Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.

Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.
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DOI:
10.1186/s12961-018-0282-4
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发表时间:
2018-02-07
影响因子:
4
通讯作者:
Vandall-Walker V
Vandall-Walker V
中科院分区:
医学2区
文献类型:
--
作者:
Manafo E;Petermann L;Mason-Lai P;Vandall-Walker V

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在过去的10年里,患者参与健康研究已经成为医疗保健研究的下一个发展方向。然而,关于患者参与健康研究的明确作用和范围的证据有限,缺乏关于其影响的证据,影响了患者参与的吸收,实施和持续发展。本研究的目的是进行范围审查,以确定患者参与健康研究的方法和结果。采用了最初由Arksey和O'Malley描述并由Levac、Colquhoun和奥布莱恩更新的范围界定审查方法。将正式数据库检索的来源和灰色文献检索的相关文件汇编到数据提取表中。根据患者参与健康研究的(1)方法和(2)结果,将文章合成为关键主题。范围界定审查的总产出是来自加拿大、英国和美国的55条记录。虽然用于使患者参与健康研究的方法的证据正在增加,但需要更强有力的证据来证明特定的患者和医疗保健系统的结果。这就需要进一步动员研究,探索成果,验证评估参与的具体工具。此外,还缺乏能够更好地在整个健康研究生命周期中为患者提供信息和维持患者参与的理论框架。进一步增加患者参与健康研究的数量和范围将支持规范患者在研究中的角色所需的范式转变,超越“受试者”或“参与者”,从而最终改善患者的健康结果,更好地解决加拿大的医疗保健改革。
Over the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research. An adaptation of the scoping review methodology originally described by Arksey and O’Malley and updated by Levac, Colquhoun and O’Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research. The total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking. Further increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient’s role in research beyond ‘subject’ or ‘participant’, so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.
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