Cruzrosendahl5449
Addressing rural health disparities has unique challenges that require cross-sector collaborations to address social determinants of health and help those in need to get connected to care continuum. We brought the Clinical and Translational Science Award, Institutional Development Award Program Infrastructure for Clinical and Translational Research, and Cooperative Extension System Programs together for a one-day semi-structured meeting to discuss collaborative opportunities to address rural health disparities. Session notes and event materials were analyzed for themes to facilitate collaboration such as defining rural, critical issues, and organizational strengths in support of collaboration. Across 16 sessions, there were 26 broad topics of discussion. The most frequent topics included "barriers and challenges," "strategies and opportunities," and "defining rural." There is a growing understanding of the opportunity that collaboration between these large programs provides in addressing rural health disparities.[This corrects the article DOI 10.1017/cts.2020.23.].Recent revisions to the Federal Policy for the Protections of Human Subjects require that informed consent documents begin with a "concise and focused presentation" of the key information a participant requires. Key information "must be organized and presented in a way that facilitates comprehension." The regulations do not specify what information be included, nor how it must be presented to facilitate comprehension. It is unknown how institutions and Institutional Review Boards (IRBs) are interpreting the current regulations. We conducted a review of randomly sampled available key information templates at 46 US medical institutions to determine how they are implementing the new regulations.
High-quality data are critical to the entire scientific enterprise, yet the complexity and effort involved in data curation are vastly under-appreciated. This is especially true for large observational, clinical studies because of the amount of multimodal data that is captured and the opportunity for addressing numerous research questions through analysis, either alone or in combination with other data sets. However, a lack of details concerning data curation methods can result in unresolved questions about the robustness of the data, its utility for addressing specific research questions or hypotheses and how to interpret the results. ABT-199 inhibitor We aimed to develop a framework for the design, documentation and reporting of data curation methods in order to advance the scientific rigour, reproducibility and analysis of the data.
Forty-six experts participated in a modified Delphi process to reach consensus on indicators of data curation that could be used in the design and reporting of studies.
We identified 46 in to smaller observational studies and preclinical research. The DAQCORD Guidelines provide a framework for achieving high-quality data; a cornerstone of health research.
The updated common rule, for human subjects research, requires that consents "begin with a 'concise and focused' presentation of the key information that will most likely help someone make a decision about whether to participate in a study" (Menikoff, Kaneshiro, Pritchard.
. 2017;
(7) 613-615.). We utilized a community-engaged technology development approach to inform feature options within the REDCap software platform centered around collection and storage of electronic consent (eConsent) to address issues of transparency, clinical trial efficiency, and regulatory compliance for informed consent (Harris, et al.
2009;
(2) 377-381.). eConsent may also improve recruitment and retention in clinical research studies by addressing (1) barriers for accessing rural populations by facilitating remote consent and (2) cultural and literacy barriers by including optional explanatory material (e.g., defining terms by hovering over them with the cursor) or the choice of displaying different videos/images based on participant's race, ethnicity, or educational level (Phillippi, et al.
. 2018;
(4) 529-534.).
We developed and pilot tested our eConsent framework to provide a personalized consent experience whereby users are guided through a consent document that utilizes avatars, contextual glossary information supplements, and videos, to facilitate communication of information.
The eConsent framework includes a portfolio of eight features, reviewed by community stakeholders, and tested at two academic medical centers.
Early adoption and utilization of this eConsent framework have demonstrated acceptability. Next steps will emphasize testing efficacy of features to improve participant engagement with the consent process.
Early adoption and utilization of this eConsent framework have demonstrated acceptability. Next steps will emphasize testing efficacy of features to improve participant engagement with the consent process.
To enhance the performance evaluation of Clinical and Translational Science Award (CTSA) hubs, we examined the utility of advanced bibliometric measures that go beyond simple publication counts to demonstrate the impact of translational research output.
The sampled data included North Carolina Translational and Clinical Science Institute (NC TraCS)-supported publications produced between September 2008 and March 2017. We adopted advanced bibliometric measures and a state-of-the-art bibliometric network analysis tool to assess research productivity, citation impact, the scope of research collaboration, and the clusters of research topics.
Totally, 754 NC TraCS-supported publications generated over 24,000 citation counts by April 2017 with an average of 33 cites per article. NC TraCS-supported research papers received more than twice as many cites per year as the average National Institute of Health-funded research publications from the same field and time. We identified the top productive researchers and their networks within the CTSA hub. Findings demonstrated the impact of NC TraCS in facilitating interdisciplinary collaborations within the CTSA hub and across the CTSA consortium and connecting researchers with right peers and organizations.
Both improved bibliometrics measures and bibliometric network analysis can bring new perspectives to CTSA evaluation via citation influence and the scope of research collaborations.
Both improved bibliometrics measures and bibliometric network analysis can bring new perspectives to CTSA evaluation via citation influence and the scope of research collaborations.