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Using Ethics and User-Centered Design to Create Templates for EHR-Mediated Return of Genetic Test Results

使用道德和以用户为中心的设计来创建 EHR 介导的基因检测结果返回模板

基本信息

批准号：
9789346
负责人：
Diane M Korngiebel
金额：
$ 22.33万
依托单位：
UNIVERSITY OF WASHINGTON
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-09-20 至 2020-09-01
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9789346
关键词：
Address Affect Algorithms Attention Big Data Methods Caring Characteristics Clinic Clinical Clinical Management Collection Computer software Counseling Data Data Collection Decision Making Electronic Health Record Elements Enrollment Ensure Ethics Evaluation Family Practice Genetic Genetic screening method Genomic medicine Genomics Geography Goals Government Health Health Insurance Portability and Accountability Act Health system Healthcare Healthcare Systems Hereditary hemochromatosis Hospitals Hour Informatics Interview Investigation Laboratories Link Mediating Medical Genetics Medical center Medicine Methodology Methods Minority Negative Finding Neighborhoods Participant Patients Persons Pharmacogenomics Population Heterogeneity Process Provider Regulation Reporting Research Role Sampling Severities Software Design System Technology Test Result Time Underrepresented Groups Underrepresented Populations Universities Washington Work base clinical decision support cognitive interview colon cancer risk empowerment experience genetic information health care delivery health information technology health record improved laptop non-genetic patient engagement patient oriented patient population patient portal precision medicine preference programs prospective prototype public health relevance recruit smartphone Application success user centered design

项目摘要

PROJECT SUMMARY/ABSTRACT Patient engagement is critical for implementation of the genomic component of precision medicine—with care taken to include the perspectives and needs of patients. Yet many patients may experience significant barriers to understanding genetic information and/or using the electronic patient portals that many health systems are using to meet the terms of meaningful use related to the return of laboratory and test results. Although the return of genetic results and patient portal use have each received considerable attention, there have been few studies concerning the return of genetic test results via patient portals—even as more test results are made available to patients electronically. The success of precision medicine relies not only on algorithms behind clinical decision support and “Big Data” analytics but also on the activated patient: the patient who receives health-related information and is motivated and supported to act upon it. Prospective attention to practical and ethical concerns will help to ensure that patient perspectives are taken into account as developing technology is prepared for clinical deployment. The goal of the project is to define patient and key stakeholder needs, including those of patients from underrepresented populations, concerning the acceptability of receiving genetic test results electronically via a patient portal. The study will take place in the University of Washington Medicine (UW Medicine) system, which provides care for a diverse patient population in western Washington State through its network of hospital- and neighborhood-based clinics and uses Epic software's Electronic Health Record patient portal module. Specifically, the proposed investigation will: (1) explore with patients who have received genetic test results and non-genetic test results electronically their experience receiving those results and their views on their electronic return and how genetic results return differs, or does not differ, from non-genetic results; (2) expand the understanding of return of results thresholds by exploring with patient portal users who have received genetic test results how electronic return affects return thresholds and the nuances and challenges of presenting information for positive and negative results; and (3) following User-Centered Design principles, conduct cognitive interviews with portal users and non-users about the acceptability and ease of use of electronic return of results prototypes created using data from (1) and (2) with template options supporting use within and without the UW Medicine system. The proposed R21 exploratory research will provide preliminary data on patient perspectives across diverse populations on the use of patient portals to return genetic results electronically, including important work around thresholds for determining results that are appropriate for electronic delivery and developing report templates whose content is readily comprehensible and supports patient empowerment and enhances their engagement in their own health.

项目总结/文摘