PDF(Pubmed)
Abstract：
BACKGROUND: Although underserved populations- including those from ethnic minority communities and those living in poverty-have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in primary healthcare research.
METHODS: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template.
RESULTS: Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design.
CONCLUSIONS: Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.
OBJECTIVE: People living in poverty, and people from ethnic minority communities may be referred to as ‘underserved’. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities worse.
UNASSIGNED: This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities.
UNASSIGNED: We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other’s culture and history makes it easier to work together.
METHODS: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template.
RESULTS: Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design.
CONCLUSIONS: Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.
OBJECTIVE: People living in poverty, and people from ethnic minority communities may be referred to as ‘underserved’. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities worse.
UNASSIGNED: This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities.
UNASSIGNED: We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other’s culture and history makes it easier to work together.
摘要：
背景：尽管服务不足的人群——包括来自少数民族社区和生活贫困的人群——健康状况较差，医疗保健经验较差，大多数初级保健研究不能公平地反映这些群体。患者和公众参与(PPI)通常嵌入在英国(UK)的研究中。但往往不能代表服务不足的人群。这项研究与患者和公共贡献者以及当地社区领导人合作，位于社会经济贫困和种族多样化的城市地区，探索初级卫生保健研究中代表性不足的问题。
方法：我们进行了一个焦点小组，其中包括6名患者和公众参与小组（PPIG）的成员，采访了4位社区领袖(代表布莱克，南亚,罗姆人和社会经济贫困社区)。使用基于模板分析的迭代分析过程。焦点组1进行了快速分析，和创建的模板。研究结果在焦点小组2中提出，模板进一步发展。文化创伤概念被应用于模板，以提供更广泛的理论视角。然后根据模板对焦点小组和访谈进行深入分析。
结果：更广泛的社会和历史影响降低了服务不足人群对学术和医疗机构的信任。随着更实际的考虑，信任是参与研究的个人动机的基础。研究人员需要投入时间和资源,与对他们的研究具有重要意义的社区进行互利接触，包括分享对研究重点的权力和影响力。研究人员对差异权力和文化能力的反思至关重要。利用包括联合制作在内的参与式方法表明了对包容性研究设计的承诺。
结论：迫切需要重新构建循证医学，使其对健康负担最高的服务不足人群更有用和更相关。初级医疗保健研究中缺乏代表性反映了更广泛的社会不平等，文化创伤提供了一个有用的镜头。然而,研究人员可以采取一些行动来扩大代表性。这最终将有助于通过加强科学严谨性和研究的普遍性来实现增加健康公平性的目标。
目标：生活在贫困中的人们，来自少数民族社区的人可能被称为“服务不足”。服务不足的社区从卫生服务中受益较少，以及其他因素，这导致健康不平等。初级保健研究没有包括来自这些社区的足够多的人。这使得健康不平等更加严重。
■这项研究着眼于为什么服务不足社区的人不包括在研究中。它还研究了可能有帮助的东西。我们与患者和公众参与小组（PPIG）的成员进行了焦点小组讨论。这些人没有研究专长，而是利用他们作为病人的生活经历来影响研究过程。这个群体成立于2017年，来自更多的人生活在社会劣势的地区。我们还采访了当地社区领导人。访谈和焦点小组提出开放性问题，所以是探索人们对问题的看法的好方法。我们发现了一个关于文化史如何影响人们可以做什么的有用理论。我们利用这一点来帮助我们了解我们的发现如何改善和扩大服务不足社区的研究参与。
■我们发现信任非常重要。人与组织之间需要信任。还有一些实际原因，来自服务不足社区的人们可能无法参与研究。研究人员需要意识到这些事情，并在研究的所有阶段与这些社区的人合作。长期关系需要在机构和从事研究的人之间发展。了解彼此的文化和历史使我们更容易合作。
方法：我们进行了一个焦点小组，其中包括6名患者和公众参与小组（PPIG）的成员，采访了4位社区领袖(代表布莱克，南亚,罗姆人和社会经济贫困社区)。使用基于模板分析的迭代分析过程。焦点组1进行了快速分析，和创建的模板。研究结果在焦点小组2中提出，模板进一步发展。文化创伤概念被应用于模板，以提供更广泛的理论视角。然后根据模板对焦点小组和访谈进行深入分析。
结果：更广泛的社会和历史影响降低了服务不足人群对学术和医疗机构的信任。随着更实际的考虑，信任是参与研究的个人动机的基础。研究人员需要投入时间和资源,与对他们的研究具有重要意义的社区进行互利接触，包括分享对研究重点的权力和影响力。研究人员对差异权力和文化能力的反思至关重要。利用包括联合制作在内的参与式方法表明了对包容性研究设计的承诺。
结论：迫切需要重新构建循证医学，使其对健康负担最高的服务不足人群更有用和更相关。初级医疗保健研究中缺乏代表性反映了更广泛的社会不平等，文化创伤提供了一个有用的镜头。然而,研究人员可以采取一些行动来扩大代表性。这最终将有助于通过加强科学严谨性和研究的普遍性来实现增加健康公平性的目标。
目标：生活在贫困中的人们，来自少数民族社区的人可能被称为“服务不足”。服务不足的社区从卫生服务中受益较少，以及其他因素，这导致健康不平等。初级保健研究没有包括来自这些社区的足够多的人。这使得健康不平等更加严重。
■这项研究着眼于为什么服务不足社区的人不包括在研究中。它还研究了可能有帮助的东西。我们与患者和公众参与小组（PPIG）的成员进行了焦点小组讨论。这些人没有研究专长，而是利用他们作为病人的生活经历来影响研究过程。这个群体成立于2017年，来自更多的人生活在社会劣势的地区。我们还采访了当地社区领导人。访谈和焦点小组提出开放性问题，所以是探索人们对问题的看法的好方法。我们发现了一个关于文化史如何影响人们可以做什么的有用理论。我们利用这一点来帮助我们了解我们的发现如何改善和扩大服务不足社区的研究参与。
■我们发现信任非常重要。人与组织之间需要信任。还有一些实际原因，来自服务不足社区的人们可能无法参与研究。研究人员需要意识到这些事情，并在研究的所有阶段与这些社区的人合作。长期关系需要在机构和从事研究的人之间发展。了解彼此的文化和历史使我们更容易合作。
