Active Participants In Research Research Articles

P2.03a-047 Clinical Trial Participation and Outcomes in Non-Small Cell Lung Cancer: Case-Control Study: Topic: Clinical Trials

There is some evidence that patients who participate in clinical trials have improved outcomes compared with patients receiving standard chemotherapy. We look forward if the outcome for patients with stage III and IV non-small cell lung cancer treated on a clinical trial was associated with a better outcome at our institution, a tertiary center in Spain. Patients with NSCLC treated on standard chemotherapy/TKI between 2010 and 2015 were matched with individuals who received 1st line chemotherapy or TKI in a clinical trial in a ratio 2:1. Cases were matched for age (<65 years or >65 years), stage (III or IV), histology (adenocarcinoma, squamous), EGFR status (mutated vs wild-type) and therapy received in 1st line (platinum doublet, TKI). All patients were World Health Organisation (WHO) performance status 0 or 1. Patients in each group were well matched for stage, histological sub type, surgery and treatment. The median follow up for patients treated on a trial was 3.2 years, compared with 2.8 years for matched patients who received standard 1st line therapy. The median overall survival for patients treated on a trial was 19.4 months, compared with 15.8 months for those in a matched control group. The difference between groups was not significant (Log rank test, HR 0.81, 95% CI: 0.42 to 1.35, p=0.5). The difference in overall survival between groups was not significant (Log Rank test, HR 0.87, 95% CI: 0.46 to1.64, p=0.7). Data from our institution, a tertiary center active in clinical trials, shows a good outcome for patients with advanced NSCLC regardless of whether they received 1st line therapy on a clinical trial. There is a trend for a better outcome for those patients that are enrolled in a clinical trial, so this encourages our active participation in clinical research.

Attitudes towards continuous professional development and postgraduate education of Croatian students of physiotherapy

Relevance: Contemporary physiotherapy requires continuous professional development (CPD) and growth of evidence based knowledge to satisfy emerging needs of further development of the profession. This requires awareness of the importance of CPD, research and postgraduate education. Purpose: The aim of this study was to examine attitudes of Croatian undergraduate students of physiotherapy towards CPD, postgraduate education and research. Our objective was to provide insight into views and intentions of future physiotherapists regarding their further academic education, CPD activities and their knowledge and interest in active participation in research. Methods/Analysis: A cross-sectional survey study involved 496 (45, 6%) of physiotherapy students enrolled at the University of Applied Health Sciences in Zagreb and the College of Applied Sciences Lavoslav Ruzicka in Vukovar, Croatia during academic year 2015/2016. Participants were undergraduate students ; 68, 9% female and 31, 1% male. Average age of the subjects was 20(range 18-41). A structured 33-items closed ended questionnaire was developed for the study. Statistical analyses were performed using SPSS 19.0. Descriptive statistics and correlations were performed for all variables of interest. Mann Whitney U test was used to compare students by gender and Kruskall-Wallis H test to compare students by year of study. The level of significance was set at p< 0, 05. Results: Almost all of students (98, 6%) used the Internet for education at least twice per week. However, their usage of scientific databases was moderate (76, 6%), but it tended to grow with the year of study (50% ; 86, 7% ; 95, 1%). Only 15, 2% of students did not plan to enroll in postgraduate study and 36, 4% definitely planned to enroll. Their attitudes toward CPD were very positive ; 89, 9% understood the need to participate in CPD activities. Female students valued higher this need(p˂0, 001). CPD was assessed as very important for efficient physiotherapy practice (4, 5 on Likert scale 1-5). Performing research was also assessed as very important (4, 4). Also, there was a strong positive correlation between importance of research and CPD (r=0, 61 ; p˂0, 001). However, their interest for active participation in research was modest (3, 3), and their self-assessed knowledge regarding research methodology was even worse (2, 8). Publishing of scientific papers was assessed as rather important (3, 6), more to female students (p=0, 002), as well as pursuing master and doctoral degrees (4). Discussion and conclusions: Croatian physiotherapy students have positive attitudes towards CPD. Significant number of students plan to continue with postgraduate study and they are well aware of the importance of postgraduate education. Likewise, they are aware of the value of research in physiotherapy, but they lack in knowledge and interest to participate in research themselves. Their IT competences are sufficient to enable them to use digital media to participate in CPD activities. Impact and Implications: Results of this study emphasize the need to improve our students´ knowledge of research methodology through curriculum and to encourage them to develop basic research competencies. Their interest and ambitions for research could be improved by exposing them to different aspects of research during their study.

