Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers.
Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers.
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DOI：
10.1186/s40900-019-0162-2
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发表时间：
2019-01-01
影响因子：
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通讯作者：
Sibley, Kathryn M
中科院分区：
文献类型：
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作者：
Crockett, Leah K;Shimmin, Carolyn;Sibley, Kathryn M
背景：在卫生研究中，患者和公众参与的重要性日益得到承认，资助机构和期刊对患者和公众参与的明确要求证明了这一点。这些要求要求卫生研究人员领导患者和公众参与的努力，但有证据表明，这种做法仍在发展。很少有研究探讨卫生研究人员的经验和培训需求。本研究旨在建立马尼托巴省卫生研究人员在让患者和公众参与卫生研究方面的经验、认知和培训需求的基线了解。方法：采用多阶段目的抽样策略对加拿大马尼托巴省卫生研究人员进行横断面50个项目的问卷调查。使用频率、百分比对数据进行汇总，并使用卡方检验进行分析。在研究的解释阶段，咨询了当地的患者参与咨询小组，以获得关于研究结果及其含义的反馈和意见。结果：纳入了53名健康研究人员的回复。大多数参与者让患者和公众参与他们自己的研究(n=43，81.1%)。曾参与工作的人报告有一定(n=19，44.2%)、广泛(n=14，32.6%)或少量(n=10，23.3%)这一过程的经验。参与程度以告知、咨询和参与为主(分别为81.3%、64.6%和54.2%)，较少参与协作(37.5%)和患者指导(12.5%)。招募是通过多种方式进行的，参与发生在研究过程的不同阶段，而参与的主要群体是患者(n=38，82.6%)和家庭/照顾者(n=25，54.4%)。阻碍患者和公众参与卫生研究的障碍包括资金、时间、补偿、后勤、招聘、患者和研究人员层面的动机以及研究人员参与的技能。研究人员报告了对支持、资金和培训的压倒性需求和兴趣，以有效地让患者和公众参与到卫生研究中来。与患者咨询小组的咨询提供了对研究结果和未来研究领域的进一步洞察。结论：参与马尼托巴省的卫生研究人员让患者和公众以多种方式参与卫生研究，但参与程度通常较低。调查结果强调了有效、真实和有意义的患者和公众参与的障碍，并支持对卫生研究人员进行有针对性的培训、支持、资金和时间的必要性。
BACKGROUND: The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba.METHODS: A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications.RESULTS: Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n=43, 81.1%). Those who had engaged reported having some (n=19, 44.2%), extensive (n=14, 32.6%) or a little (n=10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n=38, 82.6%) and families/caregivers (n=25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research.CONCLUSIONS: Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.