Patient insights on features of an effective pharmacogenomics patient portal.
Patient insights on features of an effective pharmacogenomics patient portal.
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DOI：
10.1097/fpc.0000000000000413
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发表时间：
2020-12
影响因子：
2.6
通讯作者：
O'Donnell PH
中科院分区：
文献类型：
--
作者：
Truong TM;Lipschultz E;Schierer E;Danahey K;Ratain MJ;O'Donnell PH
我们建立了一个新的模拟药物基因组学门户网站，向患者提供药物基因组学信息和结果。利用患者焦点小组，我们随后试图了解患者对有效的药物基因组学患者门户所需特征的见解。模拟YourPGx门户网站提供了四个样本药物基因组学结果(奥美拉唑、辛伐他汀、氯吡格雷和可待因)。来自我们现有机构的前瞻性药物基因组学实施研究的患者被招募来试点模拟门户网站，然后被要求参加由两名主持人领导的焦点小组讨论。所有患者之前都进行了基因分型，但没有人直接获得自己的基因分型结果，也没有人之前使用过YourPGx门户网站。焦点小组讨论探讨了九个领域：(I)影响药物反应的因素；(Ii)对药物效果的关注；(Iii)对基因组学和药物基因组学的理解；(Iv)进行药物基因组学测试的原因；(V)用于患者教育的药物基因组信息源；(Vi)药物基因组信息源的属性；(Vii)隐私和个人药物基因组学信息的考虑；()药物基因组学信息的共享；(Ix)有效的患者门户网站的特点。患者(n=10)的中位年龄为65.5岁(38-72岁)，70%为女性，50%为高加索人/30%为黑人，60%为学士/高级学位。当被问及寻找药物基因组信息的资源时，患者倾向于首先咨询他们的提供者，然后自我教育，然后使用大学研究组织提供的信息。出现了一个关于这些来源的属性的主题，即渴望理解和信任。患者表示，通过使用符号/图形和清晰简洁的内容，药物基因组学患者门户网站的有效性得到了提高。颜色的有效使用、信息的量化、一致性和外行语言的使用是另外一些重要的方面。患者传达了支持安全电话/应用程序访问的吸引力，并表示他们希望链接到他们的电子医疗记录，以便与他们的医疗团队的不同成员共享信息。患者将供应商列为他们药物基因组信息的主要来源，但精心构建的药物基因组患者门户网站可能是有效向患者提供药物基因组信息和结果的有利工具。
We built a novel mock pharmacogenomics web portal to deliver pharmacogenomic information and results to patients. Utilizing a patient focus group, we then sought to understand patient insights on desired features of an effective pharmacogenomics patient portal. The mock YourPGx Portal delivered four sample pharmacogenomic results (omeprazole, simvastatin, clopidogrel, and codeine). Patients from our existing institutional, prospective pharmacogenomics implementation study were recruited to pilot the mock portal and then asked to participate in a focus group discussion led by two facilitators. All patients had been previously genotyped, but none had been directly provided access to their own genotyping results and none had previously used the YourPGx portal. The focus group discussion explored nine domains: (i) factors influencing drug response, (ii) concerns about drug effects, (iii) understanding of genomics and pharmacogenomics, (iv) reasons to undergo pharmacogenomic testing, (v) sources of pharmacogenomic information for patient education, (vi) attributes of pharmacogenomic sources of information, (vii) considerations about privacy and personal pharmacogenomic information, (viii) sharing of pharmacogenomic information, and (ix) features of an effective patient portal. The median age of patients (n=10) was 65.5 years old (range 38–72), 70% female, 50% Caucasian/30% Black, and 60% held a bachelor/advanced degree. When asked about resources for seeking pharmacogenomic information, patients preferred consulting their providers first, followed by self-education, then using information provided by university research organizations. A theme emerged regarding attributes of these sources, namely a desire for understandability and trust. Patients said that the effectiveness of a pharmacogenomics patient portal is improved with use of symbolisms/graphics and clear and concise content. Effective use of colors, quantifying information, consistency, and use of layperson’s language were additional important facets. Patients communicated the appeal of secured phone/app-enabled access and said that they would desire linking to their electronic medical records to allow sharing of information with different members of their healthcare team. Patients named providers as their primary source of pharmacogenomic information, but a pharmacogenomics patient portal that is carefully constructed to incorporate desired features may be a favorable tool to effectively deliver pharmacogenomic information and results to patients.