Barkhordarian Andre, Demerjian Gary, Jan Allison, Sama Nateli, Nguyen Mia, Du Angela, Chiappelli Francesco
Division of Oral Biology & Medicine, UCLA School of Dentistry, 10833 Le Conte Avenue, CHS 63-090, Los Angeles, CA, USA.
J Transl Med. 2015 Jan 20;13:15. doi: 10.1186/s12967-014-0366-z.
Modern health care in the field of Medicine, Dentistry and Nursing is grounded in fundamental philosophy and epistemology of translational science. Recently in the U.S major national initiatives have been implemented in the hope of closing the gaps that sometimes exist between the two fundamental components of translational science, the translational research and translational effectiveness. Subsequent to these initiatives, many improvements have been made; however, important bioethical issues and limitations do still exist that need to be addressed. One such issue is the stakeholder engagement and its assessment and validation. Federal, state and local organizations such as PCORI and AHRQ concur that the key to a better understanding of the relationship between translational research and translational effectiveness is the assessment of the extent to which stakeholders are actively engaged in the translational process of healthcare. The stakeholder engagement analysis identifies who the stakeholders are, maps their contribution and involvement, evaluates their priorities and opinions, and accesses their current knowledge base. This analysis however requires conceptualization and validation from the bioethics standpoint. Here, we examine the bioethical dilemma of stakeholder engagement analysis in the context of the person-environment fit (PE-fit) theoretical model. This model is an approach to quantifying stakeholder engagement analysis for the design of patient-targeted interventions. In our previous studies of Alzheimer patients, we have developed, validated and used a simple instrument based on the PE-fit model that can be adapted and utilized in a much less studied pathology as a clinical model that has a wide range of symptoms and manifestations, the temporomandibular joint disorders (TMD). The temporomandibular joint (TMJ) is the jaw joint endowed with sensory and motor innervations that project from within the central nervous system and its dysfunction can be manifested systemically in forms of movement disorders, and related pathological symptomatologies.Currently, there is limited reliable evidence available to fully understand the complexity of the various domains of translational effectiveness, particularly in the context of stakeholder engagement and its assessment, validation as well as the bioethical implications as they pertain to evidence-based, effectivness-focused and patient-centered care.
现代医学、牙医学和护理学领域的医疗保健基于转化科学的基本理念和认识论。最近在美国，已经实施了一些重大的国家倡议，以期弥合转化科学两个基本组成部分——转化研究与转化效果之间有时存在的差距。在这些倡议之后，已经取得了许多改进；然而，重要的生物伦理问题和局限性仍然存在，需要加以解决。其中一个问题就是利益相关者的参与及其评估与验证。像患者为中心的结果研究所（PCORI）和医疗保健研究与质量局（AHRQ）这样的联邦、州和地方组织都认同，更好地理解转化研究与转化效果之间关系的关键在于评估利益相关者积极参与医疗保健转化过程的程度。利益相关者参与分析确定利益相关者是谁，描绘他们做出的贡献和参与情况，评估他们的优先事项和意见，并了解他们当前的知识库。然而，这种分析需要从生物伦理角度进行概念化和验证。在此，我们在人-环境适配（PE-fit）理论模型的背景下审视利益相关者参与分析的生物伦理困境。该模型是一种为设计针对患者的干预措施来量化利益相关者参与分析的方法。在我们之前对阿尔茨海默病患者的研究中，我们已经开发、验证并使用了一种基于PE-fit模型的简单工具，该工具可以改编并应用于研究较少的一种病理学情况，即颞下颌关节紊乱症（TMD），它作为一种具有广泛症状和表现的临床模型。颞下颌关节（TMJ）是具有感觉和运动神经支配的颌关节，这些神经支配从中枢神经系统发出，其功能障碍可能以运动障碍及相关病理症状的形式全身性地表现出来。目前，几乎没有可靠的证据可用于充分理解转化效果各个领域的复杂性，特别是在利益相关者参与及其评估、验证以及与循证、以效果为重点和以患者为中心的护理相关的生物伦理影响方面。
