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BACKGROUND: Advancements in cancer treatment and survivorship rely on participation in research and access to health records. METHODS: This study explored preferences for data access and sharing in 14 workshops with 42 community members, most of whom were a cancer survivor or carer. Various scenarios for data access and sharing were presented and discussed, with participants' preferences summarized using descriptive statistics. Reasons underlying these preferences were identified through a thematic analysis of workshop transcripts. RESULTS: Most participants indicated a willingness for researchers to use their self-report data and current health records for a specific research project (86%). Many were also willing for their self-report data and current (62%) or all future (44%) health records to be shared with other researchers for use in other studies if made aware of this. Willingness to consent to data access and sharing data in cancer research was influenced by: (i) the potential for data sharing to advance medical discoveries and benefit people impacted by cancer in the future, (ii) transparency around researchers' credibility and their intentions for data sharing, (iii) level of ownership and control over data sharing, and (iv) protocols for privacy and confidentiality in data sharing. CONCLUSIONS: Based on these themes, we present practical strategies for optimizing data access and sharing in cancer research.
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Difusión de la Información , Neoplasias , Investigación Cualitativa , Humanos , Femenino , Masculino , Neoplasias/terapia , Neoplasias/psicología , Persona de Mediana Edad , Adulto , Confidencialidad , Anciano , Investigación BiomédicaRESUMEN
PURPOSE: In Canada, health data are siloed, slowing bioinnovation and evidence generation for personalized cancer care. Secured data-sharing platforms (SDSPs) can enable data analysis across silos through rapid concatenation across trial and real-world settings and timely researcher access. To motivate patient participation and trust in research, it is critical to ensure that SDSP design and oversight align with patients' values and address their concerns. We sought to qualitatively characterize patient preferences for the design of a pan-Canadian SDSP. METHODS: Between January 2022 and July 2023, we conducted pan-Canadian virtual focus groups with individuals who had a personal history of cancer. Following each focus group, participants were invited to provide feedback on early-phase analysis results via a member-checking survey. Three trained qualitative researchers analyzed data using thematic analysis. RESULTS: Twenty-eight individuals participated across five focus groups. Four focus groups were conducted in English and one in French. Thematic analysis generated two major and five minor themes. Analytic themes spanned personal and population implications of data sharing and willingness to manage perceived risks. Participants were supportive of increasing access to health data for precision oncology research, while voicing concerns about unintended data use, reidentification, and inequitable access to costly therapeutics. To mitigate perceived risks, participants highlighted the value of data access oversight and governance and informational transparency. CONCLUSION: Strategies for secured data sharing should anticipate and mitigate the risks that patients perceive. Participants supported enhancing timely research capability while ensuring safeguards to protect patient autonomy and privacy. Our study informs the development of data-governance and data-sharing frameworks that integrate real-world and trial data, informed by evidence from direct patient input.
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Grupos Focales , Difusión de la Información , Prioridad del Paciente , Medicina de Precisión , Humanos , Canadá , Femenino , Masculino , Medicina de Precisión/métodos , Persona de Mediana Edad , Adulto , Anciano , Oncología Médica , Neoplasias/terapia , Neoplasias/psicologíaRESUMEN
To inform clinical trial design and real-world precision pediatric oncology practice, we classified diagnoses, assessed the landscape of mutations, and identified genomic variants matching trials in a large unselected institutional cohort of solid tumors patients sequenced at Dana-Farber / Boston Children's Cancer and Blood Disorders Center. Tumors were sequenced with OncoPanel, a targeted next-generation DNA sequencing panel. Diagnoses were classified according to the International Classification of Diseases for Oncology (ICD-O-3.2). Over 6.5 years, 888 pediatric cancer patients with 95 distinct diagnoses had successful tumor sequencing. Overall, 33% (n = 289/888) of patients had at least 1 variant matching a precision oncology trial protocol, and 14% (41/289) were treated with molecularly targeted therapy. This study highlights opportunities to use genomic data from hospital-based sequencing performed either for research or clinical care to inform ongoing and future precision oncology clinical trials. Furthermore, the study results emphasize the importance of data sharing to define the genomic landscape and targeted treatment opportunities for the large group of rare pediatric cancers we encounter in clinical practice.
