Health-related Social Networks Research Articles

Associations of Sociodemographic Factors With Health-Related Social Networks Among Pre-migration Filipinos

ABSTRACT Social networks provide health information that is useful to prevent illness, promote health, and facilitate treatment for health problems. One understudied facet is which people in social networks provide health information. The present article fills a critical gap in the empirical literature by identifying which social networks are reported based on a premigrant’s sociodemographic status that operate as their source of health information. Data were analyzed from the Health of the Philippine Emigrants Study (HoPES) (n = 829) migrant sample. Findings indicated having high English proficiency and educational attainment reduces the likelihood of reporting no one in their network as a source of health information. Those who reported family/relatives are less likely to be younger, and those who reported friends are also less likely to be living-in with a partner. This article informs social work researchers and practitioners in implementing interventions among premigration immigrants to help increase and broaden their social networks.

Older Adult Health-Related Support Networks: Implications for the Design of Digital Communication Tools.

Background and ObjectivesDigital communication tools facilitate the provision of health-related social support to older adults. However, little is known about what design features make such tools most useful and feasible. The purpose of this study was to describe health-related social support networks of older adults and outline recommendations for the design of tools that facilitate the giving and receiving of support.Research Design and MethodsWe collected data through validated instruments and semistructured qualitative interviews with 88 older adults. We calculated descriptive statistics for the quantitative data and analyzed qualitative data using directed content analysis.ResultsHealth-related support networks described by our sample of generally healthy older adults varied in size from 0 to 10 members. Some networks did not include any family members, and others did not include any friends. Seventy-four percent of network members lived in the same state as the older adult participant, but only 15% of them lived with the participant. Emotional support was the main type of health-related support provided, followed by instrumental, informational, and appraisal support.Discussion and ImplicationsHealth-related support networks of older adults are varied and complex. Our results suggest that digital communication tools to promote and leverage support from network members should facilitate the involvement of friends and family regardless of their physical location, allow for the transparent allocation of concrete tasks to prevent overburdening any one network member, and facilitate sharing of personal health information with family and friends while ensuring privacy and autonomy.

Experience of Symptoms and Disease Impact in Patients with Adenomyosis.

BackgroundAdenomyosis is a poorly understood, benign disease of the uterus.ObjectiveIn this study, patient interviews were conducted to characterize the symptoms and impact of adenomyosis.MethodsThis was a cross-sectional study in which women with adenomyosis were recruited from five US clinics and a health-related social network forum. Participants (aged 18–55 years) were pre-menopausal with a history of regular menstrual cycles. Participants were interviewed about their experiences with adenomyosis, symptoms and impacts on day-to-day activities (concept elicitation), and subsequently about the occurrence, relative severity, and impact of symptoms (card-sorting exercise).ResultsIn total, 31 women were interviewed. Mean duration since onset of first adenomyosis symptom was 5.7 years; 41.9% reported severe/very severe adenomyosis. Over 50 symptoms and 30 impacts of adenomyosis were reported in the concept elicitation; 87% of symptoms were reported after 7 interviews and 78% of impacts after 5 interviews, indicating a condition with a significant symptom burden and a consistent presentation. The most common symptoms were heavy menstrual bleeding (87%), cramps (84%), and blood clots during menstrual bleeding (84%). The most common impacts were burdensome self-care hygiene (71%), and fatigue/low energy (71%). In the card-sorting exercise, the most commonly endorsed symptoms were pain during menstruation/menstrual cramps and heavy menstrual bleeding (both frequently rated as severe). The symptom with the highest impact was heavy menstrual bleeding.ConclusionInitiatives to understand women’s experiences with adenomyosis may improve management of the condition. This study provides a first step in understanding their experience and new information on the symptom profile of adenomyosis.Electronic supplementary materialThe online version of this article (10.1007/s40271-017-0284-2) contains supplementary material, which is available to authorized users.

Consumer-led health-related online sources and their impact on consumers: An integrative review of the literature.

