Harris Janet, Graue Marit, Dunning Trisha, Haltbakk Johannes, Austrheim Gunhild, Skille Nina, Rokne Berit, Kirkevold Marit
School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK.
Faculty of Health and Social Sciences, Bergen University College, Bergen, Norway.
Syst Rev. 2015 Nov 4;4:146. doi: 10.1186/s13643-015-0127-y.
Patient and public involvement in diabetes research is now actively encouraged in different countries because it is believed that involving people with experience of the condition will improve the quality and relevance of the research. However, reviews of patient involvement have noted that inadequate resources, patients' and communities' lack of research knowledge, and researchers' lack of skills to involve patients and communities in research may present significant contextual barriers. Little is known about the extent of patient/community involvement in designing or delivering interventions for people with diabetes. A realist review of involvement will contribute to assessing when, how and why involvement works, or does not work, to produce better diabetes interventions.
METHODS/DESIGN: This protocol outlines the process for conducting a realist review to map how patients and the public have been involved in diabetes research to date. The review questions ask the following: How have people with diabetes and the wider community been involved in diabetes research? What are the characteristics of the process that appear to explain the relative success or failure of involvement? How has involvement (or lack of involvement) in diabetes research influenced the development and conduct of diabetes research? The degree of support in the surrounding context will be assessed alongside the ways in which people interact in different settings to identify patterns of interaction between context, mechanisms and outcomes in different research projects. The level and extent of the involvement will be described for each stage of the research project. The descriptions will be critically reviewed by the people with diabetes on our review team. In addition, researchers and patients in diabetes research will be asked to comment. Information from researcher-patient experiences and documents will be compared to theories of involvement across a range of disciplines to create a mid-range theory describing how involvement (or lack of involvement) in diabetes research influences the development and conduct of diabetes research.
目前不同国家都积极鼓励患者及公众参与糖尿病研究，因为人们认为让有相关疾病经历的人参与进来会提高研究的质量和相关性。然而，对患者参与情况的综述指出，资源不足、患者及社区缺乏研究知识以及研究人员缺乏让患者和社区参与研究的技能可能构成重大的背景障碍。关于患者/社区在设计或实施针对糖尿病患者的干预措施方面的参与程度，人们了解甚少。对参与情况进行现实主义综述将有助于评估参与在何时、如何以及为何有效或无效，从而产生更好的糖尿病干预措施。
方法/设计：本方案概述了进行现实主义综述的过程，以梳理患者和公众迄今如何参与糖尿病研究。综述问题如下：糖尿病患者及更广泛的社区如何参与糖尿病研究？似乎能解释参与相对成功或失败的过程特征有哪些？糖尿病研究中的参与（或缺乏参与）如何影响糖尿病研究的开展和实施？将评估周围环境的支持程度，以及人们在不同环境中的互动方式，以确定不同研究项目中背景、机制和结果之间的互动模式。将针对研究项目的每个阶段描述参与的水平和程度。这些描述将由我们综述团队中的糖尿病患者进行严格审查。此外，还将征求糖尿病研究领域的研究人员和患者的意见。将研究人员与患者的经验信息和文件与一系列学科的参与理论进行比较，以创建一个中程理论，描述糖尿病研究中的参与（或缺乏参与）如何影响糖尿病研究的开展和实施。
