Section of Public Health, School of Health and Related Research, University of Sheffield, Sheffield, UK.
Patient. 2012;5(3):199-211. doi: 10.1007/BF03262492.
Patient and public participation in health technology assessment (HTA) of medicines has been cited as an important component of the decision-making structure; however, how to actually achieve meaningful involvement is less understood.
Our objectives were to conduct a pilot study to form the basis of future research and to gain insight into how to practically and meaningfully advance patient and public input in HTAs for medicines.
Semi-structured interviews (n = 13) with informants in Australia (n = 7), Canada (n = 3), and the UK (n = 3) were conducted across agencies and experts (n = 9), as well as patient and advocacy groups (n = 4).
This pilot study identified through structured interviews three areas for further consideration. Advancement area 1 indicates that industry could help bring the patient perspective into the HTA process through incorporating patient experiences early in the drug development process and by including qualitative research on patient experiences in HTA dossiers. Advancement area 2 involves recognizing and supporting the role of patient advocacy groups, and making use of their access to the genuine patient perspective and experience of living with the condition in question. Finally, advancement area 3 is the continuous development of HTA systems and processes to better facilitate involvement, increasing transparency and feedback, exploring new options for reaching patients, and focusing on creating an active and informed health consumer.
The HTA process is becoming increasingly transparent to patients and the public; however, more effort is required to fully engage patients in the decision-making processes for medicine HTAs. This pilot study identified three key areas for further advancement in this field, and recognized a need for further research in the areas of measuring the impact of patient engagement on decision making in medicine HTAs, as well as the best methods to better prepare patient advocacy groups through HTA education and training. These research recommendations will form the basis of a future study with a larger, more comprehensive sample.
患者和公众参与药品卫生技术评估（HTA）已被认为是决策结构的重要组成部分；然而，如何真正实现有意义的参与还不太清楚。
我们的目的是进行一项试点研究，为未来的研究奠定基础，并深入了解如何实际而有意义地推进患者和公众对药品 HTA 的投入。
在澳大利亚（n=7）、加拿大（n=3）和英国（n=3）的机构和专家（n=9）以及患者和宣传团体（n=4）中进行了半结构化访谈（n=13）。
这项试点研究通过结构化访谈确定了三个需要进一步考虑的领域。推进领域 1 表明，制药行业可以通过在药物开发过程早期纳入患者的经验，并在 HTA 档案中纳入患者经验的定性研究，帮助将患者视角纳入 HTA 过程。推进领域 2 涉及认识和支持患者宣传团体的作用，并利用他们获得真正的患者视角和所关注疾病的生活经验。最后，推进领域 3 是不断发展 HTA 系统和流程，以更好地促进参与，提高透明度和反馈，探索与患者联系的新途径，并专注于培养积极和知情的医疗消费者。
HTA 过程对患者和公众越来越透明；然而，需要进一步努力，使患者充分参与药品 HTA 的决策过程。这项试点研究确定了该领域进一步推进的三个关键领域，并认识到需要进一步研究患者参与对药品 HTA 决策的影响的衡量方法，以及通过 HTA 教育和培训更好地为患者宣传团体做准备的最佳方法。这些研究建议将作为未来更大、更全面样本研究的基础。
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