在医疗保健优先级设定中理解并运用患者体验作为证据。
Understanding and using patient experiences as evidence in healthcare priority setting.
作者信息
Rand Leah, Dunn Michael, Slade Ingrid, Upadhyaya Sheela, Sheehan Mark
机构信息
1Board on Health Sciences Policy, National Academies of Sciences, Engineering, and Medicine, 500 Fifth Street NW, Washington, DC 20009 USA.
2Ethox Centre, Nuffield Department of Population Health, Big Data Institute, La Ka Shing Centre for Health Information and Discovery, University of Oxford, Old Road Campus, Oxford, OX3 7LF UK.
出版信息
Cost Eff Resour Alloc. 2019 Sep 23;17:20. doi: 10.1186/s12962-019-0188-1. eCollection 2019.
BACKGROUND
In many countries, committees make priority-setting decisions in order to control healthcare costs. These decisions take into account relevant criteria, including clinical effectiveness, cost-effectiveness, and need, and are supported by evidence usually drawn from clinical and economic studies. These sources of evidence do not include the specific perspective and information that patients can provide about the condition and treatment.
METHODS
Drawing on arguments from political philosophy and ethics that are the ethical basis for many priority-setting bodies, the authors argue that criteria like need and its effects on patients and caregivers are best supported by evidence generated from patients' experiences. Social sciences and mixed-methods research support the generation and collection of robust evidence.
RESULTS
Patient experience is required for a decision-making process that considers all relevant evidence. For fair priority-setting, decision-makers should consider relevant evidence and reasons, so patient experience evidence should not be ignored. Patient experience must be gathered in a way that generates high quality and methodologically rigorous evidence. Established quantitative and qualitative methods can assure that evidence is systematic, adherent to quality standards, and valid. Patient, like clinical, evidence should be subject to a transparent review process.
DISCUSSION
Considering all relevant evidence gives each person an equal opportunity at having their treatment funded. Patient experience gives context to the clinical evidence and also directly informs our understanding of the nature of the condition and its effects, including patients' needs, how to meet them, and the burden of illness. Such evidence also serves to contextualise reported effects of the treatment. The requirement to include patient experience as evidence has important policy implications for bodies that make priority-setting decisions since it proposes that new types of evidence reviews are commissioned and considered.
背景
在许多国家，委员会为控制医疗成本而做出优先事项设定决策。这些决策会考虑相关标准，包括临床有效性、成本效益和需求，并以通常来自临床和经济研究的证据为支撑。这些证据来源并不包括患者能够提供的关于病情和治疗的特定观点及信息。
方法
基于许多优先事项设定机构的伦理基础——政治哲学和伦理学的观点，作者认为需求及其对患者和护理者的影响等标准，最好由患者体验产生的证据来支持。社会科学和混合方法研究有助于生成和收集有力证据。
结果
对于一个考虑所有相关证据的决策过程而言，患者体验是必需的。为了进行公平的优先事项设定，决策者应考虑相关证据和理由，因此患者体验证据不应被忽视。必须以能产生高质量且方法严谨的证据的方式收集患者体验。既定的定量和定性方法能够确保证据具有系统性、符合质量标准且有效。与临床证据一样，患者证据也应接受透明的审查过程。
讨论
考虑所有相关证据能让每个人在其治疗获得资助方面拥有平等机会。患者体验为临床证据提供了背景信息，并直接增进我们对病情本质及其影响的理解，包括患者的需求、如何满足这些需求以及疾病负担。此类证据还能为所报告的治疗效果提供背景信息。将患者体验纳入证据的要求对做出优先事项设定决策的机构具有重要的政策意义，因为这提议委托并考虑新型的证据审查。
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