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Secuenciación de Nucleótidos de Alto Rendimiento , Difusión de la Información , Neoplasias , Medicina de Precisión , Humanos , Neoplasias/genética , Neoplasias/tratamiento farmacológico , Niño , Medicina de Precisión/métodos , Masculino , Preescolar , Femenino , Secuenciación de Nucleótidos de Alto Rendimiento/métodos , Adolescente , Lactante , Mutación , Ensayos Clínicos como Asunto , Terapia Molecular Dirigida/métodos , Genómica/métodos , Recién NacidoRESUMEN
BACKGROUND: Sharing trial results with participants is a moral imperative, but too often does not happen in appropriate ways. METHODS: We carried out semi-structured interviews with patients (n = 13) and site staff (n = 11), and surveyed 180 patients and 68 site staff who were part of the Show RESPECT study, which tested approaches to sharing results with participants in the context of the ICON8 ovarian cancer trial (ISRCTN10356387). Qualitative and free-text data were analysed thematically, and findings used to develop the SHOW RESPECT adaptable framework of considerations for planning how to share trial results with participants. This paper presents the framework, with illustrations drawn from the Show RESPECT study. RESULTS: Our adaptable 'SHOW RESPECT' framework covers (1) Supporting and preparing trial participants to receive results, (2) HOw will the results reach participants?, (3) Who are the trial participants?, (4) REsults-what do they show?, (5) Special considerations, (6) Provider-who will share results with participants?, (7) Expertise and resources, (8) Communication tools and (9) Timing of sharing results. While the data upon which the framework is based come from a single trial, many of our findings are corroborated by findings from other studies in this area, supporting the transferability of our framework to trials beyond the UK ovarian cancer setting in which our work took place. CONCLUSIONS: This adaptable 'SHOW RESPECT' framework can guide researchers as they plan how to share aggregate trial results with participants. While our data are drawn from a single trial context, the findings from Show RESPECT illustrate how approaches to communication in a specific trial can influence patient and staff experiences of feedback of trial results. The framework generated from these findings can be adapted to fit different trial contexts and used by other researchers to plan the sharing of results with their own participants. TRIAL REGISTRATION: ISRCTN96189403. Registered on February 26, 2019. Show RESPECT was supported by the Medical Research Council (MC_UU_12023/24 and MC_UU_00004/08) and the NIHR CRN.
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Neoplasias Ováricas , Investigación Cualitativa , Humanos , Femenino , Neoplasias Ováricas/psicología , Entrevistas como Asunto , Sujetos de Investigación/psicología , Difusión de la Información , Actitud del Personal de Salud , Investigadores/psicología , Factores de Tiempo , Persona de Mediana Edad , Conocimientos, Actitudes y Práctica en SaludRESUMEN
BACKGROUND: There are significant gaps in research output and authorship in low- and middle-income countries. Research dissemination events have the potential to help bridge this gap through knowledge transfer, institutional collaboration, and stakeholder engagement. These events may also have an impact on both clinical service delivery and policy development. King Faisal Hospital Rwanda (KFH) is a tertiary-level teaching hospital located in Kigali, Rwanda. To strengthen its research dissemination, KFH conducted an inaugural Research Day (RD) to disseminate its research activities, recognize staff and student researchers at KFH, define a research agenda for the hospital, and promote a culture of research both at KFH and in Rwanda. METHODS: RD was coordinated by an interdisciplinary committee of clinical and non-clinical staff at KFH. Researchers were encouraged to disseminate their research across all disciplines. Abstracts were blind reviewed using a weighted rubric and ranked by overall score. Top researchers were also awarded and recognized for their work, and equity and inclusion was at the forefront of RD programming. RESULTS: RD had over 100 attendees from KFH and other public, private, and academic institutions. Forty-seven abstracts were submitted from the call for abstracts, with the highest proportion studying cancer (17.02%) and sexual and reproductive health (10.64%). Thirty-seven researchers submitted abstracts, and most of the principal investigators were medical doctors (35.14%), allied health professionals (27.03%), and nurses and midwives (16.22%). Furthermore, 30% of principal investigators were female, with the highest proportion of them being nurses and midwives (36.36%). CONCLUSION: RD is an effective way to disseminate research in a hospital setting. RD has the potential to strengthen the institution's research agenda, engage the community in ongoing projects, and provide content-area support to researchers. Equity and inclusion should be at the forefront of research dissemination, including gender equity, authorship representation, and the inclusion of interdisciplinary health professionals. Stakeholder engagement can also be utilized to strengthen institutional research collaboration for greater impact.
