scholarly journals Research Participants’ Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort (Preprint)

2020 ◽  
Author(s):  
Erika Rees-Punia ◽  
Alpa V Patel ◽  
Asher Beckwitt ◽  
Corinne R Leach ◽  
Susan M Gapstur ◽  
...  
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Race And Ethnicity ◽  
Research Participant ◽  
Prevention Study ◽  
Research Participants ◽  
Study Staff ◽  
Report Data ◽  
Case Design ◽  
Comparison Technique

BACKGROUND Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. OBJECTIVE The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. METHODS CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. RESULTS Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. CONCLUSIONS In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

scholarly journals Research Participants’ Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort

10.2196/18556 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e18556
Author(s):  
Erika Rees-Punia ◽  
Alpa V Patel ◽  
Asher Beckwitt ◽  
Corinne R Leach ◽  
Susan M Gapstur ◽  
...  
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Race And Ethnicity ◽  
Research Participant ◽  
Prevention Study ◽  
Research Participants ◽  
Study Staff ◽  
Report Data ◽  
Case Design ◽  
Comparison Technique

Background Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. Objective The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. Methods CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. Results Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. Conclusions In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

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 Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e041869
Author(s):  
Annabel Jones ◽  
Philippa Morgan-Jones ◽  
Monica Busse ◽  
Victoria Shepherd ◽  
Fiona Wood
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Neurodegenerative Disease ◽  
Social Interactions ◽  
Qualitative Methodology ◽  
Focus Group Research ◽  
Group Research ◽  
Methodological Considerations ◽  
Impact Data ◽  
Based Medicine

BackgroundInvolvement of vulnerable populations in research is critical to inform the generalisability of evidence-based medicine to all groups of the population.ObjectiveIn this communication, we reflect on our previous research, and that of other authors, to identify and explore key ethical and methodological considerations.DiscussionFocus groups are a widely implemented qualitative methodology, but their use, particularly in vulnerable neurodegenerative disease populations, is not straightforward. Although the risk of harm is generally low in focus group research, neurodegenerative disease populations are particularly vulnerable to issues relating to comprehension and their capacity to consent. Physical and cognitive impairments may also affect social interactions among participants and therefore impact data collection and analyses.ConclusionWe offer a number of ethical and methodological recommendations to facilitate the processes of recruitment and data collection when conducting focus groups with neurodegenerative disease populations.

Commentary 1: Research with Persons Under Involuntary Commitment—Ethical Issues Surrounding Competence and Voluntariness

2019 ◽  
Vol 14 (5) ◽  
pp. 475-478
Author(s):  
Matthé Scholten ◽  
Jochen Vollmann
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Research Participation ◽  
Research Participant ◽  
Involuntary Commitment ◽  
Proxy Consent ◽  
Undue Influence ◽  
Research Participants ◽  
Manic Symptoms ◽  
Prospective Research

In this case commentary, we analyze ethical concerns that were raised in response to an interview with a woman with bipolar disorder who was under involuntary commitment. We focus on competence and voluntariness as two prerequisites for valid informed consent. We recommend that judgments of competence be based on whether prospective research participants sufficiently possess certain decision-making abilities. Based on this functional approach, we argue that manic symptoms need not undermine competence and that, even if we were to assume that the research participant became incompetent during the interview, this would not invalidate her consent retroactively. It would, however, compromise her ability to revoke her consent. We furthermore show that obtaining additional proxy consent for research participation may compromise the autonomy of service users who are competent to consent. Then we turn to the issue of voluntariness. Arguing that neither the great strength nor the external etiology of a desire compromises voluntariness, we propose that the voluntariness of a decision instead depends on whether the decision-maker endorses it on reflection. The researchers disclosed that prospective research participants’ decision about study participation would have no influence on the duration of the commitment or the quality of care. We contend that because of this neither coercion nor undue influence was exerted in the informed consent process. Nevertheless, there is an increased likelihood of perceived coercion and undue influence under conditions of involuntary commitment, and we close by suggesting some safeguards to prevent this.

scholarly journals Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes

Dementia ◽  
2018 ◽  
Vol 17 (8) ◽  
pp. 1045-1054 ◽  
Author(s):  
Sarah Gregory ◽  
Katie Wells ◽  
Kate Forsyth ◽  
Cate Latto ◽  
Helen Szyra ◽  
...  
Keyword(s):  
Patient Involvement ◽  
Research Participant ◽  
Steering Committee ◽  
Research Participants ◽  
Prospective Cohort Studies ◽  
Participant Experience ◽  
The Impact ◽  
The Brain ◽  
Public And Patient Involvement

