Acquisition, Analysis, and Sharing of Data in 2015 and Beyond: A Survey of the Landscape A Conference Report From the American Heart Association Data Summit 2015

被引:37
作者
Antman, Elliott M.
Benjamin, Emelia J.
Harrington, Robert A.
Houser, Steven R.
Peterson, Eric D.
Bauman, Mary Ann
Brown, Nancy
Bufalino, Vincent
Califf, Robert M.
Creager, Mark A.
Daugherty, Alan
Demets, David L.
Dennis, Bernard P.
Ebadollahi, Shahram
Jessup, Mariell
Lauer, Michael S.
Lo, Bernard
MacRae, Calum A.
McConnell, Michael V.
McCray, Alexa T.
Mello, Michelle M.
Mueller, Eric
Newburger, Jane W.
Okun, Sally
Packer, Milton
Philippakis, Anthony
Ping, Peipei
Prasoon, Prad
Roger, Veronique L.
Singer, Steve
Temple, Robert
Turner, Melanie B.
Vigilante, Kevin
Warner, John
Wayte, Patrick
机构
[1] 75 Francis St., Boston, 02115, MA
来源
JOURNAL OF THE AMERICAN HEART ASSOCIATION | 2015年 / 4卷 / 11期
关键词
AHA Scientific Statements; clinical trials; data; epidemiology; ethics; mobile health; preclinical; CLINICAL-DATA STANDARDS; SCIENTIFIC STATEMENT; PRECISION MEDICINE; MOBILE HEALTH; BIG DATA; CARDIOVASCULAR-DISEASE; UNDIAGNOSED DISEASES; DIGITAL TECHNOLOGY; PHYSICAL-ACTIVITY; NATIONAL HEART;
D O I
10.1161/JAHA.115.002810
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Background-A 1.5-day interactive forum was convened to discuss critical issues in the acquisition, analysis, and sharing of data in the field of cardiovascular and stroke science. The discussion will serve as the foundation for the American Heart Association's (AHA's) near-term and future strategies in the Big Data area. The concepts evolving from this forum may also inform other fields of medicine and science. Methods and Results-A total of 47 participants representing stakeholders from 7 domains (patients, basic scientists, clinical investigators, population researchers, clinicians and healthcare system administrators, industry, and regulatory authorities) participated in the conference. Presentation topics included updates on data as viewed from conventional medical and nonmedical sources, building and using Big Data repositories, articulation of the goals of data sharing, and principles of responsible data sharing. Facilitated breakout sessions were conducted to examine what each of the 7 stakeholder domains wants from Big Data under ideal circumstances and the possible roles that the AHA might play in meeting their needs. Important areas that are high priorities for further study regarding Big Data include a description of the methodology of how to acquire and analyze findings, validation of the veracity of discoveries from such research, and integration into investigative and clinical care aspects of future cardiovascular and stroke medicine. Potential roles that the AHA might consider include facilitating a standards discussion (eg, tools, methodology, and appropriate data use), providing education (eg, healthcare providers, patients, investigators), and helping build an interoperable digital ecosystem in cardiovascular and stroke science. Conclusion-There was a consensus across stakeholder domains that Big Data holds great promise for revolutionizing the way cardiovascular and stroke research is conducted and clinical care is delivered; however, there is a clear need for the creation of a vision of how to use it to achieve the desired goals. Potential roles for the AHA center around facilitating a discussion of standards, providing education, and helping establish a cardiovascular digital ecosystem. This ecosystem should be interoperable and needs to interface with the rapidly growing digital object environment of the modern-day healthcare system.
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页数:40
相关论文
共 115 条
[1]  
Accreditation Council for Continuing Medical Education (ACCME ®), 2015, 2014 ANNUAL REPORT
[2]   Patients in Context - EHR Capture of Social and Behavioral Determinants of Health [J].
Adler, Nancy E. ;
Stead, William W. .
NEW ENGLAND JOURNAL OF MEDICINE, 2015, 372 (08) :698-701
[3]  
Alston C., 2012, Discussion Paper
[4]   Implementing Electronic Health Care Predictive Analytics: Considerations And Challenges [J].
Amarasingham, Ruben ;
Patzer, Rachel E. ;
Huesch, Marco ;
Nguyen, Nam Q. ;
Xie, Bin .
HEALTH AFFAIRS, 2014, 33 (07) :1148-1154
[5]  
American Heart Association (AHA), OP SCI POL TAT AHA F
[6]  
Anderson G, 1998, CONTROL CLIN TRIALS, V19, P61
[7]   Compliance with Results Reporting at ClinicalTrials.gov [J].
Anderson, Monique L. ;
Chiswell, Karen ;
Peterson, Eric D. ;
Tasneem, Asba ;
Topping, James ;
Califf, Robert M. .
NEW ENGLAND JOURNAL OF MEDICINE, 2015, 372 (11) :1031-1039
[8]   Fusing Randomized Trials With Big Data The Key to Self-learning Health Care Systems? [J].
Angus, Derek C. .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2015, 314 (08) :767-768
[9]  
[Anonymous], 2013, NY TIMES
[10]  
[Anonymous], 2013, ALL TRIALS REPORTED