Traumatic dental injury research: on children or with children?

It is widely acknowledged that children should participate in healthcare decisions, service development and even setting research agendas. Dental traumatology is a major component of paediatric dentistry practice and research. However, little is known about young patients' contribution to new knowledge in this field. The aim of the study was to establish the extent to which children are involved in contemporary dental trauma research and to evaluate the quality of the related literature. A systematic review of the dental trauma literature was conducted from 2006 to 2014. The electronic databases, MEDLINE and Scopus, were used to identify relevant studies. The selected papers were independently examined by five calibrated reviewers. Studies were categorized by the degree of children's involvement and appraised using a validated quality assessment tool. The initial search yielded 4374 papers. After application of the inclusion and exclusion criteria, only 96 studies remained. Research on children accounted for 87.5% of papers, and a proxy was involved in 4.2%. Children were engaged to some degree in only 8.3% of studies, and there were no studies where children were active research participants. In the quality assessment exercise, papers scored, on average, 57% (range = 14-86%). There is scope to encourage more active participation of children in dental trauma research in the future. Furthermore, there are some areas where the quality of research could be improved overall.

Special Issue: Selected papers from the Topical Problems of Biophotonics conference

The ensuing seven papers represent the sampling of the science presented at the Topical Problems in Biophotonics (TPB) conference that took place aboard a cruise ship on the river Volga and its tributaries in July 2015. This bi-annual gathering of active researchers and clinicians in the field of biomedical optics has, over the last decade, become globally renowned for its high-quality science, ample discussion opportunities, informal atmosphere, active participation of experienced and novice researchers alike, beautiful background scenery of the Russian “heartland”, and establishment of both scientific and personal connections and collaborations. It was the fifth conference organized by scientific and educational institutions of Nizhny Novgorod (Institute of Applied Physics RAS, Nizhny Novgorod State Medical Academy, and Nizhny Novgorod State University). We are grateful to the Journal of Biophotonics for providing the opportunity to showcase this special conference. The breadth and depth of TPB's science was reflected in its three sub-conferences (Optical BioImaging, Nanobiophotonics, and Novel Laser Bio-Applications) and two workshops (Clinical Biophotonics and Tumour & Stem Cell Biology). These seven representative Journal of Biophotonics papers were selected from various tracks of the conference, have undergone the journal's rigorous peer-review process, and span the range from volumetric optical imaging to novel contrast agents to advanced microscopies. Specifically, Liu et al. 1 report on a mouse study using optical coherence tomography (OCT) to enable high diagnostic accuracy for glomerulonephritis based on structural and elastic tissue parameters. Wang et al. 2 employed Doppler OCT for four-dimensional live monitoring of hemodynamics in a mammalian embryonic heart with quantification of blood flow velocity. Yashchenok et al. 3 describe the fabrication methodology of polyelectrolyte microcapsules characterized by very high absorption in NIR, with promising potential as contrast agents for both photoacoustic imaging and for therapy (theranostics). Another class of photonic contrast agents are nanodiamonds that are amenable to bio-functionalization; their nanotoxicity in a zebrafich embryo model is examined by Lin et al. 4. Razali et al. 5 report on imaging photoluminescent nanoruby probes with wide-field time-gated photoluminescence microscopy, demonstrating significant increase in imaging contrast. Kalinina et al. 6 present an approach to mapping cell metabolic parameters and pO2 by combined use of FLIM and PLIM, demonstrating an attractive imaging platform for ex vivo monitoring of tumor oxygen status (a key determinant for proper treatment strategy selection). In vivo monitoring of oxygen saturation in the brain by NIR spectroscopy provides unique opportunities for non-invasive brain disorder diagnostics and monitoring; thus, Clancy et al. 7 present MRI-based numerical simulation of NIR spectroscopy towards improving the accuracy of quantitative mapping of oxygen saturation in brain. As seen from this brief overview of the selected titles, research in biophotonics presented at TPB-15 is interesting and exciting indeed. On behalf of the TPB's organizing committee and its enthusiastic attendees, we wish you pleasant “light” reading of these papers and look forward to your active participation in TPB-17!

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research.

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of 'autonomy' as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles - those of autonomy, integrity and authority - to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other - to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.

