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1.
Cureus ; 16(5): e61152, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38803408

RESUMO

STUDY DESIGN: This was a descriptive study through secondary analysis of aggregated data. PURPOSE: This study aimed to describe changes in women's membership in the Japanese Society for Spine Surgery and Related Research (JSSR) for orthopedic surgery and the Neurospinal Society of Japan (NSJ) for neurosurgery over the past decade and make predictions for the future. OVERVIEW OF LITERATURE: Although the ratio of women physicians in the field of spine surgery is known to be low worldwide, there is a lack of detailed surveys in Japan. METHODS: We sent emails to the JSSR and NSJ secretariats to verify membership information (gender and age) from 2013 to 2022. Using ordinary least squares, we projected the years it would take for the JSSR and NSJ to achieve a gender diversity ratio of 30%. RESULTS: In 2013, the percentage of women in JSSR and NSJ was 2.3% and 2.7%, respectively. However, after 2018, the percentage of women in NSJ will be higher than in JSSR, rising to 2.7% in JSSR and 4.7% in NSJ by 2022. It would require 101 years for the NSJ and more than 1,000 years for the JSSR to realize 30% gender diversity. CONCLUSIONS: JSSR and NSJ have low percentages of women. Improving gender diversity is an important issue for both societies, and they may collaborate on finding a good solution. Both the JSSR and NSJ societies need to actively address gender diversity and become more attractively represented in society for the next generation of spine surgeons.

2.
Oncologist ; 29(7): e887-e898, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38666716

RESUMO

BACKGROUND: Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating. MATERIALS AND METHODS: To understand patients' perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer. RESULTS: While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors' right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients' opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence. CONCLUSIONS: Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients' ethical and moral concerns related to donation and offer resources to help manage these concerns.


Assuntos
Bancos de Espécimes Biológicos , Consentimento Livre e Esclarecido , Neoplasias , Humanos , Masculino , Feminino , Polônia , Neoplasias/psicologia , Neoplasias/terapia , Pessoa de Meia-Idade , Bancos de Espécimes Biológicos/ética , Bancos de Espécimes Biológicos/legislação & jurisprudência , Consentimento Livre e Esclarecido/legislação & jurisprudência , Consentimento Livre e Esclarecido/ética , Adulto , Idoso , Inquéritos e Questionários , Percepção , Pesquisa Biomédica/ética , Pesquisa Biomédica/legislação & jurisprudência , Obtenção de Tecidos e Órgãos/ética , Obtenção de Tecidos e Órgãos/legislação & jurisprudência , Doadores de Tecidos/psicologia , Doadores de Tecidos/ética
3.
BMC Cancer ; 24(1): 390, 2024 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-38539134

RESUMO

BACKGROUND: Since the biological material that remains after diagnostic and therapeutic procedures plays crucial role in biobank research, this study aims to explore cancer patients' views on the donation of biospecimens for research purposes. METHODS: 548 oncology patients from two hospitals with oncology treatment units in Poznan, Poland, completed an anonymous, self-administered pen-and-paper questionnaire. RESULTS: Although only 43.4% of patients had heard of biobanks, 93.1% declared themselves willing to donate. 71.1% of patients believed that doctors should ask patients to donate, and 60.9% that this should be done before the medical procedure. While 65% of patients were willing to donate any type of tissue that remained after a medical procedure, blood, saliva and hair were indicated most frequently. 40.5% of patients would donate their entire body after death and 21% would refuse. Patients' support for biobanks was mainly driven by the desire to support science, help advance cancer research and altruism. Some respondents expected health information or medical treatment. The most common barriers for donation were physical distance, repeated examinations, concerns over the privacy and confidentiality of data and the commercial or unethical use of samples. Patients' attitudes toward biobank donation seemed to be associated with age, education level, declared religiousness, a family history of genetically determined diseases and whether they were a blood donor. CONCLUSIONS: Although cancer patients' lack of biobank awareness had no effect on their affirmative attitudes towards biobank research, there is a need to further increase patients' support and overcome possible barriers that might hinder their willingness to donate.


