Erasmus School of Health Policy & Management, Erasmus University, Rotterdam, The Netherlands.
Clinical Informatics, Eindhoven University of Technology, Eindhoven, The Netherlands.
Health Expect. 2024 Jun;27(3):e14101. doi: 10.1111/hex.14101.
The WHO advocates patient and public involvement as an ethical imperative, due to the value of the lived experience of patients. A deeper understanding of the shared meanings and underlying beliefs of healthcare professionals and managers for and against including patients in care pathway development.
To explore the considerations of healthcare professionals and managers on the involvement of patients and public in care pathway development.
In a medical rehabilitation centre we conducted a single case study that was part of a 2-year action research programme on blended care pathway development. Following 14 semistructured interviews with healthcare professionals and managers, we analysed their discourses on the value of patient involvement as well as the potential threats and opportunities.
We identified four discourses. Patient as expert frames involvement as relevant, as adding new perspectives and as required to fully understand the patient's needs. Skills and representation is based on the construct that obtaining valuable insights from patients requires certain skills and competences. Self-protection focusses on personal, interprofessional objections to patient involvement. Professional knows best reveals expertise-related reasons for avoiding or postponing involvement.
These discourses explain why patient and public involvement in care pathway development is sometimes postponed, limited in scope and level of participation, and/or avoided. The following strategies might minimise the paralysing effect of these discourses: strengthen the capabilities of all stakeholders involved; use a mix of complementary techniques to gain involvement in distinct phases of care pathway development; and create/facilitate a safe environment. Put together, these strategies would foster ongoing, reciprocal learning that could enhance patient involvement.
This study belonged to an action research programme on blended care pathway development (developing an integrated, coordinated patient care plan that combines remote, digital telehealth applications, self-management tools and face-to-face care). Multidisciplinary teams took a quality collaborative approach to quality improvement (considering patients as stakeholders) to develop 11 blended care pathways. Although professionals and managers were instructed to invite patients onto their teams and to attend care pathway design workshops, few teams (3/11) actually did. Unravelling why this happened will help improve patient and public involvement in care pathway development.
世界卫生组织提倡将患者和公众的参与作为一项道德要求，因为患者的生活经验具有价值。我们需要更深入地了解医疗保健专业人员和管理人员对将患者纳入护理路径制定的正反两方面的共同意义和潜在信念。
探讨医疗保健专业人员和管理人员对患者和公众参与护理路径制定的考虑因素。
在一家医疗康复中心，我们进行了一项单案例研究，该研究是为期两年的混合护理路径开发行动研究计划的一部分。对医疗保健专业人员和管理人员进行了 14 次半结构化访谈后，我们分析了他们对患者参与的价值以及潜在威胁和机会的论述。
我们确定了四个论述。患者作为专家框架将参与视为相关的，因为可以增加新的视角并充分了解患者的需求。技能和代表性基于这样一种观念，即从患者那里获得有价值的见解需要某些技能和能力。自我保护则侧重于个人、跨专业对患者参与的反对。专业人士最了解则揭示了避免或推迟参与的与专业知识相关的原因。
这些论述解释了为什么患者和公众参与护理路径开发有时会被推迟、范围和参与程度有限，以及/或者被避免。以下策略可能会最小化这些论述的瘫痪效应：增强所有相关利益攸关方的能力；在护理路径开发的不同阶段使用混合互补技术来获得参与；并创建/促进安全的环境。这些策略结合在一起，可以促进持续的、互惠的学习，从而增强患者的参与度。
这项研究属于混合护理路径开发的行动研究计划（开发一种综合的、协调的患者护理计划，结合远程、数字远程医疗应用、自我管理工具和面对面护理）。多学科团队采取了质量协作的方法来进行质量改进（将患者视为利益相关者），以开发 11 条混合护理路径。尽管专业人员和管理人员被指示邀请患者加入他们的团队并参加护理路径设计研讨会，但很少有团队（11 个中的 3 个）真正这样做。揭示为什么会发生这种情况将有助于改善患者和公众在护理路径开发中的参与度。
