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Results: 1 to 10 of 15

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The Online Support Group as a Community: A Thematic Content Analysis of an Online Support Group for Idiopathic Subglottic Stenosis.
Haik D, Kashanchi K, Tajran S, Heilbronn C, Anderson C, Francis DO, Gelbard A, Verma SP
(2019) Ann Otol Rhinol Laryngol 128: 293-299
MeSH Terms: Access to Information, Disease Management, Emotions, Female, Global Health, Humans, Information Dissemination, Internet, Laryngostenosis, Male, Psychosocial Support Systems, Self-Help Groups
Show Abstract · Added July 30, 2020
OBJECTIVE: - Idiopathic subglottic stenosis (iSGS) is a rare disease with few local resources for individuals to use. With the explosive growth of online social networking, platforms such as Facebook possess compelling potential to facilitate user-driven sharing of health information and peer support. This study was performed to better understand the content shared in a busy online community for individuals with iSGS.
METHODS: - The largest online community (OC) for individuals with iSGS, Living With Idiopathic Subglottic Stenosis (LwiSGS), was examined. A thematic content analysis of the communications shared in February of 2018 was performed. A conventional qualitative analysis model was employed to analyze aggregated data. The data were then codified.
RESULTS: - Analysis demonstrated that communications primarily encompassed three major thematic elements: (1) information sharing; (2) emotional support, expression, and experience sharing; and (3) community building. Positively toned posts grossly overshadowed negatively toned posts by almost a factor of 3. A significant portion of group members requested information from their peers, suggesting a high level of trust toward the resources provided in this group, even those involving a surgical procedure or medication.
CONCLUSION: - LwiSGS is a forum for patients with a rare chronic condition to share informational resources, personal experiences, and emotional support, as well as a community with their peers. These data suggest that LwiSGS could be a powerful resource for individuals with iSGS to share information, personal experiences, or emotional support.
0 Communities
1 Members
0 Resources
MeSH Terms
The Dawning of a New Editorial Board for Gastroenterology.
Corley DA, Peek RM
(2016) Gastroenterology 151: 4-8
MeSH Terms: Access to Information, Authorship, Biomedical Research, Editorial Policies, Gastroenterology, Goals, Humans, Information Dissemination, Journal Impact Factor, Peer Review, Research, Periodicals as Topic
Added April 6, 2017
0 Communities
1 Members
0 Resources
11 MeSH Terms
Vanderbilt University Institute of Imaging Science Center for Computational Imaging XNAT: A multimodal data archive and processing environment.
Harrigan RL, Yvernault BC, Boyd BD, Damon SM, Gibney KD, Conrad BN, Phillips NS, Rogers BP, Gao Y, Landman BA
(2016) Neuroimage 124: 1097-1101
MeSH Terms: Access to Information, Databases, Factual, Electronic Data Processing, Humans, Information Dissemination, Multimodal Imaging, Neuroimaging, Quality Control, Software
Show Abstract · Added February 15, 2016
The Vanderbilt University Institute for Imaging Science (VUIIS) Center for Computational Imaging (CCI) has developed a database built on XNAT housing over a quarter of a million scans. The database provides framework for (1) rapid prototyping, (2) large scale batch processing of images and (3) scalable project management. The system uses the web-based interfaces of XNAT and REDCap to allow for graphical interaction. A python middleware layer, the Distributed Automation for XNAT (DAX) package, distributes computation across the Vanderbilt Advanced Computing Center for Research and Education high performance computing center. All software are made available in open source for use in combining portable batch scripting (PBS) grids and XNAT servers.
Copyright © 2015 Elsevier Inc. All rights reserved.
0 Communities
2 Members
0 Resources
9 MeSH Terms
Recommendations for mass spectrometry data quality metrics for open access data (corollary to the Amsterdam principles).
