When I was pregnant with my second child, a fabulous midwife was responsible for my prenatal care. She respected that I was aware of what my body was telling me to do, or not to do.
更重要的是，当我平衡怀孕的需求与具有挑战性的工作以及更具挑战性的幼儿时，她听了对我重要的事情。
She asked about my week, my family, and my concerns, before taking my blood pressure or listening for the fetal heartbeat. I trusted her counsel as we discussed risks and care options.
我的助产士很棒，因为她不认为我知道我怀孕的优先事项。她问，倾听并将自己的知识应用于我的优先事项。我的助产士并没有使我不知所措，或者提供严格的指示或不必要的建议，而是围绕着我的需求而构成了她丰富的知识。我：一个大力投入了成功的怀孕并分娩健康的婴儿。
Is it possible to take this approach, which is not common enough at an individual level, and apply it at a population level?
Is it possible to take this approach, which is not common enough at an individual level, and apply it at a population level?
在加拿大，Canadian Agency For Drugs And Technologies In Health (CADTH) Common Drug Reviewrecommends which new drugs should receive public funding. Not all new drugs receive funding; public drug budgets are not limitless. Efficacy was demonstrated in clinical trials for the drug to be sold, but is each drug worth its price tag?
Unsurprisingly, when asked, clinicians, researchers, economists, and patients can have different ideas on what should be considered to determine a drug’s value.
2010年，在我们评估药物的临床和成本效益之前，Cadth开始询问加拿大患者群体对患者真正重要的治疗结果。
The multiple insights from the patient groups are used to develop each drug assessment’s protocol, and later on, to understand the life-world relevance of trial data included in the assessments.
结果我们的研究，published today inResearch Involvement and Engagement，证明可以将单个患者见解纳入人群水平的药物评估。
结果我们的研究，published today inResearch Involvement and Engagement，证明可以将单个患者见解纳入人群水平的药物评估。Insights from patients were used to set outcomes of importance to determine a drug’s value, and by the expert committee to understand the clinical significance of the results of the assessment.
From patients, we heard about symptom relief, slower disease progression, and avoiding death. These outcomes were often tracked in clinical trials.
However, we also heard insights on avoiding hospitalization, reducing the need for rescue medications, lowering costs for treatment, avoiding dependence upon a caregiver, and having the mental and emotional ability to engage in daily life, and more. All of these insights were infrequently captured in clinical trials.
我们并不孤单地发现患者的治疗优先级与研究人员研究的人之间的不匹配。
As patients become more engaged in health research, the things that matter most to patients will be increasingly incorporated into clinical trials.
在英国，James Lind Alliancebrings patients, caregivers, and clinicians together to identify and prioritize the ‘Top 10 unanswered questions’ about the effects of treatments. In 2015,Sally Crowe and colleagues,将患者和临床医生优先处理的治疗与研究人员研究的治疗方法相比，发现明显的差异。
As patients become more engaged in health research, the things that matter most to patients will be increasingly incorporated into clinical trials. Clinicians, at an individual level with their patients, and policy-makers, at a population level, will then have the data to address priorities identified by patients. Patients: those who tolerate side effects, who accept risks, who balance family life to accommodate treatment, and hopefully, who become or remain well.
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