September Core Spotlight: Survey and Data Management
In this DF/HCC News Spotlight Edition, we present the Survey and Data Management Core (SDMC). The Core’s experienced staff provides a full range of survey, qualitative and data management services to support investigators conducting observational, behavioral and clinical outcomes studies. Housed within the Division of Population Sciences at Dana-Farber Cancer Institute, SDMC staff utilize evidence-based methods and contemporary best practices for survey data collection, qualitative data collection, database design, and participant management systems. The Core has extensive experience working with underserved patient and community populations in both pediatric and adult settings.
Tailored to the individual needs of each project, Core staff provide a full range of consultation and technical services to support data collection and management needs, from initial conception to final analysis. Many of the projects undertaken by the Core involve multiple services. Core staff manage the coordination of services to ensure the successful survey operations and qualitative data collection while minimizing demands on the investigator and his or her project team.
The Core recently added two new staff members, Dan Gundersen, PhD, Senior Survey Methodologist, and Anna Revette, PhD, Qualitative Research Manager.
Dan brings an expertise in survey research design and analysis as well as in statistical/psychometric methods related to survey research with a particular expertise in designing surveys for mobile and web-based modes, evaluating data quality and ensuring measurement equivalence across data collection modes.
Anna is a Sociologist who has extensive experience in qualitative research and has worked both independently and collaboratively on a wide range of projects focused on a variety of disciplines and methodologies. Anna is proficient in Spanish which allows the Core to conduct focus groups and interviews in Spanish.
Having Dan and Anna join the Survey and Data Management Core provides expertise in mixed methods research that is a unique and valuable resource for DF/HCC investigators.
- Development of research protocols
- Psychometric assessment of instruments and analysis of complex survey data
- Design of survey instruments, questionnaires and interview guides
- Cognitive testing of new instruments
- Mail and web-based surveys, response tracking and data management
- Focus groups, key informant interviews, qualitative data coding and analysis
- Participant tracking/database/project management systems
- Medical record abstraction
- Identification of potential subjects and sample frames
- DatStat’s DFCI Enterprise Site License
- Illume Survey Software - allows for efficient and secure survey data collection via the Internet
- Discovery Participant Management Software - Configurable, web-based software for managing the full context of a study
- REDCap – Core staff are available to program surveys and databases in REDCap
- NVivo - qualitative data analysis software for in-depth analysis of small and large volumes of data
The Core also offers training and oversight of project staff involved in data collection, data entry, quality assurance, reporting and other tasks related to the implementation of both intervention and observational research involving survey data collection.
Study: FIRST and Money Health Connection projects utilized qualitative and quantitative methods to address key questions concerning the definition and measurement of financial well-being (FWB) in research, the identification of the specific components of FWB associated with health outcome and the evaluation of how neighborhood environments influences the health and health behaviors of residents.
Contribution of the Core: The SDMC conducted focus groups and cognitive interviews to refine the conceptual model and pool of items to measure FWB, coded and analyzed the qualitative data, formatted, programmed and fielded the web-based survey, oversaw data collection, quality control and sample management, performed psychometric assessment of the FWB scales and assistance with manuscript preparation.
Publication: Tucker-Seeley, R.D.; Duarte, C.; Miller, M.; Gagne, J. Household financial well-being and navigating cancer care: A qualitative study of conceptualizing financial well-being among social workers and resource specialists. Psycho-Oncology, Volume 24, Issue S2, July 2015: 218
Study: Sequencing to Guide the Care of Cancer Patients (CanSeq) project was designed to develop a paradigm for the integration of germline and somatic genome sequencing into the care of cancer patients. It was comprised of three sub-projects related to the three specific study aims: 1.) implement a production scale platform for whole exome sequencing from archival (FFPE) material; 2.) determine the clinical impact of somatic and germline whole exome sequencing in cancer patients; and, 3.) describe the impact of information derived from somatic and germline whole exome sequencing on cancer patients.
Contribution of the Core: The Core guided the selection of instruments and development of pre- and post-sequencing patient and provider surveys, implementation of the surveys, data entry, management, quality control, and qualitative interviews, coding and analysis of patient and provider data for Project 3. Responding to a need for a database and project management system, the Core took the lead role in developing a process tracking database system for the overall CanSeq project. The SDMC worked with study staff to develop detailed workflows and standard operating procedures to coordinate study tasks and communication across DFCI, BWH and the Broad Institute. Core staff designed and programmed over 130 data collection, workflow automation and email notification forms, coordinated the system configuration in collaboration with the CanSeq Project Manager tested and launched the system.
Publication: Ghazani AA, Oliver NM, St Pierre JP, Garofalo A, Rainville IR, Hiller E, Treacy DJ, Rojas-Rudilla V, Wood S, Bair E, Parello M, Huang F, Giannakis M, Wilson FH, Stover EH, Corsello SM, Nguyen T, Rana HQ, Church AJ, Lowenstein C, Cibulskis C, Amin-Mansour A, Heng J, Brais L, Santos A, Bauer P, Waldron A, Lo P, Gorman M, Lydon CA, Welch M, McNamara P, Gabriel S, Sholl LM, Lindeman NI, Garber JE, Joffe S, Van Allen EM, Gray SW, Ja Nne PA, Garraway LA, Wagle N. Assigning clinical meaning to somatic and germ-line whole-exome sequencing data in a prospective cancer precision medicine study. Genet Med 2017 Jul;19(7):787-795. Epub 2017 Jan 26.
Study: Validation of theQuality of Life in Myelodysplasia Scale (QUALMS), was a multinational, multisite study designed to validate a new 38-item MDS-specific quality of life measure developed with the structured input of MDS patients, caregivers, providers and quality of life (QOL) experts. The study involved the administration of the QUALMS at two time points to a large and diverse cohort of MDS patients drawn from five participating institutions in the USA, Canada and Europe.
Contribution of the Core: The SDMC Senior Survey Methodologist provided psychometric direction for the validation of the disease-specific QOL measure for patients with myelodysplasia including detailed psychometric assessments of the scale’s properties through analyses of its internal consistency, test-retest reliability, responsiveness, construct validity and predictive validity. The resulting validated QUALMS is a new and powerful tool to assess QOL for MDS patients.
Publication: Abel GA, Efficace F, Buckstein RJ, Tinsley S, Jurcic JG, Martins Y, Steensma DP, Watts CD, Raza A, Lee SJ, List AF, Klaassen RJ. Prospective international validation of the Quality of Life in Myelodysplasia Scale (QUALMS). Haematologica 2016. Jun;101(6):781-8. Epub 2016 Mar 4.
For more information regarding the Survey and Data Management Core, visit the core website.