患者主导的研究和生物医学知识生产,分发和消费的迁移
Dixi Louise Strand1,2, Mari Holen1
1Roskilde University, Denmark.
Health (London, England : 1997)
|April 27, 2024
概括
患者和公众参与研究 (PPIR) 是生物医学研究的关键. 父母主导的ADNP综合征研究整合了患者的专业知识,增强了科学.
科学领域:
- 生物医学研究生物医学研究
- 患者和公众参与研究 (PPIR)
- 罕见疾病研究 罕见疾病研究
背景情况:
- 患者和公众参与研究 (PPIR) 在生物医学研究中越来越重要.
- 这项研究检查了在ADNP综合征,一种罕见疾病的背景下患者主导的研究.
- 重点是将患者的经验知识和专业知识与科学专业知识相结合.
研究的目的:
- 了解患者的经验知识和专业知识如何成为生物医学研究科学专业知识的组成部分.
- 在ADNP综合征的背景下分析患者主导研究的动态.
- 探索患者参与如何改变科学实践和知识建设.
主要方法:
- 对ADNP综合征的家长主导研究倡议的案例研究分析.
- 检查患者知识如何与科学知识实践相结合.
- 对非专业知识和科学专业知识之间的相互作用进行定性分析.
主要成果:
- 父母主导的ADNP综合征研究有效地"模仿"生物医学知识实践.
- 这种整合增强了科学专业知识的合法性.
- 患者和亲属的参与取代并改变了传统的科学实践.
结论:
- 患者主导的研究,如在ADNP综合征中所见,证明了整合多样化的知识系统的强大模型.
- 该研究强调了让患者和家属参与生物医学研究的变革潜力.
- 这种方法重新定义了科学专业知识和知识共同创造的界限.
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