Graffigna Guendalina, Barello Serena, Riva Giuseppe, Savarese Mariarosaria, Menichetti Julia, Castelnuovo Gianluca, Corbo Massimo, Tzannis Alessandra, Aglione Antonio, Bettega Donato, Bertoni Anna, Bigi Sarah, Bruttomesso Daniela, Carzaniga Claudia, Del Campo Laura, Donato Silvia, Gilardi Silvia, Guglielmetti Chiara, Gulizia Michele, Lastretti Mara, Mastrilli Valeria, Mazzone Antonino, Muttillo Giovanni, Ostuzzi Silvia, Perseghin Gianluca, Piana Natalia, Pitacco Giuliana, Polvani Gianluca, Pozzi Massimo, Provenzi Livio, Quaglini Giulia, Rossi Mariagrazia, Varese Paola, Visalli Natalia, Vegni Elena, Ricciardi Walter, Bosio A Claudio
Faculty of Psychology, Università Cattolica del Sacro CuoreMilan, Italy.
Istituto Auxologico Italiano (IRCCS)Milan, Italy.
Front Psychol. 2017 Jun 6;8:812. doi: 10.3389/fpsyg.2017.00812. eCollection 2017.
Currently we observe a gap between theory and practices of patient engagement. If both scholars and health practitioners do agree on the urgency to realize patient engagement, no shared guidelines exist so far to orient clinical practice. Despite a supportive policy context, progress to achieve greater patient engagement is patchy and slow and often concentrated at the level of policy regulation without dialoguing with practitioners from the clinical field as well as patients and families. Though individual clinicians, care teams and health organizations may be interested and deeply committed to engage patients and family members in the medical course, they may lack clarity about how to achieve this goal. This contributes to a wide "system" inertia-really difficult to be overcome-and put at risk any form of innovation in this filed. As a result, patient engagement risk today to be a buzz words, rather than a real guidance for practice. To make the field clearer, we promoted an Italian Consensus Conference on Patient Engagement (ICCPE) in order to set the ground for drafting recommendations for the provision of effective patient engagement interventions. The ICCPE will conclude in June 2017. This document reports on the preliminary phases of this process. In the paper, we advise the importance of "fertilizing a patient engagement ecosystem": an oversimplifying approach to patient engagement promotion appears the result of a common illusion. Patient "disengagement" is a symptom that needs a more holistic and complex approach to solve its underlined causes. Preliminary principles to promote a patient engagement ecosystem are provided in the paper.
目前,我们观察到患者参与的理论与实践之间存在差距。尽管学者和医疗从业者都认同实现患者参与的紧迫性,但迄今为止,尚无共同的指导方针来指导临床实践。尽管有支持性的政策背景,但在实现更高程度的患者参与方面进展参差不齐且缓慢,并且往往集中在政策监管层面,而没有与临床领域的从业者以及患者和家属进行对话。虽然个别临床医生、护理团队和卫生组织可能有兴趣并深切致力于让患者和家属参与医疗过程,但他们可能不清楚如何实现这一目标。这导致了广泛的“系统”惰性——确实难以克服——并使该领域的任何形式的创新都面临风险。结果,如今患者参与有可能沦为一个时髦用语,而不是真正的实践指南。为了使该领域更加清晰,我们举办了一次意大利患者参与共识会议(ICCPE),以便为起草提供有效患者参与干预措施的建议奠定基础。ICCPE将于2017年6月结束。本文报告了这一过程的初步阶段。在本文中,我们建议“培育患者参与生态系统”的重要性:一种过于简单化的促进患者参与的方法似乎是一种常见错觉的结果。患者“不参与”是一种症状,需要更全面、更复杂的方法来解决其潜在原因。本文提供了促进患者参与生态系统的初步原则。