Despite the increasing feasibility of incorporating genome sequencing into clinical care, there is little systematic knowledge concerning the benefits, concerns, and challenges health care providers (HCPs) perceive when incorporating genomic sequencing results, or whether they find the information useful in their healthcare practice. Proponents expect that genome sequencing will enhance HCPs’ abilities to prevent and treat disease by identifying genetic predispositions for preventable conditions and by improving medical decision making about treatment choices. However, questions persist about whether disclosure may harm patients because HCPs may not be trained or supported to properly incorporate genomic information into clinical care. Variation in the way genome sequencing findings are communicated to HCPs further complicates whether HCPs perceive a responsibility to act on genome sequencing findings and whether they believe clinical follow-up would be helpful or harmful. The main goal of this study is to assess the impact of disclosure of unsolicited genetic results on provider perceptions of appropriate clinical management, including both HCPs’ perceptions of clinical benefit/utility, and their perception of their responsibilities in relationship to the role of other HCPs 1-6. A secondary goal of this pilot project are to develop and test a survey of HCP that can be implemented across the Electronic Medical Records and Genomics (eMERGE) Network with future funding. The eMERGE 3 Network provides an ideal setting in which to conduct this study due to the clinical, demographic, and geographic diversity of the participant population. As part of eMERGE 3, patients are enrolled from 12 different healthcare systems, who agree to undergo genomic testing, and receive results, as well as having them be returned to their physicians. The eMERGE 3 Network is one of the first in which unsolicited genome sequencing results will be returned to HCPs on a large scale. Sites within the Network are returning results to HCPs using a variety of mechanisms (e.g., via the electronic health record [EHR], by letter). In addition, the HCPs who will receive results vary, and including a combination of primary care providers and sub-specialists at each site. These differences across sites provide a unique opportunity to study the impact of disclosing genomic sequencing results in a variety of “real-world” settings. Despite the crucial role HCPs will play in utilizing genomic results to improve patient outcomes, the parent eMERGE study does not have an aim focused on examining the impact of genomic results on HCPs. Understanding the impact of returning unsolicited results on HCPs, including how they integrate the information into clinical care, will be crucial if the overall goals of eMERGE 3 are to be achieved. Thus, this is potentially a very important project for eMERGE 3 – it provides a critical opportunity to understand how physicians respond to receiving genetic test results for their patients. While other studies, including the Clinical Sequencing Exploratory Research (CSER) Consortium, are examining the role of HCPs, this study is unique in that it offers an opportunity to study the perspectives of HCPs who have received specific genetic results that did not originate with them. While responding to medical tests ordered by another provider is a common event in healthcare, there is little, if any, information about the impact of genetic results in this context. This study will inform both the educational needs of HCPs, as well as best practices for retur
|Effective start/end date||7/1/18 → 4/30/21|
- Children's Hospital Boston (GENFD0001649709//5R01HG010004-02)
- National Human Genome Research Institute (GENFD0001649709//5R01HG010004-02)
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