Department of Bioethics, National Institutes of Health Clinical Center, Bethesda, MD, 20892, USA.
Theor Med Bioeth. 2022 Aug;43(4):267-276. doi: 10.1007/s11017-022-09579-y. Epub 2022 Aug 18.
Well before patient-centered or patient-controlled research became trendy, and earlier than calls to preferentially refer to research subjects as participants, Bob Veatch wrote "The Patient as Partner" Veatch presciently argued that research patients should not be thought of as passive subjects nor material from which to obtain data, but rather as partners in discovery. In this manuscript, I will explore Veatch's conception of patient as partner in research and how that idea has evolved and been implemented over time and consider some of the remaining challenges. Complexities of patient partnership include: clarifying the types of research in which patient partnership is most appropriate, recognizing the various possible levels of patient engagement in each case, avoiding tokenism and striving for respectful partnership, and keeping in mind the appropriate implementation of protections and safeguards. Bob Veatch would be pleased with the progress that has been made in creating research partnerships with patients, while also undoubtedly pushing us to continue to do better.
早在以患者为中心或患者控制的研究成为潮流之前，早在呼吁优先将研究对象称为参与者之前，Bob Veatch 就撰写了《患者即伙伴》一文。Veatch 有先见之明地认为，不应该将研究患者视为被动的主体，也不应该将其视为获取数据的材料，而应该将其视为发现的合作伙伴。在本文中，我将探讨 Veatch 对研究中患者作为合作伙伴的概念，以及随着时间的推移，这个概念是如何演变和实施的，并考虑一些仍然存在的挑战。患者伙伴关系的复杂性包括：澄清最适合患者伙伴关系的研究类型，认识到在每种情况下患者参与的各种可能水平，避免象征性并努力建立尊重的伙伴关系，并牢记适当实施保护和保障措施。Bob Veatch 会对与患者建立研究伙伴关系方面取得的进展感到满意，同时无疑也会促使我们继续做得更好。