Grounded theory and ethnography combined

Purpose– Libraries are closing or reducing opening hours in the UK due to budgetary cuts. Library provision for children is consequently diminishing and libraries have to justify their existence. Therefore a reliable methodology for assessing the importance of libraries is vital to demonstrate their value to children’s literacy. Two methodologies were combined to study children visiting children’s mobile libraries (CMLs). The purpose of this paper is to consider whether the combined, qualitative methodology was the correct choice.Design/methodology/approach– Aspects of each methodology are examined for their appropriateness for researching children. The compatibility of their philosophical stance and the validity of combining ethnography and grounded theory is explored and questioned.Findings– It is found that grounded theory and ethnography were the optimum combination to form a powerful research tool that allows children to be active participants in research. The combined methodology was successful because the ethnographic elements allowed the researcher to enter to the children’s world, whereas the grounded theory elements provided a structural framework, exploration into a novel research topic and ensured that a valid conclusion was drawn.Originality/value– It is unusual for qualitative methodologies such as grounded theory and ethnography to be combined in order to study learning in a non-pedagogic, library environment. This paper is valuable reading for librarians, or educationalists wishing to examine how libraries aid literacy because it verifies the benefits of the combined methodology of grounded theory and ethnography and provides a template which can be used by other researchers.

Citizen Science with Hubble Space Telescope Data

Many members of the general public are enthusiastic about science and, in particular, astronomy. Numerous opportunities to learn about and engage in enjoying astronomical discoveries exist, especially through the Hubble Space Telescope (HST) education and outreach program (http://hubblesite.org). In addition, the general public is interested in active participation in research, which is made possible through citizen science projects. Although many flavors of citizen science exist today, those involving HST data are of the visual classification variety and are aimed specifically at producing unique scientific results that would be difficult if not impossible to accomplish without large numbers of citizen science volunteers. This article touches on several projects based on HST data, covering several different astrophysics areas.

대만 문헌정보학 분야의 공저 네트워크 분석 연구

The purpose of this research was to investigate the characteristics of library and information science (LIS) field in Asian countries, focusing on the case of Taiwan. In order to conduct this study, the obtained statistical data and co-authorship networks based on eight major LIS journals in Taiwan were analyzed and compared to the case of South Korea. In Taiwan like Korea, papers published by a single-author and 2 to 3 co-authors were the most common. The centrality analysis showed that leading professors in the national-level university in Taiwan have strong and distinctive ties in the network. Additional unique characteristics pertaining to collaboration in Taiwan include the existence of journals focused on practical aspects in the field of LIS and active research participation involving librarians who publish papers in these journals.

Crop protection, environment, health, and biodiversity: observations and outlook.

This special issue of Environmental Science and Pollution Research highlights selected papers presented at the 43rd congress organized by the French Group of Pesticide Research (BGroupe Francais des Pesticides,^ GFP) which was held in Albi, from 29 to 31 May 2013, and officially hosted by Champollion University, France. The congress was held in the beautiful settings of the Episcopal city with its Cathedral and the Toulouse Lautrec museum, recently listed as UNESCO world heritage. Albi is a prefecture city of the Midi-Pyrenees region, one of the most agricultural regions of France. The GFP met the French scientific community involved in research into phytosanitary compounds. The conferences took place in French and addressed numerous issues dealing with the use of pesticides, their utility to agriculture, and their consequences for the environment and human health. Discussions included their mode of action, analysis and transfer through the environment and along food chains, and finally their elimination. Occurring annually, this congress is a place of rich exchanges not only between scientists but also with technical institutes, which are becoming increasingly present. These congresses are an opportunity for researchers to present their work and to compare their findings with others in a constructive atmosphere. Both the contributors and the audience were French researchers from the academic and institutional world, francophone researchers from foreign universities, and researchers from plant protection industries. Representatives from various French agencies, ministries, and agencies in charge of development were one of the audiences: agronomists and technicians also participated in this meeting. Particular encouragement was given to the active participation of young researchers (MSc or PhD students). The main objectives of this conference were to review current knowledge of the French-speaking scientific community in all areas concerning pesticides, to feed national debate, to allow the emergence of new paths of research, and to foster collaborations between research organizations, institutions, and industrial environments. Responsible editor: Philippe Garrigues

Psychological Aspects of Intellectual Property Protection

Intellectual property is a result of creative intellectual work. It is a reflection of humans personality and individuality. Creative and research activities form an important part of intellectual activities. By means of active participation in research and creative work people can express themselves, their individuality and desires. Intellectual property rights have relatively amorphous character. The problem is that many people do not regard them as monopoly and this causes copyright and patent infringement and unauthorized use of exclusive rights.The aim of the paper is to examine the psychological aspects of creating and protecting of intellectual property. The primary methodof research is the panel survey of researchers and creators. By means of panel survey different forms of motivation for intellectual property protection were revealed.

