Johnson Dianne S, Bush Mary T, Brandzel Susan, Wernli Karen J
Group Health Research Institute, 1730 Minor Ave, Suite 1600, Seattle, WA 98101 USA.
Res Involv Engagem. 2016 Feb 22;2:6. doi: 10.1186/s40900-016-0020-4. eCollection 2016.
Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient's perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.
Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient's perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.
让患者参与研究变得越来越普遍，因为这会使研究及其结果对患者更具相关性。了解患者与研究人员合作的最佳方式很重要。作为积极参与研究的合作伙伴的患者能够就参与研究团队的感受提供有用的见解，但从患者角度对此进行阐述的内容却很少。作为乳腺癌研究中的患者合作伙伴和研究人员，我们分享我们的经验，以开展一个以患者为中心的项目，并将患者合作者纳入科学专家行列。随着时间的推移，患者合作伙伴的角色已发展到包括一些意想不到的角色和职责。我们利用我们的经验来分享患者的声音如何影响研究的实施，并提供一个让患者有意义地参与研究的模式。
让患者参与研究变得越来越普遍，因为这会使研究及其结果对患者更具相关性。了解患者与研究人员合作的最佳方式很重要。作为积极参与研究的合作伙伴的患者能够就参与研究团队的感受提供有用的见解，但从患者角度对此进行阐述的内容却很少。作为乳腺癌研究中的患者合作伙伴和研究人员，我们分享我们的经验，以开展一个以患者为中心的项目，并将患者合作者纳入科学专家行列。随着时间的推移，患者合作伙伴的角色已发展到包括一些意想不到的角色和职责。我们利用我们的经验来分享患者的声音如何影响研究的实施，并提供一个让患者有意义地参与研究的模式。
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