Purpose - The purpose of this paper is to introduce the concept of social relevance assessments, which are judgments made by individuals when they seek out information within virtual social worlds such as online support groups (OSGs).
Design/Methodology/approach - Constructivist grounded theory was employed to examine teh phenomenen of information exchange in OSGs for chronic kidney disease. In-depth interviews were conducted with 12 participants, and their posts in three OSGs were also harvested. Data were analyzed using inductive content analysis and the constant comparative method. Theoretical sampling was conducted until saturation was reached. Member checking, peer debriefing, and triangulation were used to verify results.
Findings - There are two levels of relevance assessment that occur when people seek out information in OSGs. First, participants evaluate the OSG to determine whether or not the group is an appropriate place for information exchange about kidney disease. Second, participants evaluate individual users on the OSG to see if they are appropriate peopel with whom to exchange information. This often takes the form of similarity assessment, whereby people try to determine whether or not they are similar to specific individuals on the forums. They use a variety of heuristics to assess similarity as part of this process.
Originality/value - This paper extends the author's understanding of relevance in information science in two fundamental ways. Within the context of social information exchange, relevance is socially constructed and is based on social characteristics, such as age, shared beliefs, and experience. Moreover, relevance is assessed both when participants seek out information and when they disclose information, suggesting that the conception of relevance as a process that occurs primarily during information seeking is limited.
Keywords - Internet, World Wide Web, Behaviour, Information science, Theory, Health Paper type - Research paper
People living with type 1 diabetes generate data as a byproduct of diabetes management. The development of decision support technologies can be enabled by harnessing these patient-generated data, but a major challenge is for these technologies to provide meaningful and highly personalized guidance to support individual patients’ decision-making processes. In this paper, results from a year-long qualitative study were reported. Twenty-six people with type 1 diabetes were interviewed regarding the types of self-generated data they use for decision-making, their decision-making processes using self-generated data, and the difficulties they experience when attempting to use this data for decision-making. These patients’ behaviors and difficulties point to new approaches to designing decision support technologies for personal use, including patient-centered and automated data entry, automated and individualized data analysis, and humanized output.
As part of an increasingly vibrant area of research, information behavior scholars have shown that traditionally marginalized populations (e.g., older adults, LGBTQ people, people of color, low-income people, and people with chronic diseases or disabilities), may have distinct health information needs and information behaviors. These differences may arise from unique patterns in marginalized groups’ life experiences, health risks and burdens, social networks, and available resources, as well as dynamics of social marginalization and exclusionary service design. This subfield of information studies that challenges established notions of health information seeking behaviours to further develop theories and models, as well as propose new models for information services and technologies. The unique characteristics of marginalized populations have necessitated the development of novel research approaches and methods, as well as interdisciplinary collaborations and community-based partnerships. This panel invites audience members to think critically about what it means to engage marginalized populations in research, and the methods and approaches needed to do so in a health context. It will also allow participants to broaden their understanding about the health information seeking behaviors of marginalized populations. Panelists will introduce and contextualize marginalized populations’ health information seeking behaviours and explore potential or existing connections between themes from a variety of disciplines. Following a brief introduction and presentations from five panelists (who are themselves exploring marginalized populations health information seeking behaviours), there will be an open discussion session with the audience in a World Café format.
Although people disclose illicit activities such as drug use online, we currently know little about what information people choose to disclose and share or whether there are differences in behavior depending on the illicit activity being disclosed. This exploratory mixed-methods study examines how people discuss and disclose the use of two different drugs—marijuana and opioids—on Reddit. In this study, hermeneutic content analysis is employed to describe the type of comments people make in forums dedicated to discussions about illicit drugs. With inductive analysis, seven categories of comments were identified: disclosure, instruction and advice, culture, community norms, moralizing, legality, and banter. Our subsequent quantitative analysis indicates that although the amounts of disclosure are similar in each subreddit, there are more instances of instruction and advice in discussions about opiates, and more examples of banter in comments about marijuana use. Infact, both subreddits have high rates of banter. We argue that banter fosters disclosure in both subreddits, and that banter and disclosure are linked within formation-seeking behaviors in online forums. This work has implications for future explorations of disclosure online and for public health interventions aimed at disseminating credible information about drug use to at-risk individuals.