Assuntos
Neoplasias , Obtenção de Tecidos e Órgãos , Humanos , Bancos de Espécimes Biológicos , Conhecimentos, Atitudes e Prática em Saúde , Escolaridade , Inquéritos e Questionários
5.
Spine Surg Relat Res ; 8(1): 91-96, 2024 Jan 27.
Artigo em Inglês | MEDLINE | ID: mdl-38343404

RESUMO

Introduction: There are no reports that have examined the annual trends of the percentage of women who are members of the Japanese Society for Spine Surgery and Related Research (JSSR) or their roles at annual meetings. Furthermore, the status of gender diversity in the JSSR remains unclear. This study aims to identify gender diversity in the JSSR by quantifying the role of women at annual meetings over the past decade. Methods: We performed a retrospective review to explore gender role in the JSSR annual meeting by examining the meeting programs for 2013-2022. The gender ratios were surveyed each year for the following: (1) first authors of general application abstracts (oral and poster), (2) meeting guest speakers, (3) meeting moderators, and (4) program editors of the abstracts. We also investigated the availability of gender equality symposiums. Results: The percentage of women applying (1.1%-2.1%) and those who were invited as participants [guest speaker (0%-0.9%), moderator (0%-5.8%), and program editor (0%-0.6%)] at the annual JSSR meetings was low, with no significant increase over the past decade. In addition, there has never been a symposium promoting gender equality at the annual JSSR meeting. Conclusions: Our findings suggest that a strong and active role for institutional leaders and senior members to support the scholarly activities of women spine surgeons is important for adopting gender diversity in the JSSR academia. The absence of gender equality symposiums and the few invited women participants at the JSSR annual meeting may be due to a lack of gender diversity awareness among conference organizers or unconscious gender bias. Monitoring the role of women in the JSSR annual meetings may solve the gender diversity problem.

6.
Chinese Medical Ethics ; (6): 407-414, 2024.
Artigo em Chinês | WPRIM (Pacífico Ocidental) | ID: wpr-1012913

RESUMO

The frequent several ethical events in recent years suggested carry out the construction of ethical governance system involving human health-related research under the background of national governance. The subjects of ethical governance include the government, medical institutions, universities, scientific research institutes, enterprise, ethics committees, researchers, the public, etc., the multiple subjects are interrelated and interact with each other to restrict and standardize ethics through different governance tools. However, there are some problems in China’s ethical governance, such as the relative lag in the construction of ethical governance concept and system, insufficient multi-party participation, the difficulty in sole legislation to solve risk and ethical problems, the specification cannot be met, inadequate supervision, insufficient accountability for violations, researchers lack ethical awareness, ethical education lags behind and insufficient information disclosure to the public. It should be taken such as countermeasures as paying attention to the theoretical research of ethical governance system, strengthening the construction of ethical governance system, pluralistic co governance, agile governance, strengthening legislation, improving norms, implementing supervision, strengthening the construction of ethics committee, talent training, training researchers, ethical education, popular science public, academic self-discipline, information disclosure and public participation, so as to build a scientific and technological ethics governance system in line with China’s national conditions and in line with international standards, and contribute China’s wisdom for world ethical governance.

7.
Rev. bioét. derecho ; (58): 109-127, Jul. 2023.
Artigo em Espanhol | IBECS | ID: ibc-222831

RESUMO

En la última década, el Paraguay ha presentado avances en el desarrollo de la investigación relacionada con la salud con seres humanos.Sin embargo, existe una obligación estatal de asegurar que las investigaciones sean realizadas éticamente: protegiendo la dignidad, los derechos y el bienestar de los participantes, la integridad científica y la adherencia a pautas éticas locales e internacionales. Los comités de ética de la investigación institucionales constituyen la instancia o recurso principal para garantizar la mencionada obligación. Ante lo expuesto y el contexto carente de adecuada regulación en el cual actualmente se desarrollan las investigaciones en el país, en el presente artículo defenderemos el imperativo ético de establecer un sistema de acreditación de los comités de ética de la investigación. Para ello, expondremos y justificaremos su necesidad y buscaremos responder algunas objeciones relativas al imperativo ético defendido, como, por ejemplo, el valor per se de la acreditación de los comités de ética en investigación en la protección de los participantes, la inversión de tiempo y burocracia que implican los procesos de acreditación y el marco regulatorio incipiente para las investigaciones en seres humanos en el Paraguay. Finalmente, propondremos el fortalecimiento de la gobernanza de la ética de la investigación en el país, como medio principal para establecer, implementar y supervisar un sistema de acreditación de los comités de ética de la investigación.(AU)


