Amyotrophic Lateral Sclerosis (ALS) is a progressively debilitating neuro-degenerative condition that occurs in adulthood and targets the motor neurons. Social support is crucial to the well-being and quality of life of people with unpredictable and incurable diseases such as ALS.Members of the PatientsLikeMe (PLM) ALS online support community share social support but 2 also exchange and build distributed knowledge within their discussion forum. This qualitative analysis of 1000 posts from the PLM ALS online discussion examines the social support within the PLM ALS online community, and explores ways community members share and build knowledge.The analysis responds to three research questions: RQ1: How and why is knowledge shared among the distributed participants in the PLM-ALS threaded discussion forum?; RQ2: How do the participants in the PLM ALS threaded discussion forum work together to discover knowledge about treatments and to keep knowledge discovered over time?; and RQ3: How do participants in the PLM-ALS forum co-create and treat authoritative knowledge from multiple sources including the medical literature, health care professionals, lived experiences of patients and "other" sources of information such as lay literature and alternative health providers? The findings have implications for supporting knowledge sharing and discovery in addition to social support for patients.
ObjectiveThis scoping review identified the emerging and evolving roles of health information professionals (HIPs) in a range of tasks and settings, as they adapt to varied user needs, while keeping up with changing medical landscapes to provide evidence-based information support in grand rounds and scholarly research. The review aims to inform library school students about expected entry-level job qualifications and faculty about adaptable changes to specialized HIP curricula.MethodsThe authors examined 268 peer-reviewed journal articles that concentrated on evolving HIP roles, professional settings, and contexts by retrieving results from several multidisciplinary databases.ResultsHIPs, who generally serve as “embedded librarians,” are taking on more active roles as collaborators, research experts, and liaisons, replacing more passive and exclusive roles as information providers and outreach agents or research assistants. These evolving roles in the reviewed literature were broken into nine categories in approximate order of prominence.ConclusionsA new model linking these evolving roles to the Medical Library Association (MLA) fundamental professional competencies was developed to provide an operational examination and research-based evidence for adapting HIP continuing education curriculum learning outcomes, course content and delivery, and student career pathways for existing graduate HIP specialization courses in library programs. The model indicates each role’s connection to the MLA professional competencies, based on MLA’s detailed description of each competency. A better understanding of HIP demands and expectations will enhance the capacity of library programs to prepare students in HIP specializations.
Employing approaches adopted from studies of library and information science (LIS) research trends performed by Järvelin et al., this content analysis systematically examines the evolution and distribution of LIS research topics and data collection methods at 6‐year increments from 2006 to 2018. Bibliographic data were collected for 3,422 articles published in LIS journals in the years 2006, 2012, and 2018. While the classification schemes provided in the Järvelin studies do not indicate much change, an analysis of subtopics, data sources, and keywords indicates a substantial impact of social media and data science on the discipline, which emerged at some point between the years of 2012 and 2018. These findings suggest a type of shift in the focus of LIS research, with social media and data science topics playing a role in well over one‐third of articles published in 2018, compared with approximately 5% in 2012 and virtually none in 2006. The shift in LIS research foci based on these two technologies/approaches appears similar in extent to those produced by the introduction of information systems in library science in the 1960s, or the Internet in the 1990s, suggesting that these recent advancements are fundamental to the identity of LIS as a discipline.
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