BACKGROUND: As social media becomes increasingly popular online venues for engaging in communication about public health issues, it is important to understand how users promote knowledge and awareness about specific topics. OBJECTIVE: The aim of this study is to examine the frequency of discussion and differences by race and ethnicity of cancer-related topics among unique users via Twitter. METHODS: Tweets were collected from April 1, 2014 through January 21, 2015 using the Twitter public streaming Application Programming Interface (API) to collect 1% of public tweets. Twitter users were classified into racial and ethnic groups using a new text mining approach applied to English-only tweets. Each ethnic group was then analyzed for frequency in cancer-related terms within user timelines, investigated for changes over time and across groups, and measured for statistical significance. RESULTS: Observable usage patterns of the terms "cancer", "breast cancer", "prostate cancer", and "lung cancer" between Caucasian and African American groups were evident across the study period. We observed some variation in the frequency of term usage during months known to be labeled as cancer awareness months, particularly September, October, and November. Interestingly, we found that of the terms studied, "colorectal cancer" received the least Twitter attention. CONCLUSIONS: The findings of the study provide evidence that social media can serve as a very powerful and important tool in implementing and disseminating critical prevention, screening, and treatment messages to the community in real-time. The study also introduced and tested a new methodology of identifying race and ethnicity among users of the social media. Study findings highlight the potential benefits of social media as a tool in reducing racial and ethnic disparities.
This article analyzes the role that patient-provider communication has in shaping online health information seeking in patients diagnosed with chronic kidney disease [CKD]. Data were collected and analyzed over two years using grounded theory methods; the findings presented in this article are a subset of the results from this larger study. Twelve participants, all diagnosed with CKD, were each interviewed twice for a total of 24 interviews; the posts they made to three different online support groups were also harvested. Data were analyzed using the constant comparative method until theoretical saturation was reached. There are multiple factors related to patient-provider communication that influence online health information seeking, including dismissive responses from providers, the type of information need, time pressure, information overload, the healthcare system, and the desire to verify or crosscheck information by consulting multiple sources. These results highlight the importance of effective communication between people diagnosed with CKD and their healthcare providers, as these interactions impact online health information behavior. In particular, providers should foster an open attitude towards online health information seeking; they should also encourage patients to verify information found online.
Qualitative methods can be used to understand and interpret human behaviors in a variety of contexts, including people’s health information behaviors. This panel will discuss current applications of qualitative methods in this context, with emphasis on three examples: visual elicitation techniques, qualitative content analysis, and grounded theory approaches. The audience will be encouraged to discuss additional qualitative approaches and mixed methods, and how they might be applied to studies of health information behaviors.
In this study, we examine conversations in two subreddits focused on marijuana and heroin, both classified as illegal substances by United States federal government. The purpose of this study was to determine whether there are patterns of disclosure online that are specific to incriminating information. Through inductive coding of 2586 comments made to these subreddits, we identified several themes central to discussions of incriminating behavior online. One surprising finding was that over half of the comments on these subreddits were banter, which we defined as “on- or off-topic jokes and/or other off-topic comments tangential to the original discussion.” In this article, we argue that banter is highly prevalent in these particular subreddits because it acts as a proxy for similarity assessment, which has been identified as a central component of relevance judgements in other online discussion forums. These assessments allow users to identify with other posters, creating a common bond group that is strengthened by humor. Banter, jokes, and other irreverent comments -- which are often discarded or left unanalyzed in depth in other, similar studies of online discussions -- therefore help to provide a foundation for other information behaviors that occur in these subreddits, such as the disclosure of personally incriminating information.