A l'última dècada, el Paraguai ha presentat avençosen el desenvolupament de la recerca relacionada amb la salut amb éssers humans. Tot i això, hi ha una obligació estatal d'assegurar que les investigacions siguin realitzades èticament: protegint la dignitat, els drets i el benestar dels participants, la integritat científica i l'adherència a pautes ètiques locals i internacionals. Els comitès d'ètica de la investigació institucionals constitueixen la instància o el recurs principal per garantir l'obligació esmentada. Davant del que s'ha exposat i el context sense regulació adequada en el qual actualment es desenvolupen les investigacions al país, en aquest article defensarem l'imperatiu ètic d'establir un sistema d'acreditació dels comitès d'ètica de la investigació. Per això, exposarem i justificarem la seva necessitat i buscarem respondre algunes objeccions relatives a l'imperatiu ètic defensat, com, per exemple, el valor perseguit de l'acreditació dels comitès d'ètica en recerca en la protecció dels participants, la inversió de temps i burocràcia que impliquen els processos d'acreditació i el marc regulador incipient per a les investigacions en éssers humans al Paraguai. Finalment, proposarem l'enfortiment de la governança de l'ètica de la investigació al país com a mitjà principal per establir, implementar i supervisar un sistema d'acreditació dels comitès d'ètica de la investigació.(AU)


In the last decade, Paraguay has made progress in the development of health-related research involving human subjects. This entails the obligation of the State to ensure that research is conducted ethically: protecting the dignity, rights and welfare of the participants, scientific integrity and adherence to international ethical guidelines. Research Ethics Committees are the main instance or resource to guarantee the aforementioned obligation. In view of the above and the context lacking adequate regulation in which research is currently carried out in the country, this article will defend the ethical imperative of establishing an accreditation system for research ethics committees. To this end, its necessity will be presented and justified and some objections related to the ethical imperative defended will be answered, such as the per se value of the accreditation of research ethics committees in the protection of participants, the investment of time and bureaucracy involved in the accreditation processes and the incipient regulatory framework for research on human beings in Paraguay. Finally, it will be proposed to strengthen the governance of research ethics in the country, as the main means to establish, implement and supervise an accreditation system for research ethics committees.(AU)


Assuntos
Humanos , Comitês de Ética em Pesquisa , Humanos , Temas Bioéticos , Pesquisa Científica e Desenvolvimento Tecnológico , Paraguai , Bioética , Pesquisa
8.
Sci Total Environ ; 866: 161314, 2023 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-36603628

RESUMO

Greenhouse gas (GHG) concentrations have continued to increase in the atmosphere and unequivocally warmed the climate system, and human activities contribute significantly to the growth impact. Various research puzzles and potential mitigation evidence involving GHG related research (GRR) need to be explored and deciphered from large-scale literature records to provide a whole picture and clear scientific view on the current state of GRR to promoting action on climate change. By combining Bibexcel-based bibliometrics with Pajek's social network analysis, we explore the literature statistics and interdisciplinary characteristics of GRR, and identify frequently debated topics in interdisciplinary by going deep into the texts of those classical literature. We found the trend of GRR's publications in the Environmental/Ecology group increased exponentially with an annual growth rate of 47.3 % and continue to expand in 13 subject categories. There are four types of relationships in the author cooperation, which gradually promote the cross-study of GHG in different subject categories, and the regional cooperation relations are relatively stable involving North America, Asia, Europe, Oceania, and South America. Those classical literature are widely distributed in six interdisciplinary categories, specifically 'Agronomy, Forestry and Zoology', 'Biodiversity Conservation and Ecology', 'Engineering, Environmental and Green & Sustainable Science & Technology', 'Geography and Remote Sensing', 'Limnology, Marine & Freshwater Biology and Water Resources', and 'Public, Environmental & Occupational Health'.

