Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field.
Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field.
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DOI：
10.3389/fpubh.2022.915438
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发表时间：
2022
影响因子：
5.2
通讯作者：
Yamamoto, Beverley
中科院分区：
文献类型：
--
作者：
Katirai, Amelia;Kogetsu, Atsushi;Kato, Kazuto;Yamamoto, Beverley
在确定医学研究的优先顺序时，患者参与是确保有限的研究资金被分配给最好地为患者服务的重要方式。作为一个研究资金有限的疾病领域，我们看到了PI在确定罕见疾病医学研究的优先顺序方面的特殊效用。在这篇综述中，我们认为PI倡议是政策制定的重要证据形式。我们进行了一项研究，以确定在罕见疾病领域进行的PI倡议的程度、此类倡议的特点、引起的优先事项的趋势以及学术文献中报道的转化为政策的程度。在这里，我们报告了通过在线数据库和搜索引擎收集的英语文献的探索性审查结果，目的是识别在2020年12月之前发表的期刊文章，描述了PI倡议，重点是确定罕见疾病领域医学研究资金的优先顺序。我们确定了最近发表的七篇文章，发现大多数文章使用结构化方法来确保所产生的证据的稳健性，但很少有报告的实际执行情况或落实举措结果的具体计划。我们的结论是，优先设置倡议是让患者参与确定研究方向的有意义的机制。然而，我们强调将政策转化为政策的重要性，认为这是充分利用成果和超越善意的行动的必要下一步。最后，我们提请注意在整个过程中让患者参与的好处。
Patient involvement (PI) in determining medical research priorities is an important way to ensure that limited research funds are allocated to best serve patients. As a disease area for which research funds are limited, we see a particular utility for PI in priority-setting for medical research on rare diseases. In this review, we argue that PI initiatives are an important form of evidence for policymaking. We conducted a study to identify the extent to which PI initiatives are being conducted in the rare disease field, the features of such initiatives, the trends in the priorities elicited, and the extent to which translation into policy is reported in the academic literature. Here, we report the results of this exploratory review of the English-language literature gathered through online databases and search engines, with the aim of identifying journal articles published prior to December 2020, describing PI initiatives focused on determining priorities for medical research funding in the rare disease field. We identified seven recently-published articles and found that the majority made use of structured methodologies to ensure the robustness of the evidence produced, but found little reported practical implementation or concrete plans for implementation of the results of the initiatives. We conclude that priority-setting initiatives are meaningful mechanisms for involving patients in determining research directions. However, we highlight the importance of translation into policy as a necessary next step to fully utilize the results and move beyond well-intentioned exercises. Finally, we draw attention to the benefits of involving patients throughout this process.
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影响因子：
--
作者：
Feldman D;Kruger P;Delbecque L;Duenas A;Bernard-Poenaru O;Wollenschneider S;Hicks N;Reed JA;Sargeant I;Pakarinen C;Hamoir AM;Patient Focused Medicines Development Working Groups 1;Patient Focused Medicines Development Working Groups 2A;Patient Focused Medicines Development Working Groups 2B
通讯作者：
Patient Focused Medicines Development Working Groups 2B
影响因子：
2.9
作者：
Mollan, Susan;Hemmings, Krystal;Sinclair, Alexandra J.
通讯作者：
Sinclair, Alexandra J.
影响因子：
2.1
作者：
Hawkins, Benjamin;Parkhurst, Justin
通讯作者：
Parkhurst, Justin
影响因子：
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作者：
Hamakawa N;Kogetsu A;Isono M;Yamasaki C;Manabe S;Takeda T;Iwamoto K;Kubota T;Barrett J;Gray N;Turner A;Teare H;Imamura Y;Yamamoto BA;Kaye J;Hide M;Takahashi MP;Matsumura Y;Javaid MK;Kato K
通讯作者：
Kato K
影响因子：
3.9
作者：
Gusenbauer, Michael
通讯作者：
Gusenbauer, Michael