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患者设计:将患者纳入医疗保健设计中的重要性。

Patient Design: The Importance of Including Patients in Designing Health Care.

机构信息

The Medical Futurist Institute, Budapest, Hungary.

Department of Behavioural Sciences, Semmelweis University, Budapest, Hungary.

出版信息

J Med Internet Res. 2022 Aug 31;24(8):e39178. doi: 10.2196/39178.

Abstract

A paradigm shift is underway in the patient-clinician relationship, driven by irreversible changes in information access, yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly even though we call it "patient centered." Humanity endured centuries in which even doctors had little idea what the patient's problem really was. Science slowly solved that, and for a century, only doctors could know what was worth knowing. Today, the rise of the internet and digital health has led to the end of that era. We are already witnessing early signs of the era of participatory health: genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. This may feel like a threat to the physician's sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making. In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra. We argue that to drive this paradigm change fully into existence, we need to shift "patient centricity" from a relatively passive process, driven by industry needs, into a far more active, collaborative process driven by both parties' needs and preferences. To build this new world of practice and workflow, we simply must engage with patients as true partners. To achieve medicine's new potential, it must be optimized around the wants and priorities of the ultimate stakeholder-the party that has the most at stake in how it all plays out: the patient. Patient design is the approach that can make it happen.

摘要

医患关系正在发生范式转变,这是由信息获取方式的不可逆转变化所驱动的。然而,即使我们称之为“以患者为中心”,但培训医生、提供医疗服务和设计医疗服务的模式并没有发生重大变化。在人类历史的很长一段时间里,即使是医生也对患者的问题知之甚少。科学慢慢地解决了这个问题,一个世纪以来,只有医生才能知道什么是值得知道的。如今,互联网和数字医疗的兴起已经结束了那个时代。我们已经开始看到参与式健康的早期迹象:真正有能力的人根据自己的优先事项过自己的生活并管理自己的健康,根据需要与医生合作和协商。这可能对医生神圣的角色构成威胁,但这并不比医生采用知情同意和共同决策时更甚。在 21 世纪 10 年代,许多制药、医疗和医疗保健公司开始将以患者为中心作为口号。我们认为,要充分实现这种范式转变,我们需要将“以患者为中心”从一个相对被动的过程(由行业需求驱动)转变为一个更积极、协作的过程,由双方的需求和偏好驱动。为了构建这种新的实践和工作流程世界,我们必须将患者作为真正的合作伙伴来参与。为了实现医学的新潜力,它必须围绕最终利益相关者的需求和优先事项进行优化——即对所有结果最相关的一方:患者。患者设计是实现这一目标的方法。

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