Chu Dominic, Lessard David, Laymouna Moustafa A, Engler Kim, Schuster Tibor, Ma Yuanchao, Kronfli Nadine, Routy Jean-Pierre, Hijal Tarek, Lacombe Karine, Sheehan Nancy, Rougier Hayette, Lebouché Bertrand
Department of Family Medicine, McGill University, Montreal, QC H3S 1Z1, Canada.
Canadian Institutes of Health Research Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials in HIV, Montreal, QC H4A 3J1, Canada.
J Pers Med. 2022 Feb 19;12(2):314. doi: 10.3390/jpm12020314.
Like other chronic viral illnesses, HIV infection necessitates consistent self-management and adherence to care and treatment, which in turn relies on optimal collaboration between patients and healthcare professionals (HCPs), including physicians, nurses, pharmacists, and clinical care coordinators. By providing people living with HIV (PLHIV) with access to their personal health information, educational material, and a communication channel with HCPs, a tailored patient portal could support their engagement in care. Our team intends to implement a patient portal in HIV-specialized clinics in Canada and France. We sought to understand the perceived risks and benefits among PLHIV and HCPs of patient portal use in HIV clinical care.
This qualitative study recruited PLHIV and HIV-specialized HCPs, through maximum variation sampling and purposeful sampling, respectively. Semi-structured focus group discussions (FGDs) were held separately with PLHIV and HCPs between August 2019 and January 2020. FGDs were recorded, transcribed, coded using NVivo 12 software, and analyzed using content analysis.
A total of twenty-eight PLHIV participated in four FGDs, and thirty-one HCPs participated in six FGDs. PLHIV included eighteen men, nine women, and one person identifying as other; while, HCPs included ten men, twenty women, and one person identifying as other. A multi-disciplinary team of HCPs were included, involving physicians, nurses, pharmacists, social workers, and clinical coordinators. Participants identified five potential risks: (1) breach of confidentiality, (2) stress or uncertainty, (3) contribution to the digital divide, (4) dehumanization of care, and (5) increase in HCPs' workload. They also highlighted four main benefits of using a patient portal: (1) improvement in HIV self-management, (2) facilitation of patient visits, (3) responsiveness to patient preferences, and (4) fulfillment of current or evolving patient needs.
PLHIV and HCPs identified both risks and benefits of using a patient portal in HIV care. By engaging stakeholders and understanding their perspectives, the configuration of a patient portal can be optimized for end-users and concerns may be mitigated during its implementation.
与其他慢性病毒性疾病一样，艾滋病毒感染需要持续的自我管理以及坚持护理和治疗，而这又依赖于患者与医疗保健专业人员（包括医生、护士、药剂师和临床护理协调员）之间的最佳协作。通过为艾滋病毒感染者（PLHIV）提供获取其个人健康信息、教育材料以及与医疗保健专业人员沟通渠道的途径，一个量身定制的患者门户网站可以支持他们参与护理。我们的团队打算在加拿大和法国的艾滋病毒专科诊所实施一个患者门户网站。我们试图了解艾滋病毒感染者和医疗保健专业人员在艾滋病毒临床护理中使用患者门户网站所感知到的风险和益处。
这项定性研究分别通过最大变异抽样和目的抽样招募了艾滋病毒感染者和艾滋病毒专科医疗保健专业人员。2019年8月至2020年1月期间，分别与艾滋病毒感染者和医疗保健专业人员举行了半结构化焦点小组讨论（FGD）。FGD进行了录音、转录，使用NVivo 12软件进行编码，并采用内容分析法进行分析。
共有28名艾滋病毒感染者参加了4次FGD，31名医疗保健专业人员参加了6次FGD。艾滋病毒感染者包括18名男性、9名女性和1名身份为其他的人；而医疗保健专业人员包括10名男性、20名女性和1名身份为其他的人。参与的医疗保健专业人员组成了一个多学科团队，包括医生、护士、药剂师、社会工作者和临床协调员。参与者确定了五个潜在风险：（1）保密性被侵犯，（2）压力或不确定性，（3）加剧数字鸿沟，（4）护理非人性化，（5）医疗保健专业人员工作量增加。他们还强调了使用患者门户网站的四个主要益处：（1）改善艾滋病毒自我管理，（2）便利患者就诊，（3）响应患者偏好，（4）满足当前或不断变化的患者需求。
艾滋病毒感染者和医疗保健专业人员确定了在艾滋病毒护理中使用患者门户网站的风险和益处。通过让利益相关者参与并了解他们的观点，可以为最终用户优化患者门户网站的配置，并在其实施过程中减轻担忧。
