Patient participation in fundamental psychiatric genomics research: a Dutch case study
Patient participation in fundamental psychiatric genomics research: a Dutch case study
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DOI：
10.1111/j.1369-7625.2010.00634.x
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发表时间：
2011-09-01
影响因子：
3.2
通讯作者：
Abma, Tineke A.
中科院分区：
文献类型：
--
作者：
Baart, Ingrid L. M. A.;Abma, Tineke A.
目的 分析行动研究过程的结果，其目的是在制定患者参与对话模型的理论背景下让患者参与基础精神基因组学研究。背景 对于消费者和患者参与基础医学研究的价值、适当性和潜力，仍然存在不同的观点。有必要从实际例子中学习。 设计 建立了一个行动研究流程，以促进和刺激荷兰患者组织和家庭组织参与精神病学研究联盟。 结果 对话模型的前提和程序构成了参与基础研究的良好指南。然而，该模型背后的患者参与的规范核心特征被证明是有问题的，因为：（i）复杂的精神病基因组学研究的特性； (ii) 主观性与基础精神病学的纠缠； (iii) 公民身份的普遍概念以及精神基因组学研究中描述患者的困难。 结论 在基础基因组学研究中，科学家、患者和家庭成员之间的互动和对话是可能的。参与的最佳方法似乎是基于建立共同点和不断发展的对话，对话模型的指导方针可以提供这一点。这里的挑战将是在对话过程的规范锚点上建立对话，并确定和监测这些（有形）对话中固有的权力关系。
Objective To analyse the results of an action research process, the aim of which is to involve patients in fundamental psychiatric genomics research, against theoretical backgrounds that formulate a Dialogue Model for patient involvement.Background Mixed views continue to exist about the value, appropriateness and potential of involving consumers and patients in basic medical research. There is a need to learn from practical examples.Design An action research process was set up to facilitate and stimulate the involvement of a Dutch patient organization and a family organization in a psychiatric research consortium.Findings The premises and procedures of the Dialogue Model constitute good guidelines for involvement in fundamental research. However, the normative core features for patient involvement underlying the model prove problematic due to: (i) properties of complex psychiatric genomics research; (ii) the entanglement of subjectivity and basic psychiatric science; (iii) universal notions of citizenship and difficulties of delineating the patient in psychiatric genomics research.Conclusion Interaction and dialogue among scientists, patients and family members are possible in fundamental genomics research. The best approach for involvement would seem to be based on the creation of common ground and an evolving dialogue, which the guidelines of the Dialogue Model can provide. The challenge here will be to create also a dialogue on the normative anchor points of the dialogue process and to identify and monitor power relations inherent in these (tangible) dialogues.