Kinsinger CR, Apffel J, Baker M, Bian X, Borchers CH, Bradshaw R, Brusniak MY, Chan DW, Deutsch EW, Domon B, Gorman J, Grimm R, Hancock W, Hermjakob H, Horn D, Hunter C, Kolar P, Kraus HJ, Langen H, Linding R, Moritz RL, Omenn GS, Orlando R, Pandey A, Ping P, Rahbar A, Rivers R, Seymour SL, Simpson RJ, Slotta D, Smith RD, Stein SE, Tabb DL, Tagle D, Yates JR, Rodriguez H
(2011) Proteomics Clin Appl 5: 580-9
MeSH Terms: Access to Information, Benchmarking, Guidelines as Topic, Mass Spectrometry, Proteomics, Research Design
Show Abstract · Added June 26, 2014
Policies supporting the rapid and open sharing of proteomic data are being implemented by the leading journals in the field. The proteomics community is taking steps to ensure that data are made publicly accessible and are of high quality, a challenging task that requires the development and deployment of methods for measuring and documenting data quality metrics. On September 18, 2010, the U.S. National Cancer Institute (NCI) convened the "International Workshop on Proteomic Data Quality Metrics" in Sydney, Australia, to identify and address issues facing the development and use of such methods for open access proteomics data. The stakeholders at the workshop enumerated the key principles underlying a framework for data quality assessment in mass spectrometry data that will meet the needs of the research community, journals, funding agencies, and data repositories. Attendees discussed and agreed up on two primary needs for the wide use of quality metrics: (i) an evolving list of comprehensive quality metrics and (ii) standards accompanied by software analytics. Attendees stressed the importance of increased education and training programs to promote reliable protocols in proteomics. This workshop report explores the historic precedents, key discussions, and necessary next steps to enhance the quality of open access data. By agreement, this article is published simultaneously in Proteomics, Proteomics Clinical Applications, Journal of Proteome Research, and Molecular and Cellular Proteomics, as a public service to the research community. The peer review process was a coordinated effort conducted by a panel of referees selected by the journals.
Copyright © 2011 WILEY-VCH Verlag GmbH & Co. KGaA, Weinheim.
0 Communities
1 Members
0 Resources
6 MeSH Terms
Recommendations for mass spectrometry data quality metrics for open access data (corollary to the Amsterdam principles).
Kinsinger CR, Apffel J, Baker M, Bian X, Borchers CH, Bradshaw R, Brusniak MY, Chan DW, Deutsch EW, Domon B, Gorman J, Grimm R, Hancock W, Hermjakob H, Horn D, Hunter C, Kolar P, Kraus HJ, Langen H, Linding R, Moritz RL, Omenn GS, Orlando R, Pandey A, Ping P, Rahbar A, Rivers R, Seymour SL, Simpson RJ, Slotta D, Smith RD, Stein SE, Tabb DL, Tagle D, Yates JR, Rodriguez H
(2012) Proteomics 12: 11-20
MeSH Terms: Access to Information, Benchmarking, Guidelines as Topic, Mass Spectrometry, Proteomics, Research Design
Show Abstract · Added June 26, 2014
Policies supporting the rapid and open sharing of proteomic data are being implemented by the leading journals in the field. The proteomics community is taking steps to ensure that data are made publicly accessible and are of high quality, a challenging task that requires the development and deployment of methods for measuring and documenting data quality metrics. On September 18, 2010, the U.S. National Cancer Institute (NCI) convened the "International Workshop on Proteomic Data Quality Metrics" in Sydney, Australia, to identify and address issues facing the development and use of such methods for open access proteomics data. The stakeholders at the workshop enumerated the key principles underlying a framework for data quality assessment in mass spectrometry data that will meet the needs of the research community, journals, funding agencies, and data repositories. Attendees discussed and agreed upon two primary needs for the wide use of quality metrics: (i) an evolving list of comprehensive quality metrics and (ii) standards accompanied by software analytics. Attendees stressed the importance of increased education and training programs to promote reliable protocols in proteomics. This workshop report explores the historic precedents, key discussions, and necessary next steps to enhance the quality of open access data. By agreement, this article is published simultaneously in Proteomics, Proteomics Clinical Applications, Journal of Proteome Research, and Molecular and Cellular Proteomics, as a public service to the research community. The peer review process was a coordinated effort conducted by a panel of referees selected by the journals.
Copyright © 2012 WILEY-VCH Verlag GmbH & Co. KGaA, Weinheim.
0 Communities
1 Members
0 Resources
6 MeSH Terms
Recommendations for mass spectrometry data quality metrics for open access data (corollary to the Amsterdam Principles).
