Acquisition, Analysis, and Sharing of Data in 2015 and Beyond: A Survey of the Landscape
Authors: 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 Véronique L. , Singer Steve , Temple Robert , Turner Melanie B. , Vigilante Kevin , Warner John , Wayte Patrick ,   the American Heart Association Data Sharing Summit Attendees
Published: November 2015

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.