scholarly journals Characterizing health researcher barriers to sharing results with study participants

2019 ◽  
Vol 3 (6) ◽  
pp. 295-301 ◽  
Author(s):  
Pearl A. McElfish ◽  
Christopher R. Long ◽  
Laura P. James ◽  
Aaron J. Scott ◽  
Elizabeth Flood-Grady ◽  
...  

AbstractIntroduction:Research participants want to receive results from studies in which they participate. However, health researchers rarely share the results of their studies beyond scientific publication. Little is known about the barriers researchers face in returning study results to participants.Methods:Using a mixed-methods design, health researchers (N = 414) from more than 40 US universities were asked about barriers to providing results to participants. Respondents were recruited from universities with Clinical and Translational Science Award programs and Prevention Research Centers.Results:Respondents reported the percent of their research where they experienced each of the four barriers to disseminating results to participants: logistical/methodological, financial, systems, and regulatory. A fifth barrier, investigator capacity, emerged from data analysis. Training for research faculty and staff, promotion and tenure incentives, and funding agencies supporting dissemination of results to participants were solutions offered to overcoming barriers.Conclusions:Study findings add to literature on research dissemination by documenting health researchers’ perceived barriers to sharing study results with participants. Implications for policy and practice suggest that additional resources and training could help reduce dissemination barriers and increase the return of results to participants.

2019 ◽  
Vol 45 (3) ◽  
pp. 143-184 ◽  
Author(s):  
Jocelyn R. Smith Lee ◽  
Michael A. Robinson

Black males are disproportionately the victims of police killings in the United States, yet few studies have examined their personal narratives of trauma and bereavement resulting from police violence. Informed by critical race theory and stress and coping theory, we used a modified grounded theory approach to conduct and analyze in-depth, semistructured life history interviews with 40 young Black men (aged 18-24 years) in Baltimore, Maryland. Study participants were recruited from a GED and job readiness center serving Baltimore youth. Study results offer a nuanced understanding of the patterning and mental health consequences of police violence for young Black men. Participant disclosures of witnessing and experiencing police violence began in childhood and spanned through emerging adulthood, met Diagnostic and Statistical Manual of Mental Disorders–Fifth Edition criteria for trauma exposure, and embodied theoretical conceptualizations of racial trauma. Exposures to police violence fostered distrust of police and informed participants’ appraisals of their vulnerability to police violence across the life course. Six study participants disclosed losing loved ones to police killings. Injustice and hypervigilance accompanied grief. Implications for research, policy, and practice are discussed.


2012 ◽  
Vol 30 (36) ◽  
pp. 4573-4579 ◽  
Author(s):  
Conrad V. Fernandez ◽  
Kathleen Ruccione ◽  
Robert J. Wells ◽  
Jay B. Long ◽  
Wendy Pelletier ◽  
...  

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.


2013 ◽  
Vol 4 (3) ◽  
Author(s):  
Jamie Shelly ◽  
Debbie Hiller ◽  
Lingxiao Zhai ◽  
Stefanie Ferreri ◽  
Macary Weck Marciniak

Objectives: 1) To determine parents' and/or guardians' interest in having pharmacists provide children's liquid medications in a pre-measured, individualized dosing device 2) To assess parents' and/or guardians' perception of dosing liquid medications for a child. Design: Observational survey Setting: Regional chain pharmacy in North Carolina Participants: > 18 years old, parent/guardian of a childchain, responsible for administering child's liquid medication Intervention: 14 item questionnaire Main Outcome Measure: Interest in pharmacists providing children's liquid medications in pre-measured, individualized dosing devices Results: 250 questionnaires were mailed; 42 were marked "return to sender" (16.8%), 22 were returned completed (10.6%), and 20 of the 22 met inclusion criteria (9.6%). 95% of study participants reported being interested in having pharmacists provide children's liquid medications in the proposed dosing device, and 40% were willing to pay for such a service. 90% of respondents reported it is "not at all difficult" to understand the amount of dose a child is to receive, while 55% reported it is "not at all difficult" to measure doses. 25% of respondents reported sometimes using a kitchen spoon to measure a child's medication. Conclusion: Community pharmacists should explore providing children's liquid medications in an individualized dosing device, as study results determined parents are interested in and willing to pay for the theoretical device. Further large-scale studies would be beneficial in determining interest in and willingness to pay for the dosing device in various pharmacy settings nationwide.   Type: Original Research


2021 ◽  
Vol 49 (4) ◽  
pp. 030006052110123
Author(s):  
Sergej M. Ostojic ◽  
Aleksandra Milovancev ◽  
Patrik Drid ◽  
Alexandros Nikolaidis

In this open-label case series trial, we evaluated the effects of a nitrate-based nutritional formula on oxygen saturation (SpO2) and patient-reported outcomes in individuals with coronavirus disease 2019 (COVID-19). Five adult patients (three men and two women, age 39.6 ± 6.9 years) with a positive COVID-19 test result, breathing difficulties, and SpO2 ≤95%, who were free from other pulmonary and cardiovascular conditions, were recruited for this study. Participants were assigned to receive a multi-component nutritional formula (containing 1200 mg of potassium nitrate, 200 mg of magnesium, 50 mg of zinc, and 1000 mg of citric acid) every 4 hours during the 48-hour monitoring period. In all participants, SpO2 improved immediately after administration of the nutritional formula, from 1 to 7 percentage points (mean increase 3.6 ± 2.7 points; 95% confidence interval 0.3 to 7.0). SpO2 remained above baseline values throughout the monitoring interval, with values persisting over threshold values (>92%) for all patients and at each time point during the 48 hours. No patients reported any side effects of the intervention. These promising and rather unexpected results call for immediate, well-sampled, mechanistic randomized controlled trials to validate our findings.


