Erica Sood1,2,3,4, Tim Wysocki1, Melissa A Alderfer1,4, Karen Aroian5, Jennifer Christofferson1, Allison Karpyn6, Anne E Kazak1,4, Jessica Pierce1,7,8. 1. Center for Healthcare Delivery Science, Nemours Children's Health System. 2. Nemours Cardiac Center, Nemours/Alfred I. duPont Hospital for Children. 3. Division of Behavioral Health, Department of Pediatrics, Nemours/Alfred I. duPont Hospital for Children. 4. Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University. 5. University of Central Florida, College of Nursing. 6. Center for Research in Education and Social Policy, Department of Human Development and Family Sciences, University of Delaware. 7. Division of Behavioral Health, Department of Pediatrics, Nemours Children's Hospital. 8. Department of Pediatrics, College of Medicine, University of Central Florida.
Abstract
OBJECTIVE: To describe a novel, five-phase approach to collecting qualitative data from hard-to-reach populations using crowdsourcing methods. METHODS: Drawing from experiences across recent studies with type 1 diabetes and congenital heart disease stakeholders, we describe five phases of crowdsourcing methodology, an innovative approach to conducting qualitative research within an online environment, and discuss relevant practical and ethical issues. RESULTS: Phases of crowdsourcing methodology are: (I) Preparing; (II) Forming Crowds; (III) Collecting Crowdsourced Data; (IV) Coding and Analyzing Crowdsourced Data; and (V) Generating and Disseminating Findings. Iterative feedback from stakeholders is obtained in all five phases. Practical and ethical issues include accessing diverse stakeholders, emotional engagement of crowd participants, responsiveness and transparency of crowdsourcing methodology, and limited personal contact with crowd participants. CONCLUSIONS: Crowdsourcing is an innovative, efficient, feasible, and timely approach to engaging hard-to-reach populations in qualitative research.
OBJECTIVE: To describe a novel, five-phase approach to collecting qualitative data from hard-to-reach populations using crowdsourcing methods. METHODS: Drawing from experiences across recent studies with type 1 diabetes and congenital heart disease stakeholders, we describe five phases of crowdsourcing methodology, an innovative approach to conducting qualitative research within an online environment, and discuss relevant practical and ethical issues. RESULTS: Phases of crowdsourcing methodology are: (I) Preparing; (II) Forming Crowds; (III) Collecting Crowdsourced Data; (IV) Coding and Analyzing Crowdsourced Data; and (V) Generating and Disseminating Findings. Iterative feedback from stakeholders is obtained in all five phases. Practical and ethical issues include accessing diverse stakeholders, emotional engagement of crowd participants, responsiveness and transparency of crowdsourcing methodology, and limited personal contact with crowd participants. CONCLUSIONS: Crowdsourcing is an innovative, efficient, feasible, and timely approach to engaging hard-to-reach populations in qualitative research.
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