2014
DOI: 10.1186/s13073-014-0058-6
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Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding

Abstract: With the emergence of electronic medical records and patient portals, patients are increasingly able to access their health records, including laboratory reports. However, laboratory reports are usually written for clinicians rather than patients, who may not understand much of the information in the report. While several professional guidelines define the content of test reports, there are no guidelines to inform the development of a patient-friendly laboratory report. In this Opinion, we consider patient bar… Show more

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Cited by 81 publications
(102 citation statements)
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“…The literature now includes guidance from the American College of Medical Genetics and other professional societies on standardizing terminology related to interpretation of sequence variants [32] and templates for genome sequencing reports [33,34], as well as studies of patient preferences related to reporting [35,36]. Relatedly, groups in the USA and Europe have been working to achieve consensus on reporting for incidental findings [37,38].…”
Section: Discussionmentioning
confidence: 99%
“…The literature now includes guidance from the American College of Medical Genetics and other professional societies on standardizing terminology related to interpretation of sequence variants [32] and templates for genome sequencing reports [33,34], as well as studies of patient preferences related to reporting [35,36]. Relatedly, groups in the USA and Europe have been working to achieve consensus on reporting for incidental findings [37,38].…”
Section: Discussionmentioning
confidence: 99%
“…The same data were used across the different views. Using a fictional dataset to assess nonexpert comprehension of personal genomic data is a common practice in personal genomics studies [19,21,29]. …”
Section: Methodsmentioning
confidence: 99%
“…Exploring the impact of specific report designs, Haga et al [21] studied alternative formats for a text-based genetic laboratory report. Shaer et al [3] compared alternative designs of visual genetic variant reports and showed that a bubble-chart visualization is more effective than other design approaches.…”
Section: Introductionmentioning
confidence: 99%
“…This approach of using a fictional dataset to assess user comprehension is a common practice in studies of personal genomics, for example, as in Haga at al [35] and Kaufman et al [36]. We chose a fictional dataset in which sex and ethnicity do not have a specific effect.…”
Section: Methodsmentioning
confidence: 99%