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Hospitales de Enseñanza , Rwanda , Humanos , Difusión de la Información , Femenino , Investigación Biomédica , Centros de Atención Terciaria , Masculino , Cultura OrganizacionalRESUMEN
BACKGROUND: Breast cancer-related lymphedema in the upper limb remains one of the most distressful complications of breast cancer treatment. YouTube is considered a potential digital resource for population health and decision making. However, access to inadequate information or misinformation could have undesirable impacts. This cross-sectional study aimed to evaluate the reliability, quality and content of YouTube videos on lymphedema as an information source for Spanish-speaking breast cancer survivors. METHODS: A search of YouTube was conducted in January 2023 using the key words "breast cancer lymphedema" and "lymphedema arm breast cancer." Reliability and quality of the videos were evaluated using the Discern tool, content, source of production, number of likes, comments, views, duration, Video Power Index, likes ratio, view ratio and age on the platform. RESULTS: Amongst the 300 Spanish language videos identified on YouTube, 35 were selected for analysis based on the inclusion and exclusion criteria. Of the 35 selected videos, 82.9% (n = 29) were developed by healthcare or academic professionals and 17.1% (n = 9) by others. Reliability (p < 0.017) and quality (p < 0.03) were higher in the videos made by professionals. The Discern total score (r = 0.476; p = 0.004), reliability (r = 0.472; p = 0.004) and quality (r = 0.469; p = 0.004) were positively correlated with the duration of the videos. CONCLUSIONS: Our findings provide a strong rationale for educating breast cancer survivors seeking lymphedema information to select videos made by healthcare or academic professionals. Standardised evaluation prior to video publication is needed to ensure that the end-users receive accurate and quality information from YouTube.
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Neoplasias de la Mama , Supervivientes de Cáncer , Medios de Comunicación Sociales , Grabación en Video , Humanos , Estudios Transversales , Femenino , Neoplasias de la Mama/complicaciones , Reproducibilidad de los Resultados , Linfedema/etiología , Información de Salud al Consumidor/normas , Información de Salud al Consumidor/métodos , Persona de Mediana Edad , Difusión de la Información/métodos , Adulto , Fuentes de InformaciónRESUMEN
Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.
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Difusión de la Información , Cuidados Paliativos , Investigación Cualitativa , Humanos , Estados Unidos , Investigación Biomédica , Bases de Datos FactualesRESUMEN
Biomedical data are generated and collected from various sources, including medical imaging, laboratory tests and genome sequencing. Sharing these data for research can help address unmet health needs, contribute to scientific breakthroughs, accelerate the development of more effective treatments and inform public health policy. Due to the potential sensitivity of such data, however, privacy concerns have led to policies that restrict data sharing. In addition, sharing sensitive data requires a secure and robust infrastructure with appropriate storage solutions. Here, we examine and compare the centralized and federated data sharing models through the prism of five large-scale and real-world use cases of strategic significance within the European data sharing landscape: the French Health Data Hub, the BBMRI-ERIC Colorectal Cancer Cohort, the federated European Genome-phenome Archive, the Observational Medical Outcomes Partnership/OHDSI network and the EBRAINS Medical Informatics Platform. Our analysis indicates that centralized models facilitate data linkage, harmonization and interoperability, while federated models facilitate scaling up and legal compliance, as the data typically reside on the data generator's premises, allowing for better control of how data are shared. This comparative study thus offers guidance on the selection of the most appropriate sharing strategy for sensitive datasets and provides key insights for informed decision-making in data sharing efforts.
