Oncodermatology: Advancing the Science and Care of Cancer Patients and Survivors.
Ontology highlight
ABSTRACT:
SUBMITTER: Bang AS
PROVIDER: S-EPMC10569770 | biostudies-literature | 2022 Jul
REPOSITORIES: biostudies-literature
Publications
Oncodermatology: Advancing the Science and Care of Cancer Patients and Survivors.
Bang Alexander S AS Anadkat Milan J MJ Choi Jennifer N JN LeBoeuf Nicole R NR Jung Jae Y JY Markova Alina A Gordon Allison A Rossi Anthony M AM Noor Sarah J SJ Sibaud Vincent V Lacouture Mario E ME
American journal of clinical dermatology 20220705 4
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Project description:ObjectivesData collected during routine care holds the potential to support hypothesis generation, study feasibility, and provide insight regarding how to address problems under real world conditions. Currently there are no practice-based research networks in Florida that focus on complementary care in general or medical marijuana specifically. Through an academic-industry partnership, we sought to develop a practice-based research network focused on cannabis science and create a de-identified database for analyses that support hypothesis generation, study feasibility estimation, and a network that also facilitates recruitment into future research studies.DesignThe Complementary Care Practice-Based Research Network (CC-PBRN) is a centralized repository, which contains electronic health records (EHR) from a private medical cannabis health system in the state of Florida.ResultsThis paper provides cross-sectional descriptive analyses of the CC-PBRN's 43,802 currently active patients. There are 24 clinics in the network with nine in North Florida, 11 in Central Florida, and 4 in South Florida.ConclusionThis network serves as a statewide resource for patient-reported outcomes (PRO) research in medical marijuana. The network currently has numerous outpatient practices with thousands of patients that are a potential source of research participants for both observational studies as well as traditional clinical trials. The outpatient clinical practices can also serve as units of analysis for pragmatic trials comparing different care protocols and organizational structure.
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Project description:The way in which we assess researchers has been under the radar in the past few years. Critics argue that current research assessments focus on productivity and that they increase unhealthy pressures on scientists. Yet, the precise ways in which assessments should change is still open for debate. We circulated a survey with Flemish researchers to understand how they work, and how they would rate the relevance of specific indicators used in research assessments. We found that most researchers worked far beyond their expected working schedule. We also found that, although they spent most of their time doing research, respondents wished they could dedicate more time to it and spend less time writing grants and performing other activities such as administrative duties and meetings. When looking at success indicators, we found that indicators related to openness, transparency, quality, and innovation were perceived as highly important in advancing science, but as relatively overlooked in career advancement. Conversely, indicators which denoted of prestige and competition were generally rated as important to career advancement, but irrelevant or even detrimental in advancing science. Open comments from respondents further revealed that, although indicators which indicate openness, transparency, and quality (e.g., publishing open access, publishing negative findings, sharing data, etc.) should ultimately be valued more in research assessments, the resources and support currently in place were insufficient to allow researchers to endorse such practices. In other words, current research assessments are inadequate and ignore practices which are essential in contributing to the advancement of science. Yet, before we change the way in which researchers are being assessed, supporting infrastructures must be put in place to ensure that researchers are able to commit to the activities that may benefit the advancement of science.
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Project description:In the past few decades, prevention scientists have developed and tested a range of interventions with demonstrated benefits on child and adolescent cognitive, affective, and behavioral health. These evidence-based interventions offer promise of population-level benefit if accompanied by findings of implementation science to facilitate adoption, widespread implementation, and sustainment. Though there have been notable examples of successful efforts to scale up interventions, more work is needed to optimize benefit. Although the traditional pathway from intervention development and testing to implementation has served the research community well-allowing for a systematic advance of evidence-based interventions that appear ready for implementation-progress has been limited by maintaining the hypothesis that evidence generation must be complete prior to implementation. This sets up the challenging dichotomy between fidelity and adaptation and limits the science of adaptation to findings from randomized trials of adapted interventions. The field can do better. This paper argues for the development of strategies to advance the science of adaptation in the context of implementation that would more comprehensively describe the needed fit between interventions and their settings, and embrace opportunities for ongoing learning about optimal intervention delivery over time. Efforts to build the resulting adaptome (pronounced "adapt-ohm") will include the construction of a common data platform to house systematically captured information about variations in delivery of evidence-based interventions across multiple populations and contexts, and provide feedback to intervention developers, as well as the implementation research and practice communities. Finally, the article identifies next steps to jumpstart adaptome data platform development.
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