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Enhancing genomic laboratory reports to enhance communication and empower patients
Investigator (PI): Williams, Marc
Performing Organization (PO): (Current): Geisinger Health System, Genomic Medicine Institute / (800) 275-6401
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2013
Final Year: 2018
Record Source/Award ID: PCORI/CD-1304-6987
Funding: Total Award Amount: $1,486,747
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Most rare genetic disorders are chronic and impact patients and their families for life. The challenge for patients, families, and their providers is having ready access to the information that is necessary for appropriate management and coordination of care. Non-genetic providers are often not comfortable managing genetic disease. In most cases, patients have inadequate information to decide the best course of action for their disorders even though they are put in the position of having to become an expert in the condition. This issue will be more important as information from all of an individual's genes (genomic information) is used to diagnose and manage medical conditions. Currently laboratory reports only go to providers. We believe that a new type of genomic test report, tailored for patient as well as provider use, will enable patients to have access to information they can understand, allowing them to be more involved in the management of their disorders, better navigate the health care system, and make more informed decisions about their health and health care in conjunction with their providers. This approach has the potential to improve outcomes from both the patient and provider perspectives. We propose to study the research question, "Can a genomic laboratory report tailored for both providers and families of patients improve interpretation of complex results and facilitate recommended care by enhancing communication and shared decision making?" To do so, (1) we propose to use interviews and focus group with patients and providers to understand what is needed from both groups to interpret genomic information. The results will be used to develop a genomic laboratory report that can be used by both patients and providers. Providers and patients will use the draft report to see if it meets their needs and is easy to use. Their feedback will be used to improve the report; (2) we will test the new report by comparing a group of patients and providers using the new report to a group of patients and providers using the traditional report that is only viewed by the provider. Outcomes that are important to patients will be measured to see if the new report is more effective; and (3) the new report will be further improved using the information from the study in order for it to be used routinely in the care of patients with rare disorders. We expect to determine how the proposed genomic laboratory report can help providers and patients answer patient-oriented questions. By including the patient's perspective we will create a laboratory report that not only will provide test results but also will facilitate improved communication between providers and patients. Shared decision making will promote patient empowerment and trust, close the knowledge gap, and improve outcomes of importance to patients. More on this project: (1) Williams JL, Rahm AK, Stuckey H, Green J, Feldman L, Zallen DT, Bonhag M, Segal MM, Fan AL, Williams MS. Enhancing genomic laboratory reports: A qualitative analysis of provider review. Am J Med Genet A. 2016 May;170A(5):1134-41. doi: 10.1002/ajmg.a.375732016 PubMed PMID: 26842872. (2) Stuckey H, Williams JL, Fan AL, Rahm AK, Green J, Feldman L, Bonhag M, Zallen DT, Segal MM, Williams MS. Enhancing Genomic Laboratory Reports from the Patients' View: A Qualitative Analysis. Am J Med Genet A. 2015 Oct;167A(10):2238-43. doi: 10.1002/ajmg.a.37174. (3) Genetic Test Results: Putting Parents and Doctors on the Same Page--A narrative about this project team's efforts to develop and determine whether a redesigned genomic laboratory report can provide families of children with rare genetic disorders, and their doctors, the information they need for improved communication and shared decision making.
MeSH Terms:
  • Access to Information
  • Communication
  • Decision Making
  • Focus Groups
  • Genetic Diseases, Inborn /genetics
  • Genetic Testing /*methods
  • Genomics
  • Health Communication
  • Humans
  • Outcome Assessment, Health Care
  • Power, Psychological
  • Professional-Patient Relations
Country: United States
State: Pennsylvania
Zip Code: 17822
UI: 20143441
CTgovId: NCT02504502
Project Status: Completed
Record History: ('2017: Project extended to 2018.',)