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Disciplinas de las Ciencias Biológicas , Difusión de la Información , Humanos , Informática Médica/métodosRESUMEN
OBJECTIVE: To investigate whether the surgical process information sharing system could alleviate the parental anxiety during a pediatric selective operation. DESIGN: Randomized controlled trial. METHODS: A questionnaire survey was conducted one day before surgery for the enrolled participants. Family members assigned to the intervention group received real-time process information sharing through service reminders during the surgical period, while the control group received standard perioperative education. The Pittsburgh Sleep Quality Index (PSQI) was used to evaluate sleep quality during the perioperative period, and the State of Cohesion-13 Scale (SOC-13) and Self-rating Anxiety Scale (SAS) were used to assess anxiety levels. Satisfaction levels during the perioperative period were assessed through a follow-up survey conducted one day after surgery. RESULTS: The intervention group showed better scores in terms of PSQI, SOC-13, SAS, and postoperative satisfaction levels at various time points compared to the control group, with statistically significant differences observed (P < 0.05). CONCLUSION: Real-time process information sharing is effective in reducing perioperative sleep disorders and anxiety among family members of pediatric patients, as well as improving satisfaction levels. This approach not only establishes a process and mechanism for effective doctor-patient communication but also helps implement continuous perioperative care, thereby optimizing internet healthcare services.
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Ansiedad , Procedimientos Quirúrgicos Electivos , Humanos , Masculino , Femenino , Procedimientos Quirúrgicos Electivos/psicología , Ansiedad/prevención & control , Niño , Difusión de la Información/métodos , Encuestas y Cuestionarios , Adulto , Preescolar , Padres/psicología , Calidad del Sueño , Satisfacción del Paciente , Familia/psicología , Periodo PerioperatorioRESUMEN
Data is the cornerstone of using AI models, because their performance directly depends on the diversity, quantity, and quality of the data used for training. Using AI presents unique potential, particularly in medical applications that involve rich data such as ophthalmology, encompassing a variety of imaging methods, medical records, and eye-tracking data. However, sharing medical data comes with challenges because of regulatory issues and privacy concerns. This review explores traditional and nontraditional data sharing methods in medicine, focusing on previous works in ophthalmology. Traditional methods involve direct data transfer, whereas newer approaches prioritize security and privacy by sharing derived datasets, creating secure research environments, or using model-to-data strategies. We examine each method's mechanisms, variations, recent applications in ophthalmology, and their respective advantages and disadvantages. By empowering medical researchers with insights into data sharing methods and considerations, this review aims to assist informed decision-making while upholding ethical standards and patient privacy in medical AI development.
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Inteligencia Artificial , Difusión de la Información , Oftalmología , HumanosRESUMEN
Increased use of whole genome sequencing (WGS) in neuro-oncology for diagnostics and research purposes necessitates a renewed conversation about informed consent procedures and governance structures for sharing personal health data. There is currently no consensus on how to obtain informed consent for WGS in this population. In this narrative review, we analyze the formats and contents of frameworks suggested in literature for WGS in oncology and assess their benefits and limitations. We discuss applicability, specific challenges, and legal context for patients with (recurrent) glioblastoma. This population is characterized by the rarity of the disease, extremely limited prognosis, and the correlation of the stage of the disease with cognitive abilities. Since this has implications for the informed consent procedure for WGS, we suggest that the content of informed consent should be tailor-made for (recurrent) glioblastoma patients.
