Social networks : the future for health care delivery

With the rapid growth of online social networking for health, health care systems are experiencing an inescapable increase in complexity. This is not necessarily a drawback; self-organising, adaptive networks could become central to future health care delivery. This paper considers whether social networks composed of patients and their social circles can compete with, or complement, professional networks in assembling health-related information of value for improving health and health care. Using the framework of analysis of a two-sided network – patients and providers – with multiple platforms for interaction, we argue that the structure and dynamics of such a network has implications for future health care. Patients are using social networking to access and contribute health information. Among those living with chronic illness and disability and engaging with social networks, there is considerable expertise in assessing, combining and exploiting information. Social networking is providing a new landscape for patients to assemble health information, relatively free from the constraints of traditional health care. However, health information from social networks currently complements traditional sources rather than substituting for them. Networking among health care provider organisations is enabling greater exploitation of health information for health care planning. The platforms of interaction are also changing. Patient-doctor encounters are now more permeable to influence from social networks and professional networks. Diffuse and temporary platforms of interaction enable discourse between patients and professionals, and include platforms controlled by patients. We argue that social networking has the potential to change patterns of health inequalities and access to health care, alter the stability of health care provision and lead to a reformulation of the role of health professionals. Further research is needed to understand how network structure combined with its dynamics will affect the flow of information and potentially the allocation of health care resources

Evaluating barriers to and impacts of rural broadband access

The lack of adequate broadband infrastructure persists in many rural communities. Beyond funding, additional barriers persist, such as digital literacy and community-level self-efficacy. As a result, the first contribution articulates barriers at the organizational level. This work proposes a framework based on the Theory of Planned Behavior to highlight stakeholder dynamics that have constrained Regional Planning Commissions from advancing broadband infrastructure in rural areas. One approach to address these barriers is to provide stakeholders with analytical tools to evaluate the benefits and costs of various broadband options for their community since there is not a one-size-fits-all solution. To this end, there are three contributions that provide guidance for evaluating improved broadband access. The first solution proposes a benefit-cost analysis at the county-level where changes in tax revenue are used to monetize the impact of rural broadband for a hypothetical Midwest county. The second solution demonstrates a method for evaluating the benefit of broadband in terms of social impact on education, employment, and healthcare in a small under-served community in northwest Missouri. Pre- and post-survey data were used to conduct comparisons between the targeted community, which received faster internet, and control communities. The third solution describes a socio-technical reference architecture to support the development of community-driven wireless broadband projects. By providing analytical tools for evaluating the impact of broadband solutions for rural communities, this research increases the capability of local communities to identify and advocate for broadband solutions that fit their needs --Abstract, page iv

Governing Privacy in Knowledge Commons

Scholars from various disciplines explore privacy governance using the Governing Knowledge Commons framework. Case studies drawn from contexts such as academia, social media, mental health, and IoT provide insights into how privacy shapes community knowledge production. This title is also available as Open Access on Cambridge Core

The First 25 Years of the Bled eConference: Themes and Impacts

The Bled eConference is the longest-running themed conference associated with the Information Systems discipline. The focus throughout its first quarter-century has been the application of electronic tools, migrating progressively from Electronic Data Interchange (EDI) via Inter-Organisational Systems (IOS) and eCommerce to encompass all aspects of the use of networking facilities in industry and government, and more recently by individuals, groups and society as a whole. This paper reports on an examination of the conference titles and of the titles and abstracts of the 773 refereed papers published in the Proceedings since 1995. This identified a long and strong focus on categories of electronic business and corporate perspectives, which has broadened in recent years to encompass the democratic, the social and the personal. The conference\u27s extend well beyond the papers and their thousands of citations and tens of thousands of downloads. Other impacts have included innovative forms of support for the development of large numbers of graduate students, and the many international research collaborations that have been conceived and developed in a beautiful lake-side setting in Slovenia

Misinformation in Encounters : A Qualitative Study of Misinformation as a Social Phenomenon

