 2018
                : 3 February 2019
                Categories
                Editorial
                Editorial

                Medicine
                ethical issues,social media,data sharing,privacy,informed consent,data protection,data anonymization

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