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Neoplasias Encefálicas , Glioblastoma , Difusión de la Información , Consentimiento Informado , Secuenciación Completa del Genoma , Humanos , Glioblastoma/genética , Neoplasias Encefálicas/genética , Difusión de la Información/métodos , Recurrencia Local de Neoplasia/genéticaRESUMEN
BACKGROUND: YouTube, a widely recognized global video platform, is inaccessible in China, whereas Bilibili and TikTok are popular platforms for long and short videos, respectively. There are many videos related to laryngeal carcinoma on these platforms. This study aims to identify upload sources, contents, and feature information of these videos on YouTube, Bilibili, and TikTok, and further evaluate the video quality. METHODS: On January 1, 2024, we searched the top 100 videos by default sort order (300 videos in total) with the terms "laryngeal carcinoma" and "throat cancer" on YouTube, "" on Bilibili and TikTok. Videos were screened for relevance and similarity. Video characteristics were documented, and quality was assessed by using the Patient Education Materials Assessment Tool (PEMAT), Video Information and Quality Index (VIQI), Global Quality Score (GQS), and modified DISCERN (mDISCERN). RESULTS: The analysis included 99 YouTube videos, 76 from Bilibili, and 73 from TikTok. Median video lengths were 193 s (YouTube), 136 s (Bilibili), and 42 s (TikTok). TikTok videos demonstrated higher audience interaction. Bilibili had the lowest ratio of original contents (69.7%). Treatment was the most popular topic on YouTube and Bilibili, while that was the prognosis on TikTok. Solo narration was the most common video style across all platforms. Video uploaders were predominantly non-profit organizations (YouTube), self-media (Bilibili), and doctors (TikTok), with TikTok authors having the highest certification rate (83.3%). Video quality, assessed using PEMAT, VIQI, GQS, and mDISCERN, varied across platforms, with YouTube generally showing the highest scores. Videos from professional authors performed better than videos from non-professionals based on the GQS and mDISCERN scores. Spearman correlation analysis showed no strong relationships between the video quality and the audience interaction. CONCLUSIONS: Videos on social media platforms can help the public learn about the knowledge of laryngeal cancer to some extent. TikTok achieves the best flow, but videos on YouTube are of the best quality. However, the video quality across all platforms still needs enhancement. We need more professional uploaders to ameliorate the video quality related to laryngeal carcinoma. Content creators also should be aware of the certification, the originality, and the style of video shooting. As for the platforms, refining the algorithm will allow users to receive more high-quality videos.
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Neoplasias Laríngeas , Medios de Comunicación Sociales , Grabación en Video , Humanos , Medios de Comunicación Sociales/estadística & datos numéricos , Estudios Transversales , China , Difusión de la Información/métodos , Información de Salud al Consumidor/normasRESUMEN
Neste artigo, analisamos as temáticas, os posicionamentos, as formas expressivas, os atores legitimados e os recursos visuais e sonoros empregados na produção de 482 vídeos sobre vacinas, publicados de 2020 a 2022 na plataforma de vídeos curtos Kwai. A partir de análise temática e de análise de conteúdo, identificamos que os vídeos apresentaram, em sua maioria, posicionamento favorável ou neutro em relação às vacinas e que ressaltaram as experiências pessoais com a vacinação. Não obstante, utilizaram sobretudo um tom hu-morístico no tratamento do assunto, com potencial desinformativo quanto aos efeitos colaterais das vacinas. Concluímos assim que, por um lado, o Kwai tem sido utilizado para expressão de experiências positivas com a vacinação, que podem estimular a adesão aos imunizantes, mas, por outro, tem sido também espaço para a circulação de percepções negativas e temores que podem suscitar dúvidas quanto à segurança das vacinas.
In this article, we analyze the themes, positions, expressive forms, legitimized actors, and both visual and sound resources used in the production of 482 videos about vaccines, published from 2020 to 2022 on the short video platform Kwai. Based on thematic analysis and content analysis, we identified that the videos predominantly presented a favorable or neutral stance toward vaccines and that they highlighted personal experiences with immunization. However, they mainly used a humorous tone when dealing with the subject, thereby potentially disseminating misinformation regarding the adverse effects of vaccines. We thus conclude that, on the one hand, Kwai has been used to express positive experiences with vaccination, which can stimulate adherence to vaccinations, but, on the other hand, it has also been a space for the circulation of negative perceptions and fears that can raise doubts regarding the safety of vaccines.