Community - Based Participatory Research with Hispanic/Latino Leaders and Members

Hispanic/Latinos (H/L) are being studied for healthcare disparities research utilizing community - based participatory research (CBPR). CBPR’s active participation of community members and researchers suggests improvement in community health. Yet there are no known studies that inductively investigated the lived experience of H/L community leaders and members with CBPR using interpretive phenomenology. Data were obtained from observations, field notes, biographical interviews, individual interviews and focus groups. The findings supported that community members wanted to collaborate with researchers utilizing the C BPR approach so that culturally sensitive interventions can be created to encourage health - seeking behaviors in their community.

Mentoring and Training of Cancer-Related Health Disparities Researchers Committed to Community-Based Participatory Research.

The National Cancer Institute's (NCI) Community Networks Program Centers (CNPCs) provide community-based participatory research (CBPR)-oriented mentoring and training to prepare early-stage/midcareer investigators and student trainees (trainees) in disparities reduction. This paper describes the academic, mentoring, training, and work-life balance experiences of CNPC-affiliated trainees. We used a collaborative and iterative process to develop a 57-item, web-based questionnaire completed by trainees from the 23 CNPCs between August 2012 and February 2013. Their CNPC mentors completed a 47-item questionnaire. Descriptive statistics were calculated. The final analytic sample included 189 of 269 individuals (70%) identified as active participants in CNPC research or training/mentoring. Mentors (n=45) were mostly non-Hispanic White (77.8%) and 48.9% were male. Mentors published a median of 6 (interquartile range [IQR], 3-12) first-authored and 15 (IQR, 6-25) senior authored manuscripts, and secured 15 (IQR, 11-29) grants from the National Institutes of Health (NIH) and other sources in the previous 5 years. Most trainees (n=144) were female (79.2%), 43.7% were underrepresented racial/ethnic minorities, and 36.8% were first-generation college graduates. Over the previous 5 years, trainees reported a median of 4 (IQR, 1-6) publications as first author and 4 (IQR, 2-8) as co-author; 27.1% reported having one or more NIH R01s. Trainees reported satisfaction with their CNPC mentor (79.1%) and confidence in demonstrating most CBPR competencies. The CNPC training program consists of a scientifically productive pool of mentors and trainees. Trainees reported rates of scholarly productivity comparable to other national training programs and provided insights into relationships with mentors, academic pressures, and professional-personal life balance.

Future of Bio-fertilizers in Indian agriculture: An Overview

In India the availability and affordability of fossil fuel based chemical fertilizers at the farm level have been ensured only through imports and subsidies. Today, biofertilizers have emerged as a highly potent alternative to chemical fertilizers due to their eco-friendly, easy to apply, non-toxic and cost effective nature. Also, they make nutrients that are naturally abundant in soil or atmosphere, usable for plants and act as supplements to agrochemicals. In addition, they are a product that is likely to be commercially promising in the long run once information becomes available adequately to producers and farmers through experience and communication. In India, government has been trying to increase the application of bio fertilizers along with modern agrochemicals. This paper underlines the success/failure issues in Indian context and for its future in India emphasizes the need for high degree of innovation and active participation in scientific research and development, public awareness programmes to enhance the extra-potential of sustainable agriculture development as well as encouraging private organization and policy makers to take interest in this field.

Developing a new model for patient recruitment in mental health services: a cohort study using Electronic Health Records

ObjectivesTo develop a new model for patient recruitment that harnessed the full potential of Electronic Health Records (EHRs). Gaining access to potential participants’ health records to assess their eligibility for...

The Right to be Seen, the Right to be Shown

The article deals with the ethical questions that a researcher encountered when planning, conducting and reporting on research concerning young people’s everyday lives. The empirical data based on observations, photographs and interviews were gathered from among teenagers who were spending time, or ‘hanging out’, at a shopping mall in the centre of Helsinki, Finland. First, ethical dilemmas regarding the planning phase of the research are described. The data-gathering phase is then analyzed, and the status of the researcher in the ‘research field’ is explored. Lastly, the different positions of the adult researcher and young participants are illustrated by giving examples of the photographs taken. Complex issues relating to young people’s roles as either active participants in research or potentially vulnerable objects of study are discussed, and the importance of more flexible and context-sensitive solutions regarding ethical decisions is highlighted.

