THE ‘SEARCH-FOR METHOD’: EXAMINING INSTANCES OF SUPPORT IN FACEBOOK GROUPS FOR DONOR-CONCEIVED PEOPLE

Facebook groups represent an important resource for donor-conceived people to access information, seek advice and share their experiences with their peers. Limited research has considered how donor-conceived people create supportive relationships with peers through social media or how this form of social support contributes to donor-conceived people’s health and wellbeing. This work in progress outlines the ‘search-for method’, a practical user-led tool for discussing instances of participation in Facebook groups. The ‘search-for method’ involves inviting participants to search for their name in the search bar of a Facebook group, thereby retrieving data of all instances they have posted in the group. This paper reports on initial findings from applying the ‘search-for method’ to semi-structured interviews with administrators and members (N=30) of Facebook groups for donor-conceived people from across Australia. The ‘search-for method’ enabled the participant and researcher, as co-analysts, to track and examine specific instances of participation and interaction in the group. By scrolling through content on their own device, participants could decide how to frame their stories of support and whether to disclose sensitive information or omit experiences they did not wish to discuss. Broadly, this approach illuminated how individual and collective donor-conceived identities emerged and evolved with and through online group platforms. In doing so, it provided a framework for understanding sociality between donor-conceived peers longitudinally. This paper contributes to understandings of how digital affinities and peer intimacies develop in Facebook groups over time.

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

Background Disease modifying antirheumatic drugs (DMARDs) have transformed the treatment of numerous autoimmune and inflammatory diseases but their perceived risk of harm be a barrier to use.Methods In a retrospective mixed-methods study, we analysed conventional (c) and biologic (b) DMARDs-related calls and compared them with rest of calls (ROC) from consumers to an Australian national medicine call center operated by clinical pharmacists from September 2002 to June 2010. This includes the period where bDMARDs became available on the Pharmaceutical Benefits Scheme, the government-subsidized prescription medicines formulary. We compared caller and patient demographics, enquiry types and motivation to information-seek for both cDMARDs and bDMARDs with ROC, using a t-test for continuous data and a chi-square test for categorical data. We explored call narratives to identify common themes.Results There were 1,547 calls involving at least one DMARD. The top three cDMARD enquiry types were side effects (27.2%), interactions (21.9%), and risk versus benefit (11.7%). For bDMARDs, the most common queries involved availability and subsidized access (18%), mechanism and profile (15.8%), and side effects (15.1%). The main consumer motivations to information-seek were largely independent of medicines type and included: inadequate information (44%), wanting a second opinion (23.6%), concern about a worrying symptom (18.8%), conflicting information (6.9%), or information overload (2.3%). Question themes common to conventional and biological DMARDs were caller overemphasis on medication risk and the need for reassurance. Callers seeking information about bDMARDs generally overestimated effectiveness and focused their attention on availability, cost, storage, and medicine handling.Conclusion Consumers have considerable uncertainty regarding DMARDs and may overemphasise risk. Patients cautiously assess the benefits and risks of their DMARDs but when new treatments emerge, they tend to overestimate their effectiveness.

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

Background Disease modifying antirheumatic drugs (DMARDs) have transformed the treatment of numerous autoimmune and inflammatory diseases but their perceived risk of harm be a barrier to use.Methods In a retrospective mixed-methods study, we analysed conventional (c) and biologic (b) DMARDs-related calls and compared them with rest of calls (ROC) from consumers to an Australian national medicine call center operated by clinical pharmacists from September 2002 to June 2010. This includes the period where bDMARDs became available on the Pharmaceutical Benefits Scheme, the government-subsidized prescription medicines formulary. We compared caller and patient demographics, enquiry types and motivation to information-seek for both cDMARDs and bDMARDs with ROC, using a t-test for continuous data and a chi-square test for categorical data. We explored call narratives to identify common themes.Results There were 1,547 calls involving at least one DMARD. The top three cDMARD enquiry types were side effects (27.2%), interactions (21.9%), and risk versus benefit (11.7%). For bDMARDs, the most common queries involved availability and subsidized access (18%), mechanism and profile (15.8%), and side effects (15.1%). The main consumer motivations to information-seek were largely independent of medicines type and included: inadequate information (44%), wanting a second opinion (23.6%), concern about a worrying symptom (18.8%), conflicting information (6.9%), or information overload (2.3%). Question themes common to conventional and biological DMARDs were caller overemphasis on medication risk and the need for reassurance. Callers seeking information about bDMARDs generally overestimated effectiveness and focused their attention on availability, cost, storage, and medicine handling.Conclusion Consumers have considerable uncertainty regarding DMARDs and may overemphasise risk. Patients cautiously assess the benefits and risks of their DMARDs but when new treatments emerge, they tend to overestimate their effectiveness.