9.
AIDS Res Hum Retroviruses ; 39(8): 400-413, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-35972752

RESUMO

Most HIV cure studies remain in the early stage of investigation and may carry clinical risks to the participants and, in some cases, their partners. Surprisingly little sociobehavioral research has investigated the perceptions of couples-including HIV serodifferent couples-around HIV cure research, including factors that would influence recruitment and retention in trials. We conducted a qualitative study to explore perceptions of diverse HIV serodifferent partners in the United States. We recruited 10 diverse HIV serodifferent couples (20 participants). We found participants had learned to cope with the reality of HIV, including protections during sex, and ascribed both positive and negative meanings to an HIV cure. Partners expressed concern about each other's health and potentially caring for a sick partner and emphasized the importance of safety when participating in an HIV cure trial. They identified the need for partner protection measures during analytical treatment interruptions (ATIs) as an ethical imperative. Participants recounted experiences of HIV stigma due to being in HIV serodifferent relationships and viewed ATIs as leading to a detectable viral load, which could limit sexual expression, complicate disclosure decision making, and worsen HIV-related stigma. Our study's main contribution is to inform efforts to meaningfully engage diverse HIV serodifferent partners in HIV cure research in the United States. Our data suggest people with HIV make decisions to participate in research based on close ones in their life and underscore the critical importance of acknowledging relationship dynamics in decisions to participate in research.


Assuntos
Fármacos Anti-HIV , Infecções por HIV , Soropositividade para HIV , Humanos , Estados Unidos , Infecções por HIV/tratamento farmacológico , Infecções por HIV/prevenção & controle , Soropositividade para HIV/tratamento farmacológico , Parceiros Sexuais , Fármacos Anti-HIV/uso terapêutico , Comportamento Sexual
10.
Iran J Public Health ; 52(12): 2673-2685, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38435781

RESUMO

Background: Recent evidence provides the facts behind the perceptions about women researchers participating in health research (HR). Women scientists as almost half of active researchers in HR fields have important and fundamental role. The present study aimed to analyses the situation of women participation in HR of Iran. Methods: The present study comprised three complementary phases intended to identify and analysis challenges and problems of women participation in health research in Iran (2021-22). Following a review phase, using the content analysis approach through semi-structured interviews data gathered from key stakeholders of health research. At final step, aimed to aggregate and conclude the main key findings, through an expert panel all of the results analyzed to clarify the main messages of the study, focus on reflection to the target group. Results: The results reveal considerable gender differences in research contribution between Iranian men and women. The need for legal infrastructure and support for the active participation of women in HR was the main extracted point of study. The need for transparent documentation and implementation of related research that demonstrates the necessary challenges and gaps was another major point. Conclusion: Findings may help illuminate policy makings to promote participation of women in the country research. The optimal management of HR require facilities can play an important role in improving the quality and quantity of health studies and achieving scientific competitive positions at the regional and global levels.

11.
Res Involv Engagem ; 8(1): 43, 2022 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-36028911

RESUMO

BACKGROUND: Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project. METHODS: This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects. RESULTS: The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods. CONCLUSION: The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.


More and more patients are taking part in research as patient partners. However, researchers have little guidance on how to bring patient partners into research studies and at what levels. There are many ways to do this. It can be hard to choose the way most appropriate for a specific project, especially for newer researchers. We (11 researchers at different career levels) developed guidance through six workshops to help new researchers choosing the way to engage patient partners most appropriate for their project. The guidance resulted in two different resources. Resource I gives five international approaches for bringing patient partners into research. Resource II describes methods for engaging patient partners at different levels. Fourteen researchers and five PhD students tested the guidance and scored how usable it is. It had excellent usability. The two resources did help researchers to decide on the best ways to engage patient partners in research. We now need to test how the guidance can be used to talk to patients about taking part in specific research projects.

