Committee on Clinical Pharmacology and Pharmacogenomics.
Center for Personalized Therapeutics.
Pharmacogenet Genomics. 2020 Dec;30(9):191-200. doi: 10.1097/FPC.0000000000000413.
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: (1) factors influencing drug response, (2) concerns about drug effects, (3) understanding of genomics and pharmacogenomics, (4) reasons to undergo pharmacogenomic testing, (5) sources of pharmacogenomic information for patient education, (6) attributes of pharmacogenomic sources of information, (7) considerations about privacy and personal pharmacogenomic information, (8) sharing of pharmacogenomic information, and (9) 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.
我们构建了一个新颖的模拟药物基因组学门户网站，以向患者提供药物基因组学信息和结果。我们利用患者焦点小组，旨在了解患者对有效药物基因组学患者门户的期望特征。
模拟 YourPGx 门户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）。我们从现有的机构前瞻性药物基因组学实施研究中招募了患者来试用模拟门户，然后要求他们参加由两位主持人领导的焦点小组讨论。所有患者都已进行了基因分型，但均未直接提供自己的基因分型结果，也未使用过 YourPGx 门户。焦点小组讨论探讨了九个领域：（1）影响药物反应的因素，（2）对药物作用的担忧，（3）对基因组学和药物基因组学的理解，（4）进行药物基因组学检测的原因，（5）患者教育的药物基因组学信息来源，（6）药物基因组学信息来源的属性，（7）关于隐私和个人药物基因组学信息的考虑，（8）药物基因组学信息的共享，以及（9）有效患者门户的特征。
患者（n=10）的中位年龄为 65.5 岁（范围 38-72），70%为女性，50%为白种人/30%为黑人，60%拥有学士/高级学位。当被问及寻求药物基因组学信息的资源时，患者首选咨询他们的提供者，其次是自我教育，然后是使用大学研究组织提供的信息。出现了一个关于这些来源属性的主题，即对可理解性和信任的渴望。患者表示，使用符号/图形和清晰简洁的内容可以提高药物基因组学患者门户的有效性。有效使用颜色、量化信息、一致性和使用通俗易懂的语言是另外重要的方面。患者传达了对安全电话/应用程序启用访问的吸引力，并表示他们希望将其链接到他们的电子病历，以便与他们的医疗团队的不同成员共享信息。
患者将提供者视为其药物基因组学信息的主要来源，但精心构建的药物基因组学患者门户可能是向患者有效传递药物基因组学信息和结果的有利工具。