Kinsinger CR, Apffel J, Baker M, Bian X, Borchers CH, Bradshaw R, Brusniak MY, Chan DW, Deutsch EW, Domon B, Gorman J, Grimm R, Hancock W, Hermjakob H, Horn D, Hunter C, Kolar P, Kraus HJ, Langen H, Linding R, Moritz RL, Omenn GS, Orlando R, Pandey A, Ping P, Rahbar A, Rivers R, Seymour SL, Simpson RJ, Slotta D, Smith RD, Stein SE, Tabb DL, Tagle D, Yates JR, Rodriguez H
(2012) J Proteome Res 11: 1412-9
MeSH Terms: Access to Information, Benchmarking, Guidelines as Topic, Mass Spectrometry, Proteomics, Research Design
Show Abstract · Added March 5, 2014
Policies supporting the rapid and open sharing of proteomic data are being implemented by the leading journals in the field. The proteomics community is taking steps to ensure that data are made publicly accessible and are of high quality, a challenging task that requires the development and deployment of methods for measuring and documenting data quality metrics. On September 18, 2010, the U.S. National Cancer Institute (NCI) convened the "International Workshop on Proteomic Data Quality Metrics" in Sydney, Australia, to identify and address issues facing the development and use of such methods for open access proteomics data. The stakeholders at the workshop enumerated the key principles underlying a framework for data quality assessment in mass spectrometry data that will meet the needs of the research community, journals, funding agencies, and data repositories. Attendees discussed and agreed up on two primary needs for the wide use of quality metrics: (1) an evolving list of comprehensive quality metrics and (2) standards accompanied by software analytics. Attendees stressed the importance of increased education and training programs to promote reliable protocols in proteomics. This workshop report explores the historic precedents, key discussions, and necessary next steps to enhance the quality of open access data. By agreement, this article is published simultaneously in the Journal of Proteome Research, Molecular and Cellular Proteomics, Proteomics, and Proteomics Clinical Applications as a public service to the research community. The peer review process was a coordinated effort conducted by a panel of referees selected by the journals.
0 Communities
1 Members
0 Resources
6 MeSH Terms
Recommendations for mass spectrometry data quality metrics for open access data (corollary to the Amsterdam Principles).
Kinsinger CR, Apffel J, Baker M, Bian X, Borchers CH, Bradshaw R, Brusniak MY, Chan DW, Deutsch EW, Domon B, Gorman J, Grimm R, Hancock W, Hermjakob H, Horn D, Hunter C, Kolar P, Kraus HJ, Langen H, Linding R, Moritz RL, Omenn GS, Orlando R, Pandey A, Ping P, Rahbar A, Rivers R, Seymour SL, Simpson RJ, Slotta D, Smith RD, Stein SE, Tabb DL, Tagle D, Yates JR, Rodriguez H
(2011) Mol Cell Proteomics 10: O111.015446
MeSH Terms: Access to Information, Benchmarking, Guidelines as Topic, Mass Spectrometry, Proteomics, Research Design
Show Abstract · Added March 5, 2014
Policies supporting the rapid and open sharing of proteomic data are being implemented by the leading journals in the field. The proteomics community is taking steps to ensure that data are made publicly accessible and are of high quality, a challenging task that requires the development and deployment of methods for measuring and documenting data quality metrics. On September 18, 2010, the United States National Cancer Institute convened the "International Workshop on Proteomic Data Quality Metrics" in Sydney, Australia, to identify and address issues facing the development and use of such methods for open access proteomics data. The stakeholders at the workshop enumerated the key principles underlying a framework for data quality assessment in mass spectrometry data that will meet the needs of the research community, journals, funding agencies, and data repositories. Attendees discussed and agreed up on two primary needs for the wide use of quality metrics: 1) an evolving list of comprehensive quality metrics and 2) standards accompanied by software analytics. Attendees stressed the importance of increased education and training programs to promote reliable protocols in proteomics. This workshop report explores the historic precedents, key discussions, and necessary next steps to enhance the quality of open access data. By agreement, this article is published simultaneously in the Journal of Proteome Research, Molecular and Cellular Proteomics, Proteomics, and Proteomics Clinical Applications as a public service to the research community. The peer review process was a coordinated effort conducted by a panel of referees selected by the journals.
