An Evaluation of The Brain Health Center Data Mart: Integrating Clinical and Research Data Open Access

Hawkins, Noy (Spring 2018)

Permanent URL: https://etd.library.emory.edu/concern/etds/2514nk51b?locale=en
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Abstract

Neurocognitive disorders pertaining to Alzheimer’s dementia are recognized as one of the most important medical and social problems in the aging population world-wide. In 2013 Alzheimer’s disease was the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age ≥ 65 years. It is projected that by 2050, the number of people living with Alzheimer's disease in the United States will grow to 13.8 million which equates to nearly 1 million new cases per year (1).  The need for an innovative system that incorporates clinical and health research data is imperative.

The Emory Alzheimer’s Disease Research Center (ADRC) has a mission to improve the lives of individuals affected by Alzheimer's and other related diseases through innovative research, education, and compassionate care (2). The ADRC, in partnership with Emory’s Data Solutions Team, seeks to bring research advances into the clinic and community that will reduce the burden of Alzheimer's and related diseases through early detection and effective intervention. The implementation of a system aimed to make research more relevant and move research into practice is essential for this population. The ADRC and Data Solutions team sought to implement such a system with the Brain Health Center Data Mart. This data mart was created to provide a consistent and efficient way of identifying patient health information (clinical and research), abstracting non-discrete information, and tracking specimens. With this information available, investigators can conduct research and integrate the best research evidence into the decision-making process for patient care. A process evaluation of the Brain Health Center Data Mart was conducted to assess implementation strategies.

Five key stakeholders participated in qualitative interviews about scope management, time management, risk management, stakeholder involvement, and other lessons learned. During the interview, additional conversations pertaining to usefulness, satisfaction, and ease of use of the reporting and visualization capabilities generated by the system were elicited. System architecture and interoperability, data quality, and stakeholder engagement emerged as dominant themes reflecting the challenges experienced in the implementation process. Participants attributed the misalignment of project objectives to limited stakeholder engagement. The planning, design, and implementation of this solution as a response to past data silos provided new insight into the relationship between the system architecture and interoperability, data quality, and stakeholder engagement. This evaluation of the Brain Health Center Data Mart assesses the gaps in implementation utilizing Zachman’s Framework and The Open Group Architecture Framework to provide new insight into the alignment between IT and the business.

Table of Contents

Table of Contents

ABSTRACT. 2

INTRODUCTION.. 4

Purpose Statement 8

Hypothesis. 8

             Significant Statement 9

LITERATURE REVIEW... 10

METHODOLOGY.. 20

             Participants. 20

             Data collection. 21

             Data Analysis. 21

            Ethical Considerations. 22

RESULTS.. 23

DISCUSSION.. 28

LIMITATIONS/ RECOMMENDATIONS.. 33

REFERENCES.. 35

 

 

 

 

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