English

BACKGROUND & OBJECTIVES: Research plays a vital role in health sciences as an integral part of health education. Hence, this study was undertaken with objective of assessing awareness and attitude regarding research in dental students of Central India. METHODS: A prospective, cross-sectional, questionnaire-based study carried out on 300 dental students (75 in each batch), selected by simple random sampling. Data was collected and analyzed for percentage, mean and standard deviation. RESULTS: 99.6% students responded; 99.3% students were aware about research, and 94% students were interested in research, 99.3% thought that research is important in medical field and 83% were willing to contribute to research project. Barriers for research were no extra time for research (57%) and lack of guidance (21.6%). 73.3% students agreed that research should be included as a part of dental curriculum. INTERPRETATION & CONCLUSION: Though dental students were aware of research and interested in research, significant barriers were deterring them from active participation in research. Provision of creating a favorable environment and building of sound knowledge and introducing the concept of research in dental students is must for the individuals and society.

Tapping the wisdom of the crowd: New initiatives are engaging the public as active participants in biomedical research

Tapping the wisdom of the crowd: New initiatives are engaging the public as active participants in biomedical research

Qualitative research can improve understandings about disaster preparedness for independent older adults in the community

Purpose– Improving older adults’ preparedness for and response to natural disasters has become an important issue. Population ageing, together with concerns about increasing extreme weather-related events, has added further impetus to the need to reduce older adults’ vulnerability to disasters. The purpose of this paper is to discuss the above issues.Design/methodology/approach– Social and environmental influences on community dwelling independent older adults have not been accounted for in models of hazard adjustment, which have invariably used quantitative research methods.Findings– To date much of the preparedness and response research has focused on organisational responses to preparedness, while perspectives from older adults have received less attention. Furthermore social and environmental influences on community dwelling independent older adults have not been accounted for in models of hazard adjustment.Originality/value– Extending research to include qualitative methodologies, which recognises older adults as active participants in research about themselves, would contribute to increasing understandings about influences on disaster preparedness and response; and inform social policies and prevention programmes.

Reflections on collaborative research: to what extent and on whose terms?

<span>Collaborative research, for instance, emancipatory and participatory disability research, arose from critique against the lack of active disabled people's participation in research, which failed to emphasize their personal experiences. By referring to power positions in a qualitative sociological study with young women with an intellectual impairment, and inspired by collaborative research, I discuss the possible methodological and ethical dilemmas found in different research phases, and in relation to the participants. I argue that collaborative research can benefit from being problematized and discussed further regarding the categorization of disability, as well as participation.</span>

Ask us too! Doing participatory research with disabled children in the global south

This article considers how disabled children and young people living in the global south can be included actively in research that explores their lives. While acknowledging the complex, theoretical dilemmas in the overlapping arenas of childhood, disability and international development, the focus here is on methodology. Many researchers argue that children in diverse contexts can be active participants in research and this is increasingly occurring globally. However, this trend towards consulting children themselves is rarely extended to those with disabilities. Arguably, they are accidentally forgotten, assumed to have nothing to say or perceived to be methodologically difficult to include. Thus, disabled children and young people’s perspectives are overlooked, particularly in the global south. We describe two participatory research projects with disabled children and young people in India and Sri Lanka, and focus particularly on practical issues that arose including recruitment, information and consent processes and data collection methods. We argue that considering these issues and making the necessary adaptations to enable children with a variety of impairments to participate meaningfully contributes to enacting both the relevant United Nations conventions, the 1989 United Nations Convention on the Rights of the Child and the 2006 United Nations Convention on the Rights of Persons with Disabilities. Advocating their participation without making appropriate provisions is potentially tokenistic and unethical. It is necessary and possible to include them both in ‘mainstream’ child-focussed research, and specific disability-orientated projects. Involving disabled children in research has dual purposes: inclusion of their perspectives alongside those of other children and highlighting their disability-specific views where relevant. What they say may be surprising to some and challenge assumptions about them. Importantly, this will contribute to reducing their marginalisation from mainstream society.