En este artículo, analizamos los temas, posiciones, formas expresivas, actores legitimados y recursos visuales y sonoros utilizados en la producción de 482 videos sobre vacunas publicados de 2020 a 2022 en la plataforma de videos cortos Kwai. A partir del análisis temático y de contenido, identificamos que los videos presentaban, en su mayoría, una posición favorable o neutral con relación a las vacunas y que destacaban experiencias per-sonales con la vacunación. Sin embargo, al abordar el tema, utilizaron, principalmente, un tono humorístico, con potencial desinformativo sobre los efectos secundarios de las vacunas. De ese modo, concluimos que, por un lado, el Kwai tiene sido utilizado para expresar experiencias positivas con la vacunación que pueden estimular la adhesión a las vacunas, pero, por otro lado, también tiene sido un espacio para la circulación de percepciones negativas y miedos que pueden plantear dudas sobre la seguridad de las vacunas.
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Vacunas , Difusión de la Información , Redes Sociales en Línea , COVID-19 , Desinformación , Brasil , Inmunización , Seguridad Computacional , Comunicación , Difusión por la Web como Asunto , Difusión por la Web , Red Social , Análisis de Redes SocialesRESUMEN
Investigar e analisar as evidências disponíveis na literatura sobre o uso do Facebook com os pais de recém--nascidos. Trata-se de uma revisão integrativa, realizada no segundo semestre de 2020, nas bases de dados Lilacs (Literatura Latino-Americana e do Caribe em Ciências da Saúde), SciELO (Scientific Electronic Li-brary Online) e Medline (Medical Literature Analysis and Retrieval System Online). Amostra composta por 11 artigos, divididos em duas categorias. Foi evidenciado o uso do Facebook como forma de recrutamento de participantes e como suporte de apoio e compartilhamento de informações entre os pais dos recém--nascidos. No recrutamento, a utilização do Facebook foi eficaz, podendo ser um método viável de contatar usuários. Como suporte de apoio e compartilhamento de informações, a rede social também foi efetiva, devido à troca de experiência, apoio mútuo entre os usuários, disseminação de informações, facilidade ao usar a plataforma e alto engajamento dos participantes.
To investigate and analyze the evidence available in the literature on the use of Facebook with parents of newborns. This is an integrative review, carried out in the second half of 2020, in the Lilacs databases (Literatura Latino-Americana e do Caribe em Health Sciences), SciELO (Scientific Electronic Library Online) and Medline (Medical Literature Analysis and Retrieval System Online). Sample composed of eleven articles, divided into two categories. The use of Facebook was evidenced as a way of recruiting participants and as support and information sharing between parents of newborns. In recruitment, the use of Facebook was effective and may be a viable method of contacting users. As support and information sharing, the social network was also effective, due to the exchange of experience, mutual support among users, dissemination of information, ease of use of the platform and the high engagement of participants.
Investigar y analizar la evidencia disponible en la literatura sobre el uso de Facebook con padres de recién nacidos, se trata de una revisión integradora, realizada en el segundo semestre de 2020, en las bases de datos Lilacs (Literatura Latino-Americana e do Caribe em Health Sciences ), SciELO (Biblioteca científica electrónica en línea) y Medline (Sistema de recuperación y análisis de literatura médica en línea). Muestra compuesta por once artículos, divididos en dos categorías. Se evidenció el uso de Facebook como forma de captación de participantes y como apoyo e intercambio de información entre padres de recién nacidos. En la contratación, el uso de Facebook fue efectivo y puede ser un método viable para contactar a los usuarios. Como apoyo e intercambio de información, la red social también resultó eficaz, debido al intercambio de experiencias, el apoyo mutuo entre los usuarios, la difusión de información, la facilidad de uso de la plata-forma y el alto compromiso de los participantes.