12.
HIV Res Clin Pract ; 23(1): 61-75, 2022 07 18.
Artigo em Inglês | MEDLINE | ID: mdl-35904107

RESUMO

Background: Research on stakeholder perspectives of HIV cure research has involved people with HIV (PWH), who generally cite the importance of HIV clinician advice in making decisions about trial participation. However, there has been little exploration of non-researcher community HIV clinician perspectives, which are clearly critical to the success of HIV cure-related research.Objective: We aimed to learn how community HIV clinicians perceive HIV cure research and identify factors that would lead them to support or discourage HIV cure trial participation by their patients.Methods: We recruited a purposive sample of 12 community HIV clinicians in metro-Seattle, WA to participate in structured interviews. We completed 11 interviews via teleconference and received one written response. We used conventional content analysis to analyze the data.Results: Overall, community HIV clinicians were supportive of patient participation in HIV cure trials. Factors affecting support included knowledge of local trials, ease of referral, patient immune function and health stability, study risks and benefits, burden of study requirements, patient characteristics, patient life stability, potential impact on engagement in care, study communication plans, and beliefs that patients should have the autonomy to decide to participate. Participants had concerns about trials requiring treatment delays or interruptions and HIV transmission risk. While their knowledge of the field was limited, they were interested in learning more about open HIV cure trials.Conclusions: It would benefit the HIV cure research community if those leading HIV cure trials make stronger efforts to engage community clinicians who care for PWH, but are not active researchers, early in the trial design process. Such engagement prior to launching HIV cure trials will improve trial designs, leading to better enrollment and retention within these important studies.


Assuntos
Infecções por HIV , Infecções por HIV/tratamento farmacológico , Humanos , Noroeste dos Estados Unidos , Pesquisadores , Tempo para o Tratamento
13.
BMC Med Ethics ; 23(1): 51, 2022 05 14.
Artigo em Inglês | MEDLINE | ID: mdl-35568960

RESUMO

INTRODUCTION: Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first author lives and works, as a case study. METHODS: Discourse analysis was conducted on 34 international ethics guidelines and policy documents. Documents were purposively selected if they contained a set of key terms that reflect the concept of ancillary care. Following a process of inductive discourse analysis, five key interrelated text phrases relating to ancillary care were extracted from the documents. The evolution of these phrases over time was explored as they represented the development of the concept of ancillary care as a component of ethical health research guidance and practice. RESULTS: We found key interrelated phrases that represent discourses regarding the evolution of ancillary care including participant protection; provide care as appropriate; supererogation; patient needs prevail over science; and ancillary care as an obligation. Arguments for the provision of ancillary care were characterised by safeguarding the safety, health rights and well-being of study participants. However, despite the evolution of discourse around ethical obligations to provide ancillary care, this is rarely made explicit within guidance documents, leaving interpretive space for differential application in practice. CONCLUSION: While there have been major changes to the ethics guidance that reflect significant evolution in the ethical conduct of research, the specific vocabulary or language used to explain the ethics of researchers' ancillary care obligations to the health needs of their research participants, lacks clarity and consistency. As a result, the concept of ancillary care continues to be under-represented in local ethical guidelines and regulations, with no clear directives for country-level research ethics committees to apply in regulating ancillary care responsibilities.


Assuntos
Ética em Pesquisa , Acessibilidade aos Serviços de Saúde , Comitês de Ética em Pesquisa , Direitos Humanos , Humanos , Pesquisadores
14.
Nagoya J Med Sci ; 84(1): 155-162, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35392003

RESUMO

The purpose of this study is to examine trends in spine surgeries at ten facilities over 15 years, and to analyze relationships with the number of spine surgeons at these facilities. The subjects were patients who underwent spine surgery at the ten facilities from 2003 to 2017. Data were collected every year via a questionnaire designed to obtain clinicopathological and surgical information. There were 37,601 spine surgeries (60.2% male) recorded in the registry at 9 facilities in the Nagoya Spine Group (NSG) between 2003 and 2017, with an increase in the annual number of surgeries by 2.4 times over 15 years. On the other hand, the number of spine surgeons has increased by just under 1.5 times. Instrumentation surgeries increased from 959 in 2003 to 2,276 in 2017 (2.3 times). There was a particularly marked increase in surgeries for spinal degenerative disease from 1,075 in 2003 to 2,821 in 2017 (2.6 times). The number of surgeries performed per surgeon increased from 61.4 in 2003 to 102.8 in 2017, while the average number of spine surgeons per hospital increased from 2.6 in 2003 to 3.7 in 2017. In conclusion, with heavier burden on spine surgeons and the major changes in the spine surgery environment, training and increasing surgeons with advanced expertise and skills will become increasingly important.