The aim of the review was to describe consumer-led health-related online sources and their impact on consumers. The review was carried out as an integrative literature review. Quantisation and qualitative content analysis were used as the analysis method. The most common method used by the included studies was qualitative content analysis. This review identified the consumer-led health-related online sources used between 2009 and 2016 as health-related online communities, health-related social networking sites and health-related rating websites. These sources had an impact on peer support; empowerment; health literacy; physical, mental and emotional wellbeing; illness management; and relationships between healthcare organisations and consumers. The knowledge of the existence of the health-related online sources provides healthcare organisations with an opportunity to listen to their consumers' 'voice'. The sources make healthcare consumers more competent actors in relation to healthcare, and the knowledge of them is a valuable resource for healthcare organisations. Additionally, these health-related online sources might create an opportunity to reduce the need for drifting among the healthcare services. Healthcare policymakers and organisations could benefit from having a strategy of increasing their health-related online sources.

A social network analysis of supportive interactions on prenatal sites

ObjectiveThe purpose of this exploratory study was to validate and extend previous research on social support by identifying which dimensions of social support are most commonly exchanged on health-related social networking sites and how social network structure varies with each support dimension exchanged.MethodsThis research applies a multiple case study approach by examining two social networking sites that focus on pregnancy and prenatal health. For one month, support seeking and providing messages were content analyzed and a social network analysis examined the connections between members.ResultsThe sample size consisted of 525 support-seeking messages and 1965 support-providing messages. Findings indicate that participants requested informational and emotional support more than esteem and network support, with no requests for tangible support. Findings also suggest participants substituted emotional support for informational support when they were unable to provide the information sought. The social network analysis showed that network structure varied across support dimensions, with the informational and emotional support networks having the largest number of members and greatest density and reciprocity.ConclusionsThis study suggests that online support networks are fairly effective in meeting participants’ needs. The support dimension sought was generally provided and when it was not another dimension of support may have been substituted; thus, participants may have benefitted in unintended ways. The data also suggest there may be an optimal network size to support member engagement, whereby too large of a network may facilitate diffusion of responsibility and too small a network may not facilitate enough momentum to support a well-connected community.

Balancing opioid-induced gastrointestinal side effects with pain management: Insights from the online community.

Opioids cause gastrointestinal (GI) symptoms such as nausea, vomiting, pain, and (in 40 percent) constipation that diminish patients' quality of life. Outside traditional surveys, little is known about the opioid-induced constipation (OIC) patient experience and its impact on pain management. The purpose of this study was to use data from social media platforms to qualitatively examine patient beliefs about OIC and other prominent GI side effects, their impact on effective pain management and doctor-patient interaction. The authors collected Tweets from March 25 to July 31, 2014, and e-forum posts from health-related social networking sites regardless of timestamp. The authors identified specific keywords related to opioids and GI side effects to locate relevant content in the dataset, which was then manually coded using ATLAS.ti software. The authors examined 2,519,868 Tweets and more than 1.8 billion e-forum posts, of which, 88,586 Tweets and 9,767 posts satisfied the search criteria. Three thousand three individuals experienced opioidinduced GI side effects, mostly related to phenanthrenes (n = 1,589), and 1,274 (42.4 percent) individuals described constipation. Over-the-counter medications and nonevidence-based natural approaches were most commonly used to alleviate constipation. Many individuals questioned, rotated, reduced, or stopped their opioid treatments as a result of their GI side effects. Investigation of social media reveals a struggle to balance pain management with opioid-induced GI side effects, especially constipation. Individuals are often unprepared to treat OIC, to modify opioid regiments without medical advice, and to resort to using natural remedies and treatments lacking scientific evidence of effectiveness. These results identify opportunities to improve physician-patient communication and explore effective treatment alternatives.

A Privacy Preservation Model for Health-Related Social Networking Sites.

The increasing use of social networking sites (SNS) in health care has resulted in a growing number of individuals posting personal health information online. These sites may disclose users' health information to many different individuals and organizations and mine it for a variety of commercial and research purposes, yet the revelation of personal health information to unauthorized individuals or entities brings a concomitant concern of greater risk for loss of privacy among users. Many users join multiple social networks for different purposes and enter personal and other specific information covering social, professional, and health domains into other websites. Integration of multiple online and real social networks makes the users vulnerable to unintentional and intentional security threats and misuse. This paper analyzes the privacy and security characteristics of leading health-related SNS. It presents a threat model and identifies the most important threats to users and SNS providers. Building on threat analysis and modeling, this paper presents a privacy preservation model that incorporates individual self-protection and privacy-by-design approaches and uses the model to develop principles and countermeasures to protect user privacy. This study paves the way for analysis and design of privacy-preserving mechanisms on health-related SNS.

