User Preferences and Needs for Health Data Collection Using Research Electronic Data Capture: Survey Study

Abstract

Background: Self-administered online questionnaires are widely used to collect health data from patients and clinical research participants. Research Electronic Data Capture (REDCap) is a global, secure web application for building and managing electronic data capture. Unfortunately, stakeholder needs and preferences of electronic data collection via REDCap have rarely been studied. Objective:The aim of this study is to survey REDCap researchers and administrators to assess their experience with REDCap, especially their perspectives on advantages, challenges, and suggestions for enhancement of REDCap as a data collection tool. Methods:We conducted a semi-structured survey with representatives of REDCap member organizations in the United States. The survey captured information on respondent demographics, quality of patient-reported data collected via REDCap, patient experience of data collection with REDCap, and open-ended questions focusing on advantages, challenges, and suggestions to enhance REDCap's data collection experience. Descriptive and inferential analysis measures were used to analyze quantitative data. Thematic analysis was used to analyze open-ended responses focusing on advantages, disadvantages, and enhancements in data collection experience.Results: A total of 208 respondents completed the survey. Respondents strongly agreed or agreed that the data collected via REDCap is accurate (n=188; 90.8%), complete (n=166; 80.2%) and reliable (n=182; 87.9%). More than half of respondents agreed that patients find REDCap easy to use (53.6%), could successfully complete tasks without help (51.2%), and could do so in a timely manner (51.2%). Thematic analysis of open-ended responses yielded 8 major themes including: survey development, user experience, survey distribution, survey results, training and support, technology, security, and platform features. The user experience category included more than half of the advantage codes (51.7%, 307 codes); meanwhile, respondents reported higher challenges in survey development (32.8%; 169 codes), also suggesting the highest enhancement suggestions for the category (36.9%, 162 codes). Conclusions:Respondents indicated that REDCap is a valued, low-cost, secure resource for clinical research data collection. REDCap's data collection experience was generally positive among clinical research and care staff members and patients. Although, with the advancements in data collection technologies and availability of modern, intuitive, and mobile-friendly data collection interfaces, there is a critical opportunity to enhance the REDCap experience to meet the needs of researchers and patients. Clinical