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

BackgroundDisease modifying antirheumatic drugs (DMARDs) have transformed the treatment of numerous autoimmune and inflammatory diseases but their perceived risk of harm be a barrier to use.MethodsIn a retrospective mixed-methods study, we analysed conventional (c) and biologic (b) DMARDs-related calls and compared them with rest of calls (ROC) from consumers to an Australian national medicine call center operated by clinical pharmacists from September 2002 to June 2010. This includes the period where bDMARDs became available on the Pharmaceutical Benefits Scheme, the government-subsidized prescription medicines formulary. We compared caller and patient demographics, enquiry types and motivation to information-seek for both cDMARDs and bDMARDs with ROC, using a t-test for continuous data and a chi-square test for categorical data. We explored call narratives to identify common themes.ResultsThere were 1,547 calls involving at least one DMARD. The top three cDMARD enquiry types were side effects (27.2%), interactions (21.9%), and risk versus benefit (11.7%). For bDMARDs, the most common queries involved availability and subsidized access (18%), mechanism and profile (15.8%), and side effects (15.1%). The main consumer motivations to information-seek were largely independent of medicines type and included: inadequate information (44%), wanting a second opinion (23.6%), concern about a worrying symptom (18.8%), conflicting information (6.9%), or information overload (2.3%). Question themes common to conventional and biological DMARDs were caller overemphasis on medication risk and the need for reassurance. Callers seeking information about bDMARDs generally overestimated effectiveness and focused their attention on availability, cost, storage, and medicine handling.ConclusionConsumers have considerable uncertainty regarding DMARDs and may overemphasise risk. Patients cautiously assess the benefits and risks of their DMARDs but when new treatments emerge, they tend to overestimate their effectiveness.

Information Seek and Retrieval Mechanisms Based on Interactive Dynamics Linking Technology

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As variáveis intervenientes no comportamento informacional durante o wayfinding em hospitais: implicações no design de sistemas de informação | Intervening variables in the informational behavior during healthcare wayfinding: implication for information systems design

Na orientação espacial em hospitais os usuários deparam-se com diferentes barreiras na busca por informação que os auxilie a encontrar os locais desejados. Para o design de sistemas de wayfinding a compreensão de tais barreiras pode subsidiar a geração de requisitos projetuais. Como meio de auxiliar essa compreensão, este trabalho propõe verificar quais as variáveis são identificadas pelos usuários de ambientes hospitalares na procura e uso de informação durante o wayfinding. Para tanto, inicialmente foram descritos aspectos sobre o processo de orientação espacial, localizados os artefatos gráfico-informacionais enquanto inputs cognitivos e apresentadas as variáveis intervenientes no comportamento de procura informacional. Na sequência foi realizada entrevistas com usuários para verificação dos aspectos interferentes na orientação espacial em hospitais. Os resultados apontaram as principais barreiras relativas as fontes de informação verbal e visual, apresentando a potencialidade dos dados obtidos na geração de requisitos para o design de sistemas de wayfinding.*****In spatial orientation in hospitals users are faced with different barriers in the information seek that helps them to find the desired places. For the design of wayfinding systems, the understanding of such barriers can subsidize the generation of design requirements. As a means of assiting this understanding, this paper proposes to verify which variables are identified by users of hospital environments in the search and use of information during the wayfinding. For this, it was initially described aspects of the spatial orientation process, located the graphic-informational artifacts as cognitive inputs and presented the intervening variables in the informational behaviour seek. Following interviews were conducted with users, in hospitals, to verify the interfering aspects in the wayfinding. The results pointed to the main barriers related to the verbal and visual information sources, showing the potential of the data obtained in the generation requirements for wayfinding systems design.

From Confidentiality to Work Privacy – A Transformation in a Person’s Responsibility

The confidentiality clause and the service secret are two means coming from different branches of law, public and private, but they have the same goal – to protect information, the component of a person’s patrimony, which is a more and more important issue in the world we live in. The protections provided by the two ways are different in terms of the gravity of the penalty they may involve and for this reason they may be used with discrimination, proportionally with the importance of the protected object. But in the present conditions when the information is sancta sanctorum, only this responsibility in punishment tends to dim, those interested in providing the protection of information seek for most effective and efficient punishment.

Some Key Points on Construction and Application of Agricultural Disaster Domain Ontology

Study on agriculture disaster management has recently witnessed significant progress while still remains some open problems. Therefore there is an indisputable value in building the agriculture disaster domain ontology. This study provides a proper method on the organization and expression of agriculture disaster information resources, and constructs the agriculture disaster domain ontology, which meets needs of users who are usually from difficult hierarchies. The study concludes that the construction of agriculture disaster domain ontology help users to distinguish truly useful information from a broad array of information, seek scientific imperial measures and treatment methods, and create favorable conditions for the development of the agricultural economy.

Editorial convidado

This special issue of RITA contains the papers of the Tutorials presented at the Brazilian Symposium on Computer Graphics and Image Processing, SIBGRAPI 2007. It was a pleasure to receive 17 submissions, two of them from foreign countries. The majority of them have a very high standard but, because of time and space constraints, only six of them could be accepted. Herein texts associated to five of them are presented. These papers address a number of current research issues as well as conceptual information seek by the students and researchers of the field, as summarized as follows.