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.

Creating genetic reports that are understood by nonspecialists: a case study

“…4,[15][16][17] Genomic reports are especially challenging due to lack of standardization 18,19 and the complexity and uncertainty of the information involved. 20 There have been attempts to make the interpretation of laboratory reports clearer to nonspecialist clinicians, 16,[21][22][23][24][25] but far fewer to make them clearer to patients. In 2014, Haga et al 2 noted that "only one study has described efforts to develop a patient-friendly pathology report" (p. 4).…”

“…With rare exceptions, 25,28 user-centered design is not generally used as a guiding framework in the context of noncommercial genetic report development. Our aim was to determine whether such a process could be used to efficiently produce genetic report templates suitable for implementation.…”

Designing Emails Aimed at Increasing Family Physicians� Use of a Web-Based Audit and Feedback Tool to Improve Cancer Screening Rates: Cocreation Process (Preprint)

“…Co-creation methods, in which members of the intended audience help solve a problem, have demonstrated success in the development of health interventions [13][14]. Active SAR users (i.e., adopters) are well positioned to articulate the benefits of using the SAR and craft persuasive content that may convince their non-adopter counterparts to access their SAR.…”

A Review of Recent Advances in Translational Bioinformatics: Bridges from Biology to Medicine

“…The substantial learnings from previously established programs, such as the Electronic Medical Record and Genomics (eMERGE) network on approaches to integrate genomic variant information within electronic medical records, will be incorporated into PMI protocols [31,32]. Researchers are also working on integrative models based on current knowledge of genomics and epigenomics and the relevant biochemistry and cellular-tissue physiology to predict how to obtain data from these very large cohorts.…”