Current research tends to see misinformation as a negative type of information in online environments, and fact-checking and improved information literacy are seen as solutions to the problem of misinformation. Considering misinformation only from this viewpoint is problematic because it does not consider misinformation as a type of information in our everyday information environment. The aim of this thesis is to broaden the understanding of misinformation as a nuanced concept and as a social and situated phenomenon affected by different factors. Encounters are used as means of clarifying misinformation. New knowledge of misinformation is needed to better address it and problems with it in different contexts and situations. This thesis adopts the definition of misinformation as inaccurate, incomplete, vague, or ambiguous information that is affected by social, cultural, historical, contextual, and situational factors. It studies the misinformation people encounter in their everyday lives, what factors affect it (specifically, what role encounters play in this process), how misinformation can be studied, and how to manage misinformation more efficiently. These questions were studied in the context of support with information (i.e. holistic ways to help people access, use, and understand information) and, more specifically, in two contexts where such support is given: asylum seekers supported by volunteers and youth supported by youth services. In these contexts, misinformation may be extremely challenging, but simply providing accurate information without considering factors surrounding misinformation is inadequate, and suitable ways of providing and discussing information should be developed. Misinformation was studied indirectly through interviews with people who provided support with information (i.e. volunteers and youth service workers). The analysis of the interview discussions contributed to the qualitative methodological approaches to studying misinformation. Both direct questions and indirect discussions on misinformation were found to be important for eliciting rich data. The empirical findings revealed different types of misinformation connected with authorities and official structures (outdated, incomplete, or conflicting information and perceived intimidation). Different strategies can be used when giving support with information to make misinformation less challenging, the most important of which is to encounter all people with respect and as human beings when supporting their access to and understanding of information. The research findings highlighted the importance of encounters. The framework for caring encounter was used for analysing the social factors that influence misinformation. Caring encounters mitigate misinformation, whereas uncaring encounters or a complete lack of encounters make it challenging for people to access, understand, and use information. The research findings can be used to improve information support and services by addressing factors surrounding misinformation. Misinformation is, thus, a social construct that should be placed in the wider context of information and seen as an unavoidable part of our information environment.Misinformation ses oftast inom aktuell forskning som en negativ typ av information på internet, och faktagranskning och bättre informationskompetens ses som lösningar till misinformation. Att se på misinformation enbart ur denna synvinkel är problematiskt eftersom då förstås misinformation inte som en del av vår vardagliga informationsmiljö. Syftet med denna avhandling är att förstå misinformation som ett nyanserat begrepp och socialt fenomen som påverkas av olika faktorer. Möten används som en faktor för att klargöra misinformation. Ny kunskap om misinformation behövs för att bättre förstå och lösa de problem som uppstår i olika kontexter och situationer där misinformation förekommer. Denna avhandling använder definitionen av misinformation som felaktig, ofullständig, oklar och mångtydig information som påverkas av sociala, kulturella, historiska, kontextuella och situationsbundna faktorer. Det undersöks hurdan misinformation människor kommer i kontakt med i sin vardag, vilka faktorer som påverkar misinformationen och mera specifikt, hurdan roll bemötande har i den processen. Vidare fokuserar avhandlingen på hur misinformation kan studeras och vad man kan göra åt den. Dessa frågor forskas i kontexten av stöd med information (holistiska sätt att hjälpa andra med tillgång, förståelse och användning av information), som består av ytterligare två sammanhang: asylsökande som stöds av volontärer och unga som stöds av ungdomsservice. Misinformation kan vara ett stort problem i dessa sammanhang, men det är inte tillräckligt att enbart ge rätt information utan den måste ges och diskuteras på ett för mottagaren lämpligt sätt, dvs. läggas in i en större kontext. I denna avhandling studerades misinformation indirekt via människor som ger stöd med information, dvs. volontärer och ungdomsservicearbetare. Genom att analysera diskussionen i intervjuerna, bidrog denna studie till den kvalitativa forskningen om misinformation. Både direkta frågor och indirekt diskussion behövs för att samla in mångsidiga data. De empiriska resultaten visade att det finns olika typer av misinformation i samband med myndigheter och officiella strukturer: föråldrad, ofullständig och motstridig information samt upplevt hot. Det finns olika strategier som kan användas för att lindra problemen med misinformation. Viktigast är att bemöta en människa med respekt för att stöda hens tillgång till och förståelse av information. Resultaten i denna avhandling visade hur viktiga möten är. Ramverket för vårdande möte användes för att analysera de sociala faktorer som definierar misinformation. Ett vårdande möte kan göra det lättare att hantera misinformation medan icke-vårdande möten och brist på möten överlag försämrar människors möjlighet att nå, förstå och använda information. Resultaten kan användas för att utveckla stöd med information och informationstjänster genom att särskilt betona faktorer som påverkar misinformation. Misinformation är ett socialt begrepp som borde läggas in i en större sammanhang och ses som en oundviklig och naturlig del av vår informationsmiljö

Examination of Online Health Information Seeking Effectiveness: Case Studies of Online Health Communities in COPD Patients

