title: User-centered design of multi-gene sequencing panel reports for clinicians.
abstract: The objective of this study was to develop a high-fidelity prototype for delivering multi-gene sequencing panel (GS) reports to clinicians that simulates the user experience of a final application. The delivery and use of GS reports can occur within complex and high-paced healthcare environments. We employ a user-centered software design approach in a focus group setting in order to facilitate gathering rich contextual information from a diverse group of stakeholders potentially impacted by the delivery of GS reports relevant to two precision medicine programs at the University of Maryland Medical Center. Responses from focus group sessions were transcribed, coded and analyzed by two team members. Notification mechanisms and information resources preferred by participants from our first phase of focus groups were incorporated into scenarios and the design of a software prototype for delivering GS reports. The goal of our second phase of focus group, to gain input on the prototype software design, was accomplished through conducting task walkthroughs with GS reporting scenarios. Preferences for notification, content and consultation from genetics specialists appeared to depend upon familiarity with scenarios for ordering and delivering GS reports. Despite familiarity with some aspects of the scenarios we proposed, many of our participants agreed that they would likely seek consultation from a genetics specialist after viewing the test reports. In addition, participants offered design and content recommendations. Findings illustrated a need to support customized notification approaches, user-specific information, and access to genetics specialists with GS reports. These design principles can be incorporated into software applications that deliver GS reports. Our user-centered approach to conduct this assessment and the specific input we received from clinicians may also be relevant to others working on similar projects.
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Cutting
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States.
authors.forename: Meghan
authors.initials: M
authors.lastname: Banchero
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States.
authors.forename: Amber L
authors.initials: AL
authors.lastname: Beitelshees
authors.affiliation: Informatics Institute, School of Medicine, University of Alabama at Birmingham, Birmingham, AL, United States.
authors.forename: James J
authors.initials: JJ
authors.lastname: Cimino
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, United States.
authors.forename: Guilherme Del
authors.initials: GD
authors.lastname: Fiol
authors.affiliation: Division of Health Sciences Informatics, Johns Hopkins University School of Medicine, United States; Armstrong Institute for Patient Safety and Quality, Johns Hopkins University School of Medicine, United States; Anesthesiology and Critical Care Medicine, Johns Hopkins University School of Medicine, United States.
authors.forename: Ayse P
authors.initials: AP
authors.lastname: Gurses
authors.affiliation: University of Missouri - Kansas City, Kansas City, MO, United States; Children's Mercy Hospital, Kansas City, MO, United States.
authors.forename: Mark A
authors.initials: MA
authors.lastname: Hoffman
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States; Departments of Medicine, Pathology and Pediatrics, University of Maryland School of Medicine, Baltimore, MD, United States.
authors.forename: Linda Jo Bone
authors.initials: LJ
authors.lastname: Jeng
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, United States.
authors.forename: Kensaku
authors.initials: K
authors.lastname: Kawamoto
authors.affiliation: University of Maryland Medical Center, Baltimore, MD, United States.
authors.forename: Mark
authors.initials: M
authors.lastname: Kelemen
authors.affiliation: Columbia University and New York-Presbyterian Hospital, New York, NY, United States.
authors.forename: Harold Alan
authors.initials: HA
authors.lastname: Pincus
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States.
authors.forename: Alan R
authors.initials: AR
authors.lastname: Shuldiner
authors.affiliation: Genomic Medicine Institute, Geisinger Health System, Danville, PA, United States.
authors.forename: Marc S
authors.initials: MS
authors.lastname: Williams
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States.
authors.forename: Toni I
authors.initials: TI
authors.lastname: Pollin
authors.affiliation: Program for Personalized and Genomic Medicine, University of Maryland School of Medicine, Baltimore, MD, United States; Division of Health Sciences Informatics, Johns Hopkins University School of Medicine, United States; Division of General Internal Medicine, Johns Hopkins University School of Medicine, United States. Electronic address: overby@jhu.edu.
authors.forename: Casey Lynnette
authors.initials: CL
authors.lastname: Overby
mesh_terms: D003695:Delivery of Health Care; D017144:Focus Groups; D006801:Humans; D057285:Precision Medicine; D017422:Sequence Analysis, DNA; D012984:Software; D012985:Software Design; D014584:User-Computer Interface
keywords: Genomic medicine; Genomic sequencing; Precision medicine; Task walkthroughs; User experience research