0 Communities
1 Members
0 Resources
6 MeSH Terms
Evaluating re-identification risks with respect to the HIPAA privacy rule.
Benitez K, Malin B
(2010) J Am Med Inform Assoc 17: 169-77
MeSH Terms: Access to Information, Computer Security, Confidentiality, Electronic Health Records, Guideline Adherence, Health Insurance Portability and Accountability Act, Humans, Models, Statistical, Registries, Risk Assessment, United States
Show Abstract · Added March 29, 2013
OBJECTIVE - Many healthcare organizations follow data protection policies that specify which patient identifiers must be suppressed to share "de-identified" records. Such policies, however, are often applied without knowledge of the risk of "re-identification". The goals of this work are: (1) to estimate re-identification risk for data sharing policies of the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule; and (2) to evaluate the risk of a specific re-identification attack using voter registration lists.
MEASUREMENTS - We define several risk metrics: (1) expected number of re-identifications; (2) estimated proportion of a population in a group of size g or less, and (3) monetary cost per re-identification. For each US state, we estimate the risk posed to hypothetical datasets, protected by the HIPAA Safe Harbor and Limited Dataset policies by an attacker with full knowledge of patient identifiers and with limited knowledge in the form of voter registries.
RESULTS - The percentage of a state's population estimated to be vulnerable to unique re-identification (ie, g=1) when protected via Safe Harbor and Limited Datasets ranges from 0.01% to 0.25% and 10% to 60%, respectively. In the voter attack, this number drops for many states, and for some states is 0%, due to the variable availability of voter registries in the real world. We also find that re-identification cost ranges from $0 to $17,000, further confirming risk variability.
CONCLUSIONS - This work illustrates that blanket protection policies, such as Safe Harbor, leave different organizations vulnerable to re-identification at different rates. It provides justification for locally performed re-identification risk estimates prior to sharing data.
1 Communities
1 Members
0 Resources
11 MeSH Terms
Access to information sources and treatment considerations among men with local stage prostate cancer.
Ramsey SD, Zeliadt SB, Arora NK, Potosky AL, Blough DK, Hamilton AS, Van Den Eeden SK, Oakley-Girvan I, Penson DF
(2009) Urology 74: 509-15
MeSH Terms: Access to Information, Aged, Humans, Male, Middle Aged, Neoplasm Staging, Prospective Studies, Prostatic Neoplasms
Show Abstract · Added March 5, 2014
OBJECTIVES - To determine the role of information sources in the treatment decision-making process of men diagnosed with local stage prostate cancer. Diagnosed men have access to a large number of information sources about therapy, including print and broadcast media, the Internet, books, and friends with the disease.
METHODS - Prospective survey of men with local stage prostate cancer in 3 geographically separate regions was carried out. Most men were surveyed after diagnosis but before starting therapy.
RESULTS - On average, men with local prostate cancer consulted nearly 5 separate sources of information before treatment. The most common source of information was the patient's physician (97%), followed by lay-literature (pamphlets, videos) (76%), other health professionals (71%), friends with prostate cancer (67%), and the Internet (58%). Most men rated the sources they consulted as helpful. Consulting the Internet was associated with considering more treatment options. Several information sources were significantly associated with considering particular treatments, but the magnitude of association was small in relation to patient age, comorbidity, and Gleason score. More than 70% of men stated that they were considering or planning only one type of therapy.
CONCLUSIONS - Men with local stage prostate cancer consult a wide range of information sources. Nonphysician information sources appear to influence their treatment considerations, but to a smaller degree than clinical factors.
0 Communities
1 Members
0 Resources
8 MeSH Terms
Drinking from the firehose of scientific publishing.
Patil C, Siegel V
(2009) Dis Model Mech 2: 100-2
MeSH Terms: Access to Information, Animals, Biomedical Research, Disease Models, Animal, Editorial Policies, Humans, Internet, Peer Review, Research, Periodicals as Topic, PubMed, Publications, Publishing
Show Abstract · Added December 1, 2015
The fundamental question is this: can the wisdom of crowds be exploited to post-filter the literature?
0 Communities
1 Members
0 Resources
12 MeSH Terms