It's Better to Give Than to Receive: The Role of Social Support, Trust, and Participation on Health-Related Social Networking Sites

Nearly 60% of American adults and 80% of Internet users have sought health information online. Moreover, Internet users are no longer solely passive consumers of online health content; they are active producers as well. Social media, such as social networking sites, are increasingly being used as online venues for the exchange of health-related information and advice. However, little is known about how participation on health-related social networking sites affects users. Research has shown that women participate more on social networking sites and social networks are more influential among same-sex members. Therefore, this study examined how participation on a social networking site about pregnancy influenced members' health-related attitudes and behaviors. The authors surveyed 114 pregnant members of 8 popular pregnancy-related sites. Analyses revealed that time spent on the sites was less predictive of health-related outcomes than more qualitative assessments such as trust in the sites. Furthermore, providing support was associated with the most outcomes, including seeking more information from additional sources and following recommendations posted on the sites. The implications of these findings, as well as directions for future research, are discussed.

Online Activity and Participation in Treatment Affects the Perceived Efficacy of Social Health Networks Among Patients With Chronic Illness

BackgroundThe use of online health-related social networks for support, peer-to-peer connections, and obtaining health information has increased dramatically. Participation in an online health-related social network can enhance patients’ self-efficacy and empowerment, as they are given knowledge and tools to manage their chronic health condition more effectively. Thus, we can deduce that patient activation, the extent to which individuals are able to manage their own health care, also increases. However, little is known about the effects of participation in online health-related social networks and patient activation on the perceived usefulness of a website across disease groups.ObjectiveThe intent of the study was to evaluate the effects and benefits of participation in an online health-related social network and to determine which variables predict perceived site usefulness, while examining patient activation.MethodsData were collected from “Camoni”, the first health-related social network in the Hebrew language. It offers medical advice, including blogs, forums, support groups, internal mail, chats, and an opportunity to consult with experts. This study focused on the site’s five largest and most active communities: diabetes, heart disease, kidney disease, spinal injury, and depression/anxiety. Recruitment was conducted during a three-month period in which a link to the study questionnaire was displayed on the Camoni home page. Three questionnaires were used: a 13-item measure of perceived usefulness (Cronbach alpha=.93) to estimate the extent to which an individual found the website helpful and informative, a 9-item measure of active involvement in the website (Cronbach alpha=.84), and The Patient Activation Measure (PAM-13, Cronbach alpha=.86), which assesses a patient’s level of active participation in his or her health care.ResultsThere were 296 participants. Men 30-39 years of age scored higher in active involvement than those 40-49 years (P=.03), 50-64 years (P=.004), or 65+ years (P=.01). Respondents 20-29 years of age scored higher in perceived usefulness than those 50-64 years (P=.04) and those 65+ years (P=.049). Those aged 20-29 years scored significantly lower on the PAM-13 scale than those aged 30-39 years (P=.01) and 50-64 years (P=.049). Men and women had similar PAM-13 scores (F 9,283=0.17, P=.76). Several variables were significant predictors of perceived usefulness. Age was a negative predictor; younger age was indicative of higher perceived usefulness. Active involvement was a positive predictor. There was a negative relationship found between PAM-13 scores and perceived usefulness, as taking a less active role in one’s own medical care predicted higher perceived website usefulness. A trend toward higher frequency of website activity was associated with increased perception of usefulness.ConclusionsOnline health-related social networks can be particularly helpful to individuals with lower patient activation. Our findings add information regarding the social and medical importance of such websites, which are gradually becoming an inseparable part of day-to-day chronic disease management in the community.

