scholarly journals Improving dissemination of study results: perspectives of individuals with cystic fibrosis

2019 ◽  
Vol 15 (3-4) ◽  
pp. 1-14
Author(s):  
Emily Christofides ◽  
Karla Stroud ◽  
Diana Elizabeth Tullis ◽  
Kieran C. O’Doherty
Keyword(s):  
Cystic Fibrosis ◽  
Research Ethics ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
Research Findings ◽  
The Impact ◽  
To Receive ◽  
Accessible Format

The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and what research participants’ views are in this regard. We interviewed 21 adults with cystic fibrosis who had previously participated in research and 2 research coordinators at a cystic fibrosis clinic. We aimed to better understand research participants’ views on receiving research results, types of findings they are interested in, how they would like to receive this information, and the impact this might have on future participation. Participants reported that they do not generally recall receiving study findings, though many reported that they would like to receive them. While some participants were not interested in receiving results, all participants felt that these results should be provided when desired by participants and believed that receiving study findings would support future participation. Participants felt that an accessible format, such as a lay summary, would be most helpful. This study supports calls to make study findings available to participants, though the format in which they are provided requires consideration. Participants rarely recalled receiving findings despite the clinic in which this study was conducted returning them regularly. Therefore, questions pertaining to the provision of study findings must focus less on whether to share the findings and more on how to share them with participants most effectively. The logistics of providing study findings may be challenging in some cases, but participant support for the practice highlights its importance.

scholarly journals Assessing research participant preferences for receiving study results

2019 ◽  
Vol 4 (3) ◽  
pp. 243-249
Author(s):  
Sarah Cook ◽  
Stephanie Mayers ◽  
Kathryn Goggins ◽  
David Schlundt ◽  
Kemberlee Bonnet ◽  
...  
Keyword(s):  
Focus Groups ◽  
Information Needs ◽  
College Education ◽  
Research Participant ◽  
Stakeholder Group ◽  
Survey Study ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
To Receive

AbstractIntroduction:Dissemination of results to research participants is largely missing from the practices of most researchers. Few resources exist that describe best practices for disseminating information to this important stakeholder group.Methods:Four focus groups were conducted with a diverse group of individuals. All participants were part of a Patient-Centered Outcomes Research Institute-funded survey study. Focus groups aimed to identify participants’ preferences about receiving research results and their reactions to three different dissemination platforms.Results:Four focus groups with 37 participants were conducted, including: (1) adults with one comorbidity, at least a college education, and high socioeconomic status (SES); (2) adults with one comorbidity, less than a college education, and lower SES; (3) adults with low health literacy and/or numeracy; and (4) Black or African American adults. Participants discussed their preferences for research results delivery and how each of the platforms met those preferences. This included information needs as they relate to content and scope, including a desire to receive both individual and aggregate results, and study summaries. Email, paper, and website were all popular avenues of presentation. Some desired a written summary, and others preferred videos or visual graphics. Importantly, participants emphasized the desire for having a choice in the timing, frequency, and types of results.Conclusion:Research participants prefer to receive research results, including study impact and key findings, disseminated to them in an engaging format that allows choice of when and how the information is presented. The results encourage new standards whereby research participants are considered a critical stakeholder group.

scholarly journals Engaging Research Participants with Results: A Rights Informed Approach

2020 ◽  
Author(s):  
Mathew Sunil George ◽  
Rakhal Gaitonde ◽  
Rachel Davey ◽  
Itismita Mohanty ◽  
Penney Upton
Keyword(s):  
Added Value ◽  
Socially Responsible ◽  
Research Results ◽  
Research Participants ◽  
Ethics Framework ◽  
South Indian ◽  
Indian State ◽  
Research Findings ◽  
Medical Research Ethics ◽  
The Impact

Abstract IntroductionSharing findings with research participants is gaining attention as an ethical imperative for the research community. However, current discussions on this topic typically take a paternalistic approach to the issue, with the research team having the power to decide whether or not the sharing of results should be carried out and how this is done. In this paper we propose an alternative approach to engaging participants with the findings from the research to which they have contributed.MethodsThe ethnographic fieldwork for our study was carried out in multiple phases from August 2018 to January 2019 and again from August 2019 to December 2019 among two vulnerable communities in the south Indian state of Kerala. Engagement of research participants with findings was integrated into the research protocol and various strategies including forming partnerships with participants and identifying appropriate forms of dissemination among the different categories of participants were carried out during fieldwork. The format and mode of dissemination varied depending on the participant category and was tailored to ensure that each participant was able to engage actively with the findings as opposed to merely passively receiving the results from our study,ResultsPrevious research studies that had been undertaken among our participants had not shared research results with them and were interpreted by the communities that researchers were not interested in making any difference to their situation. Building reciprocal relationships in a way that minimised power disparities and tailoring outputs to forms that promoted active engagement were key factors that helped participants to engage with our results. Such engagement added value to our research by enabling us to jointly evolve the recommendations from our study.Conclusion Participants contribute to the success of research by providing information that is sought by researchers. Compared to the dominant bio-medical research ethics framework, a rights informed approach to sharing research results with participants acknowledges this and recognises their agency to engage with research findings. Such an approach is not only socially responsible and ethical, but also improves the impact and legitimacy of research among the participants and the larger population that they represent.

