Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports

Autor: Johanna Okerlund, Martina Balestra, Orit Shaer, Madeleine Ball, Elizabeth Stowell, Oded Nov, Claire Schlenker, Laura Ascher, Joanna Bi
Rok vydání: 2015
Předmět:
Adult
Male
020205 medical informatics
Bubble chart
Psychological intervention
Health Informatics
02 engineering and technology
Disclosure
lcsh:Computer applications to medicine. Medical informatics
genetic testing
World Wide Web
Young Adult
Direct-To-Consumer Screening and Testing
Surveys and Questionnaires
0202 electrical engineering
electronic engineering
information engineering
interactive visualizations
Medicine
Humans
Aged
Communication design
Aged
80 and over
Health Services Needs and Demand
Original Paper
business.industry
lcsh:Public aspects of medicine
direct-to-consumer genetic testing
lcsh:RA1-1270
020207 software engineering
Genomics
Middle Aged
Visualization
Personal Genome Project
Comprehension
lcsh:R858-859.7
The Internet
Female
Perception
personal electronic health records
business
Personal genomics
Zdroj: Journal of Medical Internet Research
Journal of Medical Internet Research, Vol 17, Iss 6, p e146 (2015)
ISSN: 1438-8871
Popis: BackgroundIn recent years, people who sought direct-to-consumer genetic testing services have been increasingly confronted with an unprecedented amount of personal genomic information, which influences their decisions, emotional state, and well-being. However, these users of direct-to-consumer genetic services, who vary in their education and interests, frequently have little relevant experience or tools for understanding, reasoning about, and interacting with their personal genomic data. Online interactive techniques can play a central role in making personal genomic data useful for these users. ObjectiveWe sought to (1) identify the needs of diverse users as they make sense of their personal genomic data, (2) consequently develop effective interactive visualizations of genomic trait data to address these users’ needs, and (3) evaluate the effectiveness of the developed visualizations in facilitating comprehension. MethodsThe first two user studies, conducted with 63 volunteers in the Personal Genome Project and with 36 personal genomic users who participated in a design workshop, respectively, employed surveys and interviews to identify the needs and expectations of diverse users. Building on the two initial studies, the third study was conducted with 730 Amazon Mechanical Turk users and employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension. ResultsThe first two studies identified searching, comparing, sharing, and organizing data as fundamental to users’ understanding of personal genomic data. The third study demonstrated that interactive and visual design interventions could improve the understandability of personal genomic reports for consumers. In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores. These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information. ConclusionsDrawing on multiple research methods and populations, the findings of the studies reported in this paper offer deep understanding of users’ needs and practices, and demonstrate that interactive online design interventions can improve the understandability of personal genomic reports for consumers. We discuss implications for designers and researchers.
Databáze: OpenAIRE
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