Assuntos
Coluna Vertebral , Cirurgiões , Feminino , Humanos , Masculino , Coluna Vertebral/cirurgia , Inquéritos e Questionários
15.
Technol Forecast Soc Change ; 175: 121344, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34782813

RESUMO

The outbreak of coronavirus disease 2019 (COVID-19) has had a significant repercussion on the health, economy, politics and environment, making coronavirus-related issues more complicated and difficult to adequately address by relying on a single field. Interdisciplinary research can provide an effective solution to complex issues in the related field of coronavirus. However, whether coronavirus-related research becomes more interdisciplinary still needs corroboration. In this study, we investigate interdisciplinary status of the coronavirus-related fields via the COVID-19 Open Research Dataset (CORD-19). To this end, we calculate bibliometric indicators of interdisciplinarity and apply a co-occurrence analysis method. The results show that co-occurrence relationships between cited disciplines have evolved dynamically over time. The two types of co-occurrence relationships, Immunology and Microbiology & Medicine and Chemical Engineering & Chemistry, last for a long time in this field during 1990-2020. Moreover, the number of disciplines cited by coronavirus-related research increases, whereas the distribution of disciplines is uneven, and this field tends to focus on several dominant disciplines such as Medicine, Immunology and Microbiology, Biochemistry, Genetics and Molecular Biology. We also measure the disciplinary diversity of COVID-19 related papers published from January to December 2020; the disciplinary variety shows an upward trend, while the degree of disciplinary balance shows a downward trend. Meanwhile, the comprehensive index 2Ds demonstrates that the degree of interdisciplinarity in coronavirus field decreases between 1990 and 2019, but it increases in 2020. The results help to map the interdisciplinarity of coronavirus-related research, gaining insight into the degree and history of interdisciplinary cooperation.

16.
J Particip Med ; 13(3): e30062, 2021 Nov 19.
Artigo em Inglês | MEDLINE | ID: mdl-34797214

RESUMO

BACKGROUND: The exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes. OBJECTIVE: The objectives of this scoping review were to examine studies that used health information technology for community engagement and to assess (1) the types of populations, (2) community engagement strategies, (3) types of health information technology tools, and (4) outcomes of interest. METHODS: We searched PubMed and PCORI Literature Explorer using terms related to health information technology, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 papers for screening. After inclusion and exclusion criteria were applied, a total of 37 papers were analyzed for key themes and for approaches relevant to health information technology and community engagement research. RESULTS: This analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial or ethnic minority communities such as Black/African American, American Indian/Alaska Native, Latino ethnicity, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers to older adults. The studies were also geographically spread across the United States and the world. Community engagement strategies included collaborative development of health information technology tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of health information technology to engage communities in research (eg, through citizen science). The types of technology varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing health information technology tools and prototypes with participants, measuring knowledge, and advocating for community change. CONCLUSIONS: This study illustrates the current landscape at the intersection of health information technology tools and community-engaged research approaches. It highlights studies in which various community-engaged research approaches were used to design culturally centered health information technology tools, to promote health information technology uptake, or for engagement in health research and advocacy. Our findings can serve as a platform for generating future research upon which to expand the scope of health information technology tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of cocreating culturally centered health information technology tools and better knowledge to promote action and improve health outcomes.

17.
AIDS Res Hum Retroviruses ; 37(6): 489-501, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33472545

RESUMO

The AIDS Clinical Trials Group (ACTG) A5345 study included an intensively monitored antiretroviral pause (IMAP), during which a cohort of participants temporarily stopped antiretroviral treatment during chronic HIV infection. We surveyed participant perceptions and understanding of A5345 using a cross-sectional sociobehavioral questionnaire. Participants completed the baseline questionnaire either before or after initiating the study's IMAP. Questionnaire responses were linked to existing demographic data. Quantitative responses were analyzed overall and stratified by IMAP status. Open-ended responses were analyzed using conventional content analysis. Thirty-two participants completed the baseline sociobehavioral questionnaire. Half (n = 16) completed it before (i.e., pre-IMAP initiation group) and half (n = 16) after IMAP initiation (i.e., post-IMAP initiation group). Eight pre-IMAP initiation respondents (50%) and 11 post-IMAP respondents (69%) responded "yes" when asked if they perceived any direct benefits from participating in A5345. Perceived societal-level benefits included furthering HIV cure-related research and helping the HIV community. Perceived personal-level benefits included the opportunity to learn about the body's response to IMAP and financial compensation. The majority of respondents-13 from each group (81% of each)-reported risks from participation, for example, viral load becoming detectable. A5345 participants perceived both societal- and personal-level benefits of study participation. While the majority of survey respondents perceived participatory risks, nearly one in five did not. Key messages pertaining to study-related risks and benefits may need to be clarified or reiterated periodically throughout follow-up in HIV cure-related studies with IMAPs. Clinical Trail Registration Number: NCT03001128.