This paper describes a longitudinal analysis of online social networks designed for patients diagnosed with chronic kidney disease. Observational analysis of 20 indicators in three domains – practices for auditing and moderating the quality of content provided by users, accessibility of privacy policies, and data sharing policies and member control over data sharing – was conducted on 10 sites in 2013 and again on 12 sites in 2015, with 7 of the same sites included in both samples. The sites were identified using Google. Indicators for each domain were scored dichotomously. These scores were compared among sites in order to analyze their general practices and policies. Total composite scores were also analyzed to determine whether individual sites had significantly different practices and policies in comparison with the group. Finally, scores for each domain were compared across years in order to assess whether practices and policies had changed over time. Differences in site practices and policies between 2013 and 2015 were not significant, although there is much room for improvement in all domains. Quality was variable across all sites, with gaps in medical disclaimers, a lack of external review of privacy policies and data safety audits, and missing information about internal quality control in the form of moderators. Although most sites employ moderators, their credentials are not often reported. Privacy policies are inaccessible across the board, with none readable at below a twelfth-grade level. Data safety practices are also problematic, with most sites sharing user data with third parties. The quality and safety of social networks for CKD is variable, and improvement is feasible. Suggested improvements include auditing privacy policies and data safety practices, making information about moderators easily available, and third-party audits of information posted by users to ensure the removal of misinformation.
In this study, we described the content and characteristics of 40 non-proprietary websites offering information about chronic kidney disease (CKD) and evaluate their information quality using the DISCERN scale and readability using Flesch Reading Ease (FRE) and Flesch-Kincaid (FK) grade level. The areas in which the websites scored the lowest on the DISCERN scale were whether the website: discussed knowledge gaps, presented balanced information, and was clear about the information source. Websites rated higher quality on the DISCERN scale were more difficult to read. The quality and readability of many CKD websites remain inadequate to be used as meaningful educational resources for patients who desire to learn more about CKD and treatment options.
This study investigates how people use the Internet to search for an altruistic kidney donor. Although many opinion pieces on this phenomenon have been written, this is the first qualitative study focused on online kidney solicitation from the potential recipient's point of view. Eight participants – four who successfully found donors and four who were still searching – were interviewed, and inductive content analysis was performed. Three themes appear in our data: choosing to go online to find a donor, information hubs, and information flow. These themes emphasize the process of information seeking and disclosure when using the Internet to find an altruistic kidney donor. The benefits from searching online are not limited to the possibility of finding a kidney donor. Our participants also experience a wide variety of socially supportive activities from their online networks. Additionally, our participants felt that the potential benefits of finding a donor online outweighed risks to their privacy. Not all potential recipients will find a kidney donor online. Participants indicated that through sharing educational information, staying positive, and actively maintaining their online solicitation efforts they received numerous social benefits even if they did not find a kidney donor.
Patients with lifelong health conditions such as chronic kidney disease (CKD) may search for health information online throughout the course of their illness. On the Internet, patients may encounter patient peers in online support groups (OSGs) focused on their particular chronic illness. We currently know very little about how patients assess the credibility of information posted by other patients in OSGs. This poster examines this issue, presenting data from a grounded theory study on health information seeking and personal health information disclosure in OSGs for CKD. The poster describes how patients use similarity as a credibility cue. The data demonstrate that information on OSGs is assessed differently than information presented on static websites, extending our notions of how users assess trustworthiness and credibility online. These findings also extend our understanding of how users make these judgments on the Internet by describing the development of criteria assessments over time, relative to the illness experiences of the seeker. This poster also highlights the importance of shared experience when judging trustworthiness in OSGs, a concept that has received little attention in the literature to date.