2021 ◽  
pp. 174569162097983
Author(s):  
David A. Lishner

A typology of unpublished studies is presented to describe various types of unpublished studies and the reasons for their nonpublication. Reasons for nonpublication are classified by whether they stem from an awareness of the study results (result-dependent reasons) or not (result-independent reasons) and whether the reasons affect the publication decisions of individual researchers or reviewers/editors. I argue that result-independent reasons for nonpublication are less likely to introduce motivated reasoning into the publication decision process than are result-dependent reasons. I also argue that some reasons for nonpublication would produce beneficial as opposed to problematic publication bias. The typology of unpublished studies provides a descriptive scheme that can facilitate understanding of the population of study results across the field of psychology, within subdisciplines of psychology, or within specific psychology research domains. The typology also offers insight into different publication biases and research-dissemination practices and can guide individual researchers in organizing their own file drawers of unpublished studies.


Author(s):  
Shaimaa Moustafa Elsayed ◽  
Omayma Mohamed Hassanein ◽  
Nagwa Hassan Ali Hassan

Abstract Background The importance of influenza is increasing mainly because of the appearance of novel pandemic strains such as swine and avian. Each year, influenza has spread around the world causing about 250,000–500,000 deaths and more than 5 million cases of severe illness. The objective is as follows: evaluating the outcomes of patients with influenza A (H1N1) virus in relation to certain TNF-308, IL6, and IL8 polymorphisms and identifying the associated factors with the severe outcome. Subject and methods This is a case–control study. The cases were patients confirmed by real-time polymerase chain reaction (RT-PCR) to be influenza A (H1N1) virus infected. The controls were healthy individuals. Medical history and outcome of the disease was registered. In all study participants, polymorphisms of TNF rs1800629, IL6 rs18138879, and IL8 rs4073; odds ratio (OR); and the 95% confidence interval (95% CI) were calculated. Results Infection with influenza A (H1N1) virus was associated more with the following genotypes: TNF-308 AA (OR = 4.041; 95% CI = 1.215–13.4) and IL8 AA (OR = 3.273; 95% CI = 1.372–7.805). According to our study results, HCV (OR = 3.2, 95% CI 1.2–8.5), renal disease (OR = 3.4, 95% CI 0.9–13.6), cancer (OR = 3.1, 95% CI 0.3–31.1), TB (OR = 8.4, 95% CI 1.8–39.7), ICU (OR = 2.9, 95%1.2–7.1), and mortality (OR = 7.9, 95% CI 0.9–67.4) are considered as risk factors for influenza A (H1N1)-infected patients. Conclusions Our findings concluded that TNF-308 (AA) and IL8 (AA) polymorphisms may increase the susceptibility to be infected with H1N1influenza virus.


2021 ◽  
Vol 28 (03) ◽  
pp. 422-427
Author(s):  
Kanwal Ijaz ◽  
Muhammad Luqman Ali Bahoo ◽  
Beenish Karamat ◽  
Asia Aziz

Objective: To identify the association of blood pressure with DR and its severity in type two diabetics. Study Design: Descriptive, Correlational study. Setting: Outpatient Department of Layton Rahmatulla Benevolent Trust Eye Hospital, Lahore. Period: 1st July, 2016 to 30th August, 2016. Materials & Method: After recording of demographic data, 80 type two diabetics of age 45-65 years of both genders were evaluated by consultant ophthalmologist for status and grading of diabetic retinopathy. Blood pressure was recorded with the help of mercury sphygmomanometer. Data were entered and analyzed on SPSS version 22. Qualitative variables were mentioned as percentages. For comparison of quantitative variables, student ”t” test or mann whiten U test as per distribution of data, were applied. For exploring the association between blood pressure and diabetic retinopathy, spearman rho correlation test was employed. Results: Out of total 80 patients, 42 had DR of varying grade. Most of the study participants were females (62.5 %). On comparison between two groups, systolic blood pressure was not significantly different however, diastolic blood pressure had significant difference. Both systolic and diastolic blood pressure had significant association with severity of DR in both eyes of the patients with only exception of diastolic blood pressure with severity in left eye, which had non-significant correlation. Conclusion: The study results suggest that, blood pressure should be considered as a contributing factor for development and progression of diabetic retinopathy.


2016 ◽  
Vol 27 (2) ◽  
pp. 19-35
Author(s):  
Emily Janke ◽  
Barbara Holland ◽  
Kristin Medlin

Once an institution has chosen to recognize and reward community-engaged scholarship in its university-wide promotion and tenure policy, what are some strategies for aligning unit and department policies as well? This chapter describes the path followed at The University of North Carolina at Greensboro to align policies across all units and departments. Discussed are core strategies used to generate faculty support for community-engaged scholarship in promotion and tenure policy and practice, the themes revealed as a result of a weeklong dialogue initiative, and recommendations for continued improvement.


2015 ◽  
Author(s):  
Ronald D Vale

Scientific publications enable results and ideas to be transmitted throughout the scientific community. The number and type of journal publications also have become the primary criteria used in evaluating career advancement. Our analysis suggests that publication practices have changed considerably in the life sciences over the past thirty years. More experimental data is now required for publication, and the average time required for graduate students to publish their first paper has increased and is approaching the desirable duration of Ph.D. training. Since publication is generally a requirement for career progression, schemes to reduce the time of graduate student and postdoctoral training may be difficult to implement without also considering new mechanisms for accelerating communication of their work. The increasing time to publication also delays potential catalytic effects that ensue when many scientists have access to new information. The time has come for life scientists, funding agencies, and publishers to discuss how to communicate new findings in a way that best serves the interests of the public and the scientific community.


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