Assuntos
Síndrome da Imunodeficiência Adquirida , Infecções por HIV , Biomarcadores , Estudos Transversais , Infecções por HIV/tratamento farmacológico , Humanos , Carga Viral
18.
Aust Educ Res ; 48(4): 721-737, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33235403

RESUMO

Research is at the core of universities' raison d'être and is an integral aspect of academic work, yet the ever-changing parameters around research are problematic. While studies have examined changes brought about through research assessment exercises and issues of academic identity in the twenty-first century, fewer studies have used arts-related research methods to engage with academics' experiences of these changes. This article draws upon visual and textual material generated by academics at an Australian university to investigate how academic researchers engage with research in the current milieu. This research offers an aesthetic mode of interruption and resistance to consider the emotional labour, work and energy involved in doing research that cannot be captured through neoliberal research measurement discourses. It deploys a post-Foucauldian governmentality theoretical framework to illustrate the ways in which academics [re]position multiple selves constantly to build more robust and critical responses to higher education reform.

19.
J Virus Erad ; 6(2): 81-84, 2020 Apr 30.
Artigo em Inglês | MEDLINE | ID: mdl-32405426

RESUMO

This viewpoint article critiques two recent articles examining 'willingness to risk death' to advance HIV cure-related research. The 'willingness to risk death' endpoint sends the wrong signal to the HIV cure-related research community about ongoing research in otherwise healthy volunteers living with HIV. Socio-behavioural scientists have examined the acceptability of a 99% risk of death scenario, which is unrealistic and would not be acceptable by current regulatory and ethical standards. We believe that the field needs robust and relevant socio-behavioural research reflecting ongoing biomedical HIV cure-related trials. These studies will need to withstand regulatory and ethical scrutiny if cure or remission regimens are to proceed to the licensing stage. The HIV cure-related research community must continue to protect the public trust in the HIV cure-related research field and sustain societal value generated by such research. We call for the utmost prudence in designing biomedical HIV cure trials as well as in setting up socio-behavioural research experiments related to these complex trials.

20.
AIDS Res Hum Retroviruses ; 36(7): 606-615, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32368934

RESUMO

Two HIV virologic control advances are in various stages of development, including long-acting antiretroviral therapy (ART) formulations and strategies aimed at sustained ART-free HIV control. Perceptions of risks and benefits toward HIV virologic control strategies may be different based on an individual's age due to differing experiences of the impacts of the domestic HIV epidemic, altruistic attitudes toward research participation, and general levels of engagement in health care. We examined preferences of HIV virologic control strategies by age groups. In 2018, we conducted a nationwide, online cross-sectional survey to examine differences in HIV virologic control strategies among a sample of people living with HIV who were <50 and ≥50 years of age. From a total of 281 participants, 3 findings were noteworthy: (1) Participants <50 years of age were more likely to be demotivated by perceived social risks (e.g., stigma, discrimination, HIV disclosure, and fear of transmitting HIV during a treatment interruption), compared with those ≥50 years; (2) participants ≥50 years of age were more motivated by altruistic notions compared with those <50 years; and (3) we noted greater desirability of longer long-acting ART and new HIV cure-related strategies among participants <50 years versus those ≥50 years. Our analysis provides a deeper understanding of differences in perceptions among various age groups regarding desirable future ART characteristics, and motivations and barriers to participating in HIV cure-related strategies. Our findings can help inform community engagement and education, and assist researchers in tailoring study design and recruitment efforts to major age groups.


Assuntos
Fatores Etários , Terapia Antirretroviral de Alta Atividade/psicologia , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Adulto , Idoso , Altruísmo , Fármacos Anti-HIV/uso terapêutico , Estudos Transversais , Feminino , Infecções por HIV/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Pesquisa Qualitativa , Estigma Social , Inquéritos e Questionários , Estados Unidos/epidemiologia , Carga Viral , Adulto Jovem
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