Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.
Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.
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DOI：
10.1186/s40900-018-0133-z
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发表时间：
2019-01-01
影响因子：
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通讯作者：
Robert, Glenn
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文献类型：
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作者：
Locock, Louise;Kirkpatrick, Susan;Robert, Glenn
摘要：患者或用户对健康研究的参与是公认的，但通常仅限于对研究问题和设计提出建议，让研究人员收集和分析“数据”（在本文中，这意味着与患者就其经历进行访谈的书面副本）。我们的工作对象是：1)患有抑郁症的年轻人；2)有中风经历的人。我们正在寻找对NHS有用的关键主题，我们制作了短片，医护人员可以用它来思考如何使护理更加以病人为中心。我们想看看用户参与这个分析会带来什么，以及如何最好地实现它。在研究小组对访谈进行分析后，我们与具有患者/服务使用者或护理人员相关经验的人进行了为期一天的研讨会。我们对他们进行了一些简短的培训，教他们如何分析访谈，以及如何利用访谈来提高护理质量。然后我们看了采访的摘录，并讨论人们是否能看到与研究人员相同的主题。人们发现了与研究人员相似的主题，但也发现了研究人员遗漏的新细节。然而，他们觉得阅读大量文本并不是利用时间和经验的最佳方式。相反，他们建议一种更好的方法是让研究人员在分析开始时与一组用户会面，讨论需要注意的问题。摘要：患者或使用者参与健康研究是一个公认的原则。然而，参与往往仅限于对研究问题和设计提出建议，让研究人员完成数据收集和分析。参与数据分析是参与中最具挑战性、探索最少的方面之一。定性访谈数据构成了大量丰富而复杂的材料，处理起来可能令人望而生畏。分析患者的叙述性访谈是一种以患者为中心的质量改进方法的核心，这种方法被称为基于经验的共同设计。该分析确定了“接触点”——医疗保健体验的关键时刻——并导致了“触发膜”的产生，以激发患者和工作人员之间的共同设计讨论。我们想看看用户参与这种分析会带来什么，以及如何最好地实现它。方法作为一项更广泛的二次分析研究的一部分，我们重新分析了患有抑郁症和中风的年轻人的经历的访谈记录。然后，我们与具有相关生活经验的人一起举办了两个研讨会，在经过简短的培训后，使用相同材料的摘录。研究结果：参加研讨会的人确定了与研究人员相似的主题，但也带来了一些新的见解。虽然他们很容易地接触到所选择的材料，但我们低估了人们完成这些材料所需的时间。第一次研讨会非常重视讨论和分享经验和观点。因此，在第二次工作坊中，我们从小组讨论开始，根据人们自己的经验，讨论他们认为的接触点是什么，然后一起看一个触发电影的草案，看看它是如何比较的。相关人员认为，虽然可以少量分析转录本，但这并不是对他们时间的最佳利用。我们认为，用户参与分析的核心是对话，而不是数据。在分析过程中保留生活经验的价值，而不给人们带来过多的数据负担的一种方法是，在分析开始时引发用户对其经验的反思，并将其作为指导，在剩余的过程中指导研究人员和服务用户的注意力。
PLAIN ENGLISH SUMMARY: Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse 'data' (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically.After the researcher team had analysed the interviews, we ran two one-day workshops with people with relevant experience as a patient/service user or carer. We gave them some brief training in how to analyse interviews and how they might be used for improving the quality of care. Then we looked at extracts from the interviews, and discussed whether people could see the same themes as the researcher.People identified similar themes to the researcher, but also identified new details the researcher had missed. However, they felt reading large amounts of text was not the best way to use their time and experience. Instead they recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for.ABSTRACT: Background Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with.Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies 'touchpoints' - key moments of healthcare experiences - and leads to the production of a 'trigger film' to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the second workshop, we therefore started with group discussion, based on people's own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.