scholarly journals Research and Publication Ethics

2021 ◽  
Vol 7 (3) ◽  
pp. 198-207
Author(s):  
PO Olatunji
Keyword(s):  
Research Ethics ◽  
Early Research ◽  
Publication Ethics ◽  
Research Participants ◽  
Research Findings ◽  
Research Period

Research is an effort to seek the truth and communicate it. In the process, participants or subjects of research must be recognised and respected, and the principles of research ethics must protect the vulnerable from exploitation. The researcher must do the reporting of research findings with honesty and professionalism. Non-adherence to the above principles in the early research period resulted in gross abuse of personality and autonomy. Research is now subjected to rigorous scrutiny to stem the tide of abuse and ascertain and guarantee the sanctity of the research participants, process and product. These are the fundamentals of the practice of ethics in both research and publication. In effect, this paper aims to address ethics and its application to research and publications.

scholarly journals The effect analysis of the research results on the spatial concentration and utilization sharing of research equipment

2017 ◽  
Vol 9 ◽  
pp. 184797901771035
Author(s):  
Donghun Yoon
Keyword(s):  
Performance Index ◽  
Research Paper ◽  
Spatial Concentration ◽  
Effect Analysis ◽  
Research Results ◽  
Research Institutes ◽  
Study Results ◽  
Equipment Utilization ◽  
The Impact ◽  
Research Equipment

In this study, research materials for the spatial concentration and utilization sharing of research equipment were surveyed, and then the effect factor and the effectiveness were analyzed based on the research results. Also, information regarding research result creation was provided through research equipment utilization sharing. The research results of 100 researchers (25 national research institutes in the Ministry of Science, ICT (Information and Communications Technologies), and Future Planning of South Korea) were chosen for the effect analysis. For the study results, the medicine and pharmacy researchers showed better performance in research equipment utilization sharing than the natural science and engineering researchers. The number of research paper coauthors and the research equipment utilization sharing execution policy of research institutes influenced the rate of research equipment utilization sharing. The research field, the number of research paper coauthors, the research equipment utilization sharing execution policy of research institutes, and the research institute characteristics influenced the utilization sharing of research equipment in the research environment. Also, the utilization sharing of research equipment was statistically significantly influenced by the number of research papers and the impact factor (IF). The utilization sharing of research equipment was not statistically significantly influenced, however, by the IF mean. In this study, the quantitative performance index was found to be effective, and the qualitative performance index was found to be ineffective. In the analysis model, when the researchers followed the research equipment utilization sharing execution policy of the research institutes, the research results improved.

scholarly journals A Study on Change Management and Employees Performance in IMS

2021 ◽  
pp. 40-48
Author(s):  
Yu Hai Yun
Keyword(s):  
Data Collection ◽  
Change Management ◽  
Analytical Data ◽  
Secondary Data ◽  
Research Results ◽  
Data Collection Process ◽  
Research Findings ◽  
Secondary Information ◽  
The Impact

The result or outcome of an entity for its deliberate operational success is the outcome or outcome of an institution with regard to the desired objectives and targets. Operational output the study utilizes the analytical data collection process. For analysis, though, it will use both primary and secondary information. The main statistics is information that the author gathers through surveys or questionnaires and the secondary data is the data collected from prior studies and research. The study examined the effect of change management on the quality of workers, taking into account many factors such as ethics, productivity, morale and interaction among others. The research findings have shown that the greater the integrity of workers and the better the interaction, the higher the productivity and the lower the attrition. The study analyzed the impact of change management on employees’ performance, taking into account many factors such as organizational ethics, recruitment, morale and interaction. The research results demonstrate that the higher the moral and communication standards of employees are at work, the greater the retention and the lower the turnover.

scholarly journals Next generation sequencing in psychiatric research: what study participants need to know about research findings

2013 ◽  
Vol 16 (9) ◽  
pp. 2119-2127 ◽  
Author(s):  
Ghislaine Mathieu ◽  
Iris Jaitovich Groisman ◽  
Beatrice Godard
Keyword(s):  
Next Generation Sequencing ◽  
Human Subjects ◽  
Consent Process ◽  
Psychiatric Research ◽  
Return Of Results ◽  
Next Generation ◽  
Research Participants ◽  
Research Findings ◽  
The Impact ◽  
Generation Sequencing

Abstract The use of next generation sequencing (NGS) technologies in psychiatric genetics research and its potential to generate individual research results will likely have far reaching implications for predictive and diagnostic practices. The extent of this impact may not be easily understood by psychiatric research participants during the consent process. The traditional consent process for studies involving human subjects does not address critical issues specific to NGS research, such as the return of results. We examined which type of research findings should be communicated, how this information should be conveyed during the consent process and what guidance is required by researchers and IRBs to help psychiatric research participants understand the peculiarities, the limits and the impact of NGS. Strong standards are needed to ensure appropriate use of data generated by NGS, to meet participants' expectations and needs, and to clarify researchers' duties regarding the disclosure of data and their subsequent management. In the short term, researchers and IRBs need to be proactive in revising current consent processes that deal with the disclosure of research findings.

