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首页> 外文期刊>BMC Medical Informatics and Decision Making >Developing a patient portal for haematology patients requires involvement of all stakeholders and a customised design, tailored to the individual needs
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Developing a patient portal for haematology patients requires involvement of all stakeholders and a customised design, tailored to the individual needs

机译：开发血液学患者的患者门户需要所有利益相关者的参与和针对个人需求的定制设计

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Electronic patient portals are increasingly being implemented, also in (haemato) oncology. However, portal usage is low and depends on user and provider engagement. We explored wishes, expectations and thoughts of patients with a haematologic malignancy and their physicians with regard to the electronic patient portal. Based on insights from literature and a focus group discussion we built a 44-item questionnaire. This questionnaire was spread amongst patients with a haematologic malignancy at the outpatient clinic that was not yet exposed to patient portal facilities. Haematologists completed a questionnaire based on literature. Patients were interested in many different types of access to information and portal functionalities. However, their opinions varied about the provision of access to the portal to other people, the role of the physician, possibilities for communication via the portal and timing of access. The physicians acknowledged the relevance of the electronic patient portal, but had some worries about the patients’ autonomous information handling, organizational and technical issues. Patients frequently expressed to be open about the potential of the patient portal to orchestrate their care. Nevertheless, most physicians appreciated their supporting role towards the patient. Patients and physicians appreciated the electronic patient portal. Both groups need to be involved in further portal development to improve engagement by meeting patients’ wishes, taking into account organizational and professional issues and managing expectations for both parties. To fit various patient profiles, portal design should be flexible and individualized. Further research should focus on the perceived added value and the impact on patient related outcome measures of portals.
机译：电子患者门户也在（haemato）肿瘤学中得到越来越多的应用。但是，门户网站的使用率较低，并且取决于用户和提供者的参与程度。我们探讨了血液恶性肿瘤患者及其医生对电子患者门户网站的愿望，期望和想法。基于文献的见解和焦点小组讨论，我们构建了一项44项问卷。该调查表散布在尚未暴露于患者门诊设施的门诊诊所的血液系统恶性肿瘤患者中。血液学家根据文献填写了问卷。患者对访问信息和门户功能的许多不同类型感兴趣。但是，他们对向其他人提供门户访问权限，医生的角色，通过门户进行交流的可能性以及访问时间的看法各不相同。医师们承认电子病人门户网站的重要性，但对病人的自主信息处理，组织和技术问题有些担心。患者经常表示对患者门户组织协调其护理的潜力持开放态度。然而，大多数医生赞赏他们对患者的支持作用。病人和医生都很欣赏电子病人门户网站。两组都需要参与进一步的门户开发，以通过满足患者的意愿，考虑组织和专业问题并管理双方的期望来提高参与度。为了适应各种患者情况，门户设计应灵活且个性化。进一步的研究应侧重于感知到的附加值以及对门户网站与患者相关的结局指标的影响。

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