Methods for Inferring Health-Related Social Networks among Coworkers from Online Communication Patterns

Studies of social networks, mapped using self-reported contacts, have demonstrated the strong influence of social connections on the propensity for individuals to adopt or maintain healthy behaviors and on their likelihood to adopt health risks such as obesity. Social network analysis may prove useful for businesses and organizations that wish to improve the health of their populations by identifying key network positions. Health traits have been shown to correlate across friendship ties, but evaluating network effects in large coworker populations presents the challenge of obtaining sufficiently comprehensive network data. The purpose of this study was to evaluate methods for using online communication data to generate comprehensive network maps that reproduce the health-associated properties of an offline social network. In this study, we examined three techniques for inferring social relationships from email traffic data in an employee population using thresholds based on: (1) the absolute number of emails exchanged, (2) logistic regression probability of an offline relationship, and (3) the highest ranked email exchange partners. As a model of the offline social network in the same population, a network map was created using social ties reported in a survey instrument. The email networks were evaluated based on the proportion of survey ties captured, comparisons of common network metrics, and autocorrelation of body mass index (BMI) across social ties. Results demonstrated that logistic regression predicted the greatest proportion of offline social ties, thresholding on number of emails exchanged produced the best match to offline network metrics, and ranked email partners demonstrated the strongest autocorrelation of BMI. Since each method had unique strengths, researchers should choose a method based on the aspects of offline behavior of interest. Ranked email partners may be particularly useful for purposes related to health traits in a social network.

Information Seeking over the Course of Illness: The Experience of People with Fibromyalgia

Although there is literature addressing the fibromyalgia illness experience, there has been limited work concerning how people with fibromyalgia utilize health information. The aim of this study was therefore to investigate the information needs and information-seeking patterns of such individuals, and how these might change over time. Data were collected through an online survey of fibromyalgia-related information behaviours (N = 190). The participants were recruited through two methods: an email invitation sent out over a university listserv including faculty, staff and students, and invitational posts on fibromyalgia discussion boards on various health-related websites. Respondents used the internet most frequently, but also placed great value on information from others, including healthcare practitioners, family and friends. Among the online sources, organization websites, health portals and health-related social networking sites were most frequently used. Topics of interest to people with fibromyalgia vary as they move from an initial stage of confusion, to diagnosis and eventually to a stage of equilibrium in which they are satisfied with their management of their condition. Aside from symptoms and treatments, topics often reflect a need to understand the meaning of their condition and coping skills. The areas of information need identified in the present study can be used to tailor patient education materials and information services to address contextual and temporal factors in the illness experiences of those with fibromyalgia.

The German Young Olympic Athletes' Lifestyle and Health Management Study (GOAL Study): design of a mixed-method study

BackgroundIn order to perform at top levels, elite athletes have to both protect and risk their health at the same time. Adolescent elite athletes have the additional challenge of coping with substantial physical, psychological and social transformations. The contradictory phenomenon of protecting and risking the adolescent athletes' health in sports challenges the development of health promotion and protection strategies. The GOAL Study (German Young Olympic Athletes' Lifestyle and Health Management Study) analyzes the individual and organizational management of health in adolescent elite sports.Methods/designWe combine quantitative and qualitative approaches in a mixed-method study. This allows us to gather a broad range of representative information on squad athletes from all Olympic disciplines as well as in-depth information on four selected Olympic disciplines (artistic gymnastics, biathlon, handball and wrestling). Within the quantitative section we attempt to identify the young athletes' health and nutrition behavior, their subjective health state and their lay health representations, health-related social networks, and structures of medical attendance. 1138 national team level athletes born between 1992 and 1995 from 51 Olympic disciplines responded to the questionnaire (response rate: 61,75%). The qualitative section investigates the meaning and relevance of health and nutrition within the athletes' sports specific surroundings, the impact of biographic backgrounds on individual health behavior, and sports specific cultures of health, nutrition and risk. We interviewed 24 athletes and 28 coaching and medical experts, and carried out 14 multi-day participant observations at training sessions and competitions.ConclusionsThe studies' results will serve as the basis for developing tailored health promotion strategies to be in cooperation with German elite sports associations.

Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data

BackgroundConsumer health vocabularies (CHVs) have been developed to aid consumer health informatics applications. This purpose is best served if the vocabulary evolves with consumers’ language.ObjectiveOur objective was to create a computer assisted update (CAU) system that works with live corpora to identify new candidate terms for inclusion in the open access and collaborative (OAC) CHV.MethodsThe CAU system consisted of three main parts: a Web crawler and an HTML parser, a candidate term filter that utilizes natural language processing tools including term recognition methods, and a human review interface. In evaluation, the CAU system was applied to the health-related social network website PatientsLikeMe.com. The system’s utility was assessed by comparing the candidate term list it generated to a list of valid terms hand extracted from the text of the crawled webpages.ResultsThe CAU system identified 88,994 unique terms 1- to 7-grams (“n-grams” are n consecutive words within a sentence) in 300 crawled PatientsLikeMe.com webpages. The manual review of the crawled webpages identified 651 valid terms not yet included in the OAC CHV or the Unified Medical Language System (UMLS) Metathesaurus, a collection of vocabularies amalgamated to form an ontology of medical terms, (ie, 1 valid term per 136.7 candidate n-grams). The term filter selected 774 candidate terms, of which 237 were valid terms, that is, 1 valid term among every 3 or 4 candidates reviewed.ConclusionThe CAU system is effective for generating a list of candidate terms for human review during CHV development.

The World of e-Patients: A Content Analysis of Online Social Networks Focusing on Diseases

as the participatory Web developed to create virtual worlds and communities, health institutions and activists discovered Web 2.0 tools, in particular the creation of health-related online social networks. To analyze the existing online social networks dedicated to health issues, we performed an active search on the Internet for such Web sites and analyzed their features according to the content analysis method. the study was performed in September and October 2009. We analyzed a sample of health social networks for patients, selected using four common search engines. A codebook was elaborated to investigate four areas: general information; technical characteristics and utilities; characteristics of the Web site and contents, both general and related to the online community. the search led to a sample of 41 social networks. Twenty-three Web sites (56.1%) were dedicated to several diseases, the others to one only. Although the majority of the sample (87.8%) provided a way to contact the Web site, only five (12.2%) showed the name of the author or operating organization. Eight Web sites (19.5%) indicated one or more sponsors, and nine (22.0%) named one or more partners. It was often hard to tell whether an institution mentioned was a sponsor or a partner. Five Web sites (12.2%) enabled users to buy health-related products online. Twelve Web sites (29.3%) offered users the chance to search for doctors, and 12 (29.3%) gave therapeutic information. Two Web sites (4.9%) published aggregate statistical data about the patients registered with the social network. the data reveal the high heterogeneity of health-related social networks and raise interesting considerations on such controversial topics as the quality of online health information, research perspectives, interactivity, and empowerment. In particular, our findings are relevant to criticism regarding the openness and transparency of these Web sites, the use of personal data, and privacy issues.

Talking about your health to strangers: understanding the use of online social networks by patients

The internet has become a participatory place where everyone can contribute and interact with others. In health in particular, social media have changed traditional patient–physician relationships. Patients are organising themselves in groups, sharing observations and helping each other, although there is still little evidence of the effectiveness of these online communities on people's health. To understand why and how people use health-related sites, we studied these sites and identified three dimensions characterising most of them: informational/supportive; general/focused; and new relationships/existing ones. We conducted an online survey about the use of health-related social networking (SN) sites and learnt that, consistent with previous research, most patients were seeking information about their medical condition online, while, at the same time, still interacting with health professionals to talk about sensitive information and complex issues. We also found that, while people's natural social network played an important role for emotional support, sometimes, people chose to not involve their family, but instead interact with peers online because of their perceived support and ability to understand someone's experience, and also to maintain a comfortable emotional distance. Finally, our results show that people using general SN sites do not necessarily use health-related sites and vice versa.

Supporting Cancer Patients through the Continuum of Care: A View from the Age of Social Networks and Computer-Mediated Communication

Almost since its inception, the Internet has been used by ordinary people to connect with peers and to exchange health-related information and support. With the rapid development of software applications deliberately designed to facilitate social interaction, a new era is dawning in which patients and their loved ones can collaboratively build knowledge related to coping with illness, while meeting their mutual supportive care needs in a timely way, regardless of location. In this article, we provide background information on the use of "one-to-one" (for example, e-mail), "one-to-many" (for example, e-mail lists), and "many-to-many" (for example, message boards and chat rooms, and more recently, applications associated with Web 2.0) computer-mediated communication to nurture health-related social networks and online supportive care. We also discuss research that has investigated the use of social networks by patients, highlight opportunities for health professionals in this area, and describe new advances that are fuelling this new era of collaboration in the management of cancer.