Smith Elise, Bélisle-Pipon Jean-Chrisophe, Resnik David
National Institute of Environmental Health Sciences, National Institutes of Health, Research Triangle Park, NC, 27709 USA.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Cambridge, MA 02138 USA.
Citiz Sci. 2019 Mar 8;4(1). doi: 10.5334/cstp.184.
Citizen Science refers to the consultation, participation, engagement or involvement of the general public in research. Rationales for this interaction include increased public access and involvement of citizens in research, immersion of community values relevant to research, outreach and educational potential with the public, and ultimately, the democratization of science. This paper focuses on the specific subset of citizen science that seeks to engage "patient partners" in health research to gain the valuable experiential knowledge of those living with a disease. Greater patient engagement in research (PER) can provide researchers with insights about citizen values and needs relevant to determining research priorities, methodology, applications and ethical parameters; this would ideally lead to more effective real-world applications. Over the last decade, projects involving patients partners in research (PPR) have varied from mere tokenism and undervaluation to full involvement and empowerment of patient participants - the former, a subject of criticism, and the latter, promoted as an ideal. In this article, we will argue that the value of that experiential knowledge from patient partners in research should not only be acknowledged through its ongoing use, but also through recognition of participants who contribute to the creation and application of new knowledge. We will explore types of recognition that might be attributed to PPR, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the benefial outcomes of research applications. We will also consider whether such types of recognition could be applied to the broader field of citizen science.
公民科学是指公众参与、投身或介入研究。这种互动的理由包括增加公众参与研究的机会、使公民价值观融入研究、与公众开展推广和教育活动，以及最终实现科学的民主化。本文关注公民科学的一个特定子集，即寻求让“患者伙伴”参与健康研究，以获取患者的宝贵经验知识。患者更多地参与研究（PER）可以为研究人员提供与确定研究重点、方法、应用和伦理参数相关的公民价值观和需求方面的见解；这理想情况下会带来更有效的实际应用。在过去十年中，涉及患者伙伴参与研究（PPR）的项目从仅仅走过场和被低估到患者参与者的全面参与和赋权不等——前者受到批评，后者则被推崇为理想状态。在本文中，我们将论证，患者伙伴参与研究的经验知识的价值不仅应通过持续使用得到认可，还应通过对为新知识的创造和应用做出贡献的参与者的认可来体现。我们将探讨可能赋予PPR的认可类型，包括科学认可；经济认可或奖励；个人和利他认可；以及研究应用的有益成果。我们还将考虑这些认可类型是否可以应用于更广泛的公民科学领域。
