Integrating patient voices in digital health research design: The ProPacient Decalogue

IF 2.9 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Patient Education and Counseling Pub Date : 2025-05-17 DOI:10.1016/j.pec.2025.109180

Oriol Yuguero , Irene Lapuente , Jordi Pacheco , Gloria Gálvez , Marc de San Pedro , Marta Aymerich

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引用次数: 0

Abstract

Objectives

To integrate patient perspectives into the design of digital health research through a participatory process and to develop a set of guiding principles for inclusive, ethical, and patient-centered digital research.

Methods

The Catalonia Patient Advisory Council (CCPC) coordinated a co-creation process involving 70 individuals representing ten diverse health conditions. Five sessions—four in person and one online—were conducted using design thinking and visual methodologies to facilitate inclusive dialogue. Participants identified needs and preferences related to digital health participation, which were synthesized into the ProPacient Decalogue.

Results

The participatory process revealed key factors that support meaningful patient engagement, including early involvement, trust-building, adaptive formats, and recognition of lived experience. Participants highlighted the importance of clear communication, digital accessibility, and inclusive design. The resulting ProPacient Decalogue provides ten actionable principles to guide future digital health research.

Conclusions

Patient involvement enhances the quality, relevance, and equity of digital health research. The ProPacient approach offers a replicable model for integrating patient voices and fostering participatory research.

Practice implications

Researchers and policymakers can use the ProPacient Decalogue to improve patient engagement across all phases of digital health research. Applying its principles may reduce the digital divide, strengthen user-centered innovation, and increase trust in digital health interventions

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在数字健康研究设计中整合患者的声音：propacent十诫

目的通过参与式流程将患者观点整合到数字健康研究的设计中，并为包容性、伦理性和以患者为中心的数字研究制定一套指导原则。方法加泰罗尼亚患者咨询委员会（CCPC）协调了一个共同创造的过程，涉及70个人代表10种不同的健康状况。五次会议（四次面对面会议和一次在线会议）使用设计思维和视觉方法进行，以促进包容性对话。与会者确定了与数字保健参与相关的需求和偏好，这些需求和偏好被综合到ProPacient十诫中。结果参与过程揭示了支持有意义的患者参与的关键因素，包括早期参与、信任建立、适应性形式和对生活经验的认可。与会者强调了清晰沟通、数字无障碍和包容性设计的重要性。由此产生的propacent十诫提供了十项可操作的原则，以指导未来的数字卫生研究。结论患者参与提高了数字健康研究的质量、相关性和公平性。ProPacient的方法提供了一个可复制的模型，用于整合患者的声音和促进参与性研究。实践意义研究人员和政策制定者可以使用ProPacient十诫来提高数字健康研究各个阶段的患者参与度。应用其原则可以缩小数字鸿沟，加强以用户为中心的创新，并增加对数字卫生干预措施的信任

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来源期刊

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.