228826 Effective IT Support for the Generation of Research Results to Participants: Lessons Learned from the Jackson Heart Study

Monday, November 8, 2010

Daniel Sarpong, PhD , RTRN - Data and Technology Coordinating Center, Jackson State University, Jackson, MS
Pramod Anugu, MS, MPH , Jackson Heart Study Coordinating Center, Jackson State University, Jackson, MS
Gregory Wilson, MA , Jackson Heart Study Coordinating Center, Jackson State Univerisity, Jackson, MS
Kiana Robinson, MPH , Jackson Heart Study Coordinating Center, Jackson State Univerisity, Jackson, MS
Mary E. Crump, RN, MSN, MPH, CRRN, CCM, DrPH(s) , Department of Medicine/UMMC, Jackson Heart Study, Jackson, MS
Clifton C. Addison, PhD , Jackson Heart Study/Project Health, Jackson State University, Jackson, MS
Background: There is growing literature supporting the need to share study results of clinical relevance to all study participants irrespective of type of study. However, to prepare study results for participants study investigators require dedicated resources, commitment and customization of the reports. Given the current trend of sharing results with participants and the increasing demands of participants to know their results, the primary focus of this presentation is to share the lessons learned in generating results reports for JHS participants since the baseline examination (2000-2004). JHS is the largest single-site observational cohort study designed to assess the etiology and progression of CVD in African Americans. Methods: Using Crystal Reports, the JHS Data Coordinating Center developed a reporting module that interfaced with the Database Management System (DMS), designed using ClinTrialTM, to produce customized results report. Results: The timeframe for preparing and mailing of results reports for participants was decreased from 2-3 months to 5-6 weeks from clinic visit date considering a waiting time of 4 weeks for the transfer of laboratory and processed imaging data from the JHS Central Laboratory and Reading Centers. Also, the person hours dedicated to preparing these results was significantly reduced by 50-55% after the Reading Centers' data were integrated with the clinic visit data in the JHS DMS. Discussion: The use of web applications to automate the process of generating clinical results reports for research participants is efficient and effective. It saves duplication in datasets which are challenging to maintain and reduces a potentially labor-intensive activity.

Learning Areas:
Advocacy for health and health education
Communication and informatics
Other professions or practice related to public health
Public health or related research
Systems thinking models (conceptual and theoretical models), applications related to public health

Learning Objectives:
1. To demonstrate the effective use of information technology tools to customize research results reports. 2. To describe of the importance of sharing customize research results reports with all study participants

Keywords: Reporting, Information Technology

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I was instrument in developing the project articulated in the abstract and was the lead on the preparation of the abstract.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.