The impact of the high emergency lung transplantation program in cystic fibrosis in France: insight from a comparison with Canada

2021 ◽  
pp. 2100014
Author(s):  
Adèle Coriati ◽  
Jenna Sykes ◽  
Lydie Lemonnier ◽  
Xiayi Ma ◽  
Sanja Stanojevic ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Lung Transplantation ◽  
Population Based ◽  
Transplant Survival ◽  
Post Transplant ◽  
Kaplan Meier ◽  
Before And After ◽  
Cumulative Incidence Curve ◽  
The Impact ◽  
To Receive

IntroductionFrance implemented a high emergency lung transplantation (HELT) program nationally in 2007. A similar program does not exist in Canada. The objectives of our study were to compare health outcomes within France as well as between Canada and France before and after the HELT program in a population with Cystic Fibrosis (CF).MethodsThis population-based cohort study utilised data from the French and Canadian CF registries. A cumulative incidence curve assessed time to transplant with death without transplant as competing risks. The Kaplan-Meier method was used to estimate post-transplant survival.ResultsBetween 2002 and 2016, there were 1075 (13.0%) people with CF in France and 555 (10.2%) people with CF in Canada who underwent lung transplantation. The proportion of lung transplant increased in France after the HELT program was initiated (4.5% versus 10.1%) whereas deaths pre-transplant decreased from 85.3% in the pre-HELT to 57.1% in the post-HELT period. Between 2008–2016, people in France were significantly more likely to receive a transplant (Hazard Ratio (HR) 1.56, 95% CI 1.37–1.77, p<0.001) than die (HR 0.55, 95% CI 0.46–0.66, p<0.001) compared to Canada. Post-transplant survival was similar between the countries and there was no difference in survival when comparing pre- and post-HELT period in France.ConclusionFollowing the implementation of the HELT program, people living with CF in France were more likely to receive a transplant than die. Post-transplant survival in the post-HELT period in France did not change compared to the pre-HELT period, despite potentially sicker patients being transplanted, and is comparable to Canada.

scholarly journals Recommendations for the Return of Research Results to Study Participants and Guardians: A Report From the Children's Oncology Group

2012 ◽  
Vol 30 (36) ◽  
pp. 4573-4579 ◽  
Author(s):  
Conrad V. Fernandez ◽  
Kathleen Ruccione ◽  
Robert J. Wells ◽  
Jay B. Long ◽  
Wendy Pelletier ◽  
...  
Keyword(s):  
Task Force ◽  
Return Of Results ◽  
Personal Contact ◽  
Oncology Group ◽  
Cooperative Research ◽  
Group Setting ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
Study Participants

Purpose The Children's Oncology Group (COG) strongly supports the widely recognized principle that research participants should be offered a summary of study results. The mechanism by which to do so in a cooperative research group setting has not been previously described. Methods On the basis of a review of the available empirical and theoretic literature and on iterative, multidisciplinary discussion, a COG Return of Results Task Force (RRTF) offered detailed recommendations for the return of results to research study participants. Results The RRTF established guidelines for the notification of research participants and/or their parents/guardians about the availability of research results, a mechanism for and timing of sharing results via registration on the COG public Web site, the scope of the research to be shared, the target audience, and a process for creating and vetting lay summaries of study results. The RRTF recognized the challenges in adequately conveying complex scientific results to audiences with varying levels of health literacy and recommended that particularly sensitive or complex results be returned using direct personal contact. The RRTF also recommended evaluation of the cost, effectiveness, and impact of sharing results. Conclusion These recommendations provide a framework for the offering and returning of results to participants. They can be used by individual investigators, multi-investigator research collaboratives, and large cooperative groups.

scholarly journals A pomidory są te, co zawsze. Refleksje z baskijskiego terenu

2021 ◽  
Author(s):  
Katarzyna Mirgos
Keyword(s):  
Personal Experience ◽  
Basque Country ◽  
Research Process ◽  
Research Results ◽  
Research Participants ◽  
Ethnographic Fieldwork ◽  
Political Dimensions ◽  
The Impact ◽  
The Relationship

This article focuses on personal experience of fieldwork in the Basque Country. The author reflects on the linguistic and political dimensions of her research, on the relationship between the researcher and research participants, and on the emotional challengesof ethnographic fieldwork, with particular focus on the impact of motherhood on such research. Emphasizing the importance of autoethnography, the author also points out a variety of approaches to the research process and ways of presenting research results.

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