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Relaciones Padres-Hijo , Recién Nacido , Difusión de la Información , Relaciones Investigador-Sujeto , Redes Sociales en Línea , Padres , Servicios de Salud del Niño , Rol de la Enfermera , Acceso a InternetRESUMEN
O texto discorre sobre relações entre a Ciência da Informação e o movimento da Ciência Aberta, sob a ótica de artigos científicos identificados na Base de Dados Referenciais de Artigos de Periódicos em Ciência da Informação. Objetiva determinar dimensões, campos e movimentos que se relacionam, estabelecendo um panorama dessa relação com as pesquisas brasileiras no período entre 2015 e 2019 no domínio da comunicação científica. A metodologia é a revisão narrativa de literatura, por meio da aplicação da análise de títulos, resumos e palavras-chave dos artigos selecionados. O campo empírico é composto pelos resultados obtidos pela busca na base, totalizando 36 resultados. Conclui-se que a Ciência da Informação está se relacionando com a Ciência Aberta, observando-se a prevalência de estudos sobre temáticas de dados de pesquisa abertos e sobre repositórios, de acordo com o período observado, como maneiras de aperfeiçoar os fazeres científicos.
The text discusses the relationship between Information Science and the Open Science movement, from the perspective of scientific articles identified in the Referential Database of Journal Articles in Information Science. The objective is to determine the dimensions, fields, and movements related, establishing an overview of this relationship with Brazilian research between 2015 and 2019, in the domain of scientific communication. The methodology employed is the narrative literature review, through the analysis of titles, abstracts, and keywords of selected articles. The empirical field consists of the results obtained through the search in the database, totaling 36 results. It is concluded that Information Science is relating to Open Science, with a prevalence of studies on open research data and repositories, according to the observed period, as ways to enhance scientific practices.
El texto discute la relación entre la Ciencia de la Información y el movimiento de la Ciencia Abierta, desde la perspectiva de artículos científicos identificados en la Base de Datos Referencial de Artículos de Revistas en Ciencia de la Información. El objetivo es determinar dimensiones, campos y movimientos relacionados, estableciendo una visión general de esta relación con la investigación brasileña entre 2015 y 2019, en el ámbito de la comunicación científica. La metodología es la revisión narrativa de literatura, a través del análisis de títulos, resúmenes y palabras clave de artículos seleccionados. El campo empírico consiste en los resultados obtenidos mediante la búsqueda en la base de datos, con 36 resultados. Se concluye que la Ciencia de la Información se relaciona con la Ciencia Abierta, con una prevalencia de estudios sobre datos de investigación abiertos y repositorios, según el período observado, como formas de mejorar las prácticas científicas.
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Ciencia de la Información , Base de Datos , Acceso a la Información , Comunicación y Divulgación Científica , Periódicos como Asunto , Bases de Datos como Asunto , Publicación Periódica , Difusión de la Información , Ciencia de los DatosRESUMEN
AIM: Previous research has shown patients and the public in Australia generally support medical researchers in making de-identified research data available to other scientists. However, this research has focussed on certain types of data and recipients. We surveyed Australians affected by cancer to characterize their attitudes toward the sharing of research data with multiple third parties, including the public. METHODS: A short, anonymous online survey of Australians with a previous diagnosis of cancer was advertised between October 27, 2022, and February 27, 2023. Quantitative responses were analyzed with descriptive statistics. Free-text responses were coded deductively and summarised using content analysis. RESULTS: In total, 551 respondents contributed data to the survey. There was strong support for cancer researchers sharing non-human and de-identified human research data with clinicians (90% and 95%, respectively) and non-profit researchers (both 94%). However, fewer participants supported sharing data with for-profit researchers (both 64%) or publicly (both 61%). When asked if they would hypothetically consent to researchers at their treatment location using and sharing their de-identified data publicly, only half agreed. In contrast, after being shown a visual representation of the de-identified survey data, 80% of respondents supported sharing it publicly. CONCLUSION: Australians affected by cancer support the sharing of research data, particularly with clinicians and non-profit researchers. Our results also imply that visualization of the data to be shared may enhance support for making it publicly available. These results should help alleviate any concerns about research participants' attitudes toward data sharing, as well as boost researchers' motivation for sharing.