When people access online health information, unfortunately, they have access to both clinically accurate and inaccurate information that they may then utilize to make informed personal health decisions. This research fills a gap in the literature of online health communities as they relate to chronic obstructive pulmonary disease (COPD). The conduct of this research required a multi-phased and multi-method approach, best presented in three distinct essays. In Essays 1 and 2, data gathering within two online health communities specific to COPD allowed this study to address three research questions: (1) what are the information needs of COPD patients that result in their participation in online health communities; (2) what are the information sources offered to the participants in these online communities; and (3) is the information obtained via those communities credible. Essay 1 harvested data from a moderated website hosted by a non-profit organization for patients with COPD and Essay 2 harvested data from a non-moderated Facebook group also serving this unique group. Data Miner, a Chrome extension designed to extract data, was used to collect data, key words and themes which brought an understanding of the health information needs of participants and identified what health information sources were preferred. Using NIH guidelines, the credibility of sources exchanged were evaluated for both groups. The research presented in Essay 1 showed that COPD patients have health information needs and that a clinically monitored social health online community, that is available 24/7 to answer questions that arise at the time of need, provides much needed support. The research in Essay 2 illustrates the need for healthcare workers to be aware of unmoderated sites and promote these sites for the purpose of socialization only, and not for medical information. Building on the knowledge gained through the data analysis in Essays 1 and 2 and based on the theoretical frameworks established in the health belief model, social exchange theory, and the technology acceptance model, Essay 3 generated a new integrated model that seeks to understand information seeking effectiveness in online health communities was proposed. This model identifies the relationships between the types of disease specific information sought by members of 65 COPD Facebook groups, and member success in acquiring credible and clinically accurate health information to use in making health decisions related to disease management and the development of effective health management behaviors. Structural equation modeling was utilized to analyze survey responses and test the proposed model for statistical significance This study has important implications for health educators and medical professionals that will enhance their understanding of the benefits of online peer health communities and will guide them in providing their patients with an "information prescription" guiding them to clinically accurate and understandable, disease specific health information between office visits and at the patient's time of need

Shining a light: Active participation in a mental health Internet support group

Internet Support Groups (ISGs) are a valued and popular source of health information and support among consumers and carers. Although ISGs are premised upon mutual help, it has been observed that only a small minority of users, of the order of 1%, are responsible for the majority of activity. Despite their potential importance to the outcomes and sustainability of online groups, little is known about the characteristics of these participants or the nature of their participation. This thesis comprises a systematic review of the literature on styles of participation in ISGs followed by a series of five empirical studies focusing on the nature of participation in a Mental Health Internet Support Group (MHISG). These studies sought to address fundamental gaps in our knowledge regarding active participation in an MHISG, posing the questions: ‘Who participates?’, ‘With whom do they communicate?’, ‘What do they communicate about?’ and ‘How do these factors differ as a function of user engagement?’. These questions were addressed using log data generated by all active users (n=2932) of the MHISG ‘BlueBoard’ and a mixture of qualitative and quantitative methods including novel analyses, such as social network modularity and topic modelling algorithms. It was found that the demographic characteristics of higher- and lower-engaged users were broadly similar, although the members of the higher-engaged group were older and more likely to identify as consumers. Network analysis demonstrated users communicated with each other in a pattern that resembled five generational cohorts transcending disorder-specific subforums, in which the highest-engaged users of each cohort were central and registered earlier than the majority of other users. Topic modelling and qualitative content analysis revealed the content of the communications of the two groups differed. The communications of higherengaged users appeared to reflect a consumer model of recovery and those of lower-engaged users a medical model of recovery. However, higher-engaged users modified the content of their responses when communicating with lower-engaged users. Qualitative analysis of users’ initial posts revealed higher- and lower-engaged users differed in terms of their ‘awareness’ characteristics at the outset of participation, with higher-engaged users demonstrating greater interpersonal-, mental health- and self-awareness. Based on these findings, this thesis presents ‘The Tripartite Model of MHISG Participation’ which, contrary to prevailing assumptions, posits that differences in posting frequency are associated with different styles of active participation across the spectrum of engagement. The higher end comprises a minority group of users—referred to as ‘mutual helpers’—who are central, aware and proactive about participating in peer support for their ongoing recovery. At the lower end, the majority of users, referred to as ‘active help seekers’ and ‘active help providers’, participate in transient and asymmetrical exchanges, often with ‘mutual helpers’. Those who do not post are ‘passive followers and help seekers’. The model is iterated for each cohort. In addition to extending our scientific knowledge base, and informing the above new model of user participation, these findings are of potential relevance to the design of future research studies, managers of Internet support groups and policy makers

Silently panicking:a thematic analysis of a UK-based online peer support forum for fathers of pre-school children

In the United Kingdom, professional-led parenting support is largely aimed at mothers (Donetto et al., 2013). Gender expectations on men may result in barriers to fathers seeking advice or support about parenting. Increasingly, people are turning to the internet for advice and information, and also to share their experiences (Ziebland & Wyke, 2012). The purpose of this thesis was to investigate how fathers of pre-school children sought help by using a UK-based online discussion forum, and what the messages indicated about how they negotiated the competing demands and expectations on them. Taking a constructionist perspective, a thematic analysis of 835 posts explored themes of fatherhood, masculinity and online peer support. The findings demonstrated that fathers experienced challenges during the transition to fatherhood, and in the early years of parenting. Within the discussion boards, they sought and received information and social support, and both self-disclosure and self-help mechanisms were evident. The fatherhood roles that the men practiced were nuanced and fluid, and the fathers drew upon a range of strategies to mitigate their help seeking and thereby maintain their masculine status. The online nature of the communication also removed some of the constraints of expected masculine behaviour. However, as engagement with the discussion board developed, reciprocity and universality became stronger characteristics of the communication. The interplay between configurations of gendered practice was articulated. The thesis concluded that online peer support is an acceptable and appropriate form of support for fathers. Recommendations for health professionals were made, and a model of the fathers’ engagement with the discussion forum was developed