Aim Despite the growing importance of public and patient involvement in biomedical research, comparatively little attention has been paid to the important role of research participants themselves. Our aim in this paper is to explore the impact research participant involvement has within the PREVENT and the European Prevention of Alzheimer’s Dementia (EPAD) projects. Method In this paper, we report the experiences of involving research participants as collaborators in prospective cohort studies exploring early changes in the brain as pathways towards and risks for dementia. We use minutes and feedback from members of the panel and steering committee to understand the experience and impact on the study. Results We describe the aims and structure of the participant panel established within the PREVENT Dementia study and highlight its contributions to the organisation, conduct and future of the study. Key areas of contribution identified include recruitment, inclusion of additional sub-studies, understanding the participant experience and contributing to the future of the study. Discussion We then describe how the PREVENT Dementia panel forms the basis for participant involvement within EPAD project.

scholarly journals TEACHER’S QUESTIONS USED IN TEACHING ENGLISH AT THE 1ST GRADE STUDENTS OF ONE JUNIOR HIGH SCHOOL IN BANDUNG

2020 ◽  
Vol 3 (1) ◽  
pp. 78
Author(s):  
Gita Ernita ◽  
Tini Apriliani
Keyword(s):  
High School ◽  
Data Collection ◽  
Junior High School ◽  
Learning Process ◽  
Teaching And Learning ◽  
Research Participant ◽  
Teaching English ◽  
Short Answer ◽  
Descriptive Research ◽  
Short Answer Questions

Teachers are facilitators that assist students to make the learning process easier and more comfortale. Techer question is a part of learning process. The  aim  of  this  research  is to  find out the types  of  questions  asked  by teachers  in  teaching  and  learning  process.  This  research  is  descriptive  research.  Participant of this research are two English teachers at SMP PGRI Bandung. The  data  collection  used  two  instruments  namely    audio  recording  and  note taking.  From  this  research,  researcher  found  that  open ended questions are mostly occur in the classroom beside ; yes/no questions, short answer   questions,   display   questions,   referential   questions   and   non   retrieval questions. During research, there are three kind of languages used by teachers, they are English, mixed English –Indonesian, and Indonesian.

scholarly journals Ticket Payment Information System On The Sea Beach Light Using Simple Additive Weighting Method

2019 ◽  
Vol 1 (1) ◽  
pp. 25
Author(s):  
Eko Siswanto ◽  
Bayu Abdur rohman
Keyword(s):  
Information System ◽  
Data Collection ◽  
The Other ◽  
Weighting Method ◽  
Report Generation ◽  
Daily Lives ◽  
Central Java ◽  
Report Data ◽  
Simple Additive Weighting ◽  
Card Model

<p>The Sea Beach Cahaya is one of the rising beach attractions in Kendal Regency, Central Java. In general, the tourism object of The Sea Pantai Cahaya still does not use many computer systems in their daily lives. As with tourism ticket purchases and also entrance tickets, vehicles that still use ticket paper as proof of payment, it is often disrupted if it is still fussing with the queue conditions and questions by visitors. On the other hand, report data collection is still considered slow.</p><p>One way to overcome the above problems is to make a ticket payment system that is computerized using the SAW (Simple Additive Weighting) method, replace paper tickets with a card model and also use the network to shorten report generation.</p>

scholarly journals Museari: Art in a Virtual LGBT Museum Promoting Respect and Inclusion

2022 ◽  
pp. 180-197
Author(s):  
Ricard Huerta
Keyword(s):  
Human Rights ◽  
Teacher Training ◽  
Data Collection ◽  
Focus Groups ◽  
Art History ◽  
Participant Observation ◽  
Assessment Instruments ◽  
Virtual Museum ◽  
Sexual Diversity

Museari is an online museum dedicated to upholding human rights and sexual diversity through art, history, and education. Museari was born in 2015 and since then more than 70 exhibitions have been presented. This paper analyzes Museari's interest in teacher training, something that has been especially positive during the Covid-19 pandemic. The objective of the research is to reflect on the opportunity to use a virtual museum to address issues of art and education. For data collection, we used assessment instruments specific to the case study, such as diagnoses, discussions, focus groups, and participant observation. We highlight museum’s positive reception by the students, particularly the role it plays in overcoming stereotypes and conventional taboos to achieve inclusive environments.

scholarly journals English Learning Needs of the Biology Education Department Students

2018 ◽  
Author(s):  
Riana Agustin Tindjabate
Keyword(s):  
Data Collection ◽  
Biology Education ◽  
Learning Needs ◽  
English Learning ◽  
Research Subjects ◽  
Education Department ◽  
Christian University ◽  
Research Participants ◽  
English Speaking

The purpose of this study is to describe learning needs of the students of Biology Education Department on the English learning. The research was conducted at the Christian University of Tentena particularly in the Biology Education Department. The research subjects were 24 students who acted as research participants. The data collection was carried out by distributing questionnaires of the 25-BioSNEL to 24 participants. Data from the research showed that students of Biology Education Department of the Christian University of Tentena needed knowledge about the terms of English used in the field of biology education and for training English speaking students desperately needed exercises that teach them how to use the English vocabulary in daily conversation. The research concluded that the teaching of English in the field of biology education should be more focused on learning about the vocabulary and terms in the field of biology as well as learning about how to use the English vocabulary in conversation.

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