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Project HIE STANDARD
Data Sharing for Research
Dr. Sanghee Oh, Ph. D.
Data sharing is a growing problem in the Health Informatics field with the implementation of Electronic Health Records (EHR) as well as other forms of electronic repositories. With concerns about security breaches of public medical records growing, many patients, clinicians, and doctors worry that precious private data may be hacked and used for devious purposes. This hesitation limits the capability that providers of medical care can distribute to their patients, an underlying problem in high medical expenses. Due to a lack of shared information and research on this data, medical providers are limited in their ability to research critical data to find resolutions to arising medical issues.
First of all, data analysis conducted by countless researchers yield a plethora of findings which at this point is mostly bound to the researcher. Wide access to all such research can provide the possibility for detection of product safety and effectiveness. A large array of respected and certified clinicians will be able to proof read and give an assessment of findings in order to single out the most modern information and correct out dated sources. This increased transparency of information will allow for greater product reliability, analysis and set a standard for reporting and conducting clinical trials (Califf 2013.)
Additionally, solitary research may yield results on a target population that demands the utmost significance to overall public health. Targeting this data and allowing study and analysis increases the effectiveness of treatments, can result in prevention of seasonal diseases, and determine regional or geographic tendencies. This jolt in expanded access to research maximizes the effectiveness of clinical trials and the health of their participants by sharing data across previous boundaries (IOM 2015.)
Having a centralized database that allows accredited physicians and researchers access to the most modern published information. Breakthroughs in stem cell research conducted at NYU can be instantaneously populated in a research catalog and spread throughout the world. By allowing instantaneous access to the most up-to-date research, clinical researchers and organizations can provide modern medical practices towards new research.
Physicians can cross reference each others' work, find similarities in research and ask to share notes or even discuss the issue in real time through an intuitive application. This worldwide network of data can be accessed, petitioned for update, and tagged for quick and relevant referencing. This transparency ensures the best application of medical practices ultimately increasing overall healthcare and effectiveness of medical providers.
Encouraging funders to share their data and catalog it in a database based on restrictions collaboratively chosen by Information Technology professionals and clinicians alike, will allow for an online search engine that patients and clinicians can search common questions related to respective diseases. The more people know, the more likely it is that prevention of diseases will occur and overall improved healthcare.
Califf, R. M. 2013. Clinical trial data sharing and challenges to data sharing: Current and future. Paper presented at IOM Committee on Strategies for Responsible Sharing of Clinical Trial Data: Meeting One, October 22-23, Washington, DC.
Institute of Medicine of the National Academies (2015).
Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk
. Washington, D.C. : National Academies Press.
Medical Informatics for Better and Safer Health Care: Research in Action, Issue 6. June 2002. Agency for Healthcare Research and Quality, Rockville, MD.
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