Personal health information is increasingly sought and shared on the Internet. Some people with lifelong chronic conditions turn to online support groups focused on their condition for social support, which often includes the exchange of personal health information. This trend is likely to continue, as the prevalence of chronic disease in the United States is rising. However, we do not understand how people search for and share health information in online support groups. This proposal outlines a grounded theory dissertation that will address social support, information seeking, and personal health information disclosure on online support groups for chronic kidney disease. This research proposal, the winner of the 2013 Thomson Reuters Doctoral Dissertation Fellowship, outlines a dissertation aimed towards understanding how and why people with kidney disease share personal health information in OSGs using a grounded theory approach. This work will add to our understanding of information seeking behavior, disclosure behavior, and social support, and to our knowledge of how these processes are linked.
This paper describes an exploratory study investigating the ethical implications of searching for a kidney donor online. Semi-structured interviews were conducted with eight individuals – four people who found a kidney donor online and four people who were still searching – about the process of looking for an altruistic kidney donor on the Internet. To explore ethical issues discussed by participants, the interviews were coded using the resource-product-target model of information ethics. All three types of moral issues outlined in this model were present in the data. When viewing information as a resource, participants discussed their choice to go online to find a donor, the process of encouraging others to share their solicitation message, and ways of handling requests for payment in exchange for a donation. In the information-as-product perspective, people discussed the management of their online persona. Finally, the ramifications of patients and caregivers choosing to share personal health information online was discussed when participants considered information as a target. Several fruitful areas for future research are identified in this study, which is the first qualitative study investigating the phenomenon of searching for a kidney donor online – an area of great interest to information scientists, healthcare providers, medical ethicists, and chronic kidney disease patients.
As of January 20, 2012, there were 90,621 people in the United States waiting for a kidney transplant, based on the current U.S. Organ Procurement and Transplantation Network data. In the last year, many people have been removed from the list after successfully receiving a kidney from an altruistic donor solicited online. These donors are both genetically and emotionally unrelated to the recipient, and are giving a kidney to a stranger. Solicitors find matches online through websites like thekidneyregistry.com, personal blogs, and Facebook. The number of kidney donors solicited online is almost certainly growing; this growth is expected to continue. Opinion pieces concerning donations solicited online have been written by nephrologists, transplant surgeons, and medical ethicists in recent years; nearly all of them call for further research on the myriad practical and ethical issues surrounding the topic. However, the amount of research in this area, especially from the point of view of the potential recipient, is paltry to date. This exploratory study explains and describes the online kidney solicitation process from the solicitor’s point of view. A model of online organ solicitation is offered, highlighting the role support plays in the process. This research has many practical applications: it provides recipient-based evidence about the process for medical ethicists concerned with genetic unrelated donors and could aid in the development of online interfaces for organ sharing. It also provides a base of knowledge for potential solicitors.
This paper investigates what potential users of personal health records (PHRs) think about allowing people access to their PHRs. As part of a larger study on the needs and requirements of PHR users, semi-structured interviews were conducted with 43 potential PHR users. The study participants discussed four groups that might have access to their PHRs: physicians, pharmacists, family members, and insurance companies. They talked about the benefits and drawbacks of each group viewing their PHRs and/or adding information to the records. The variety of their responses indicates the necessity for a tiered access system, where different people would have different levels of access to the PHR. In most cases, the patient would specify and maintain these access levels, although some participants preferred that physicians control access.
Scholars are increasingly using the microblogging service Twitter as a communication platform. Since citing is a central practice of scholarly communication, we investigated whether and how scholars cite on Twitter. We conducted interviews and harvested 46,515 tweets from a sample of 28 scholars and found that they do cite on Twitter, though often indirectly. Twitter citations are part of a fast-moving conversation that participants believe reflects scholarly impact. Twitter citation metrics could augment traditional citation analysis, supporting a “scientometrics 2.0.”
We conducted 28 interviews with academics on Twitter in order to determine whether they think their tweets or the tweets of the academics that they follow should be saved. Our research also addresses the question of who is responsible for carrying out the activities of selecting the tweets of academics and making them available for future use