Single Ann, Cabrera Ariana, Fifer Simon, Tsai Jane, Paik Jin-Young, Hope Philip
Patient Voice Initiative, Brisbane, Australia.
Community and Patient Preference Research (CaPPRe), Sydney, Australia.
Res Involv Engagem. 2021 Nov 25;7(1):83. doi: 10.1186/s40900-021-00327-5.
In some jurisdictions, patients and patient groups may be invited to provide input when Health Technology Assessment (HTA) is used to inform decisions about which medicines should be subsidised or funded. This input can help frame the evidence from a patient perspective, address uncertainties in the evidence and interpret it for the local setting. However, there is currently no evidence linking patient involvement with positive reimbursement decisions.
We aimed to understand the expectations of patient involvement in the reimbursement process, especially among cancer patient advocacy groups (PAGs) in New Zealand (Aotearoa), South Korea and Taiwan.
We developed an online survey to help understand the role that cancer PAGs play in reimbursement processes and identify knowledge gaps about the processes that might impact the efforts of PAGs. The survey elicited the views of staff and patients affiliated with PAGs (n = 43) on current practices and how the assessment and reimbursement of new cancer drugs might be improved.
There was variability in knowledge of the HTA assessment processes and in experience of being involved in them. Those with HTA experience were more likely to have confidence in the process. Those who had not been involved tended to have little awareness of, or frustration with, decision-making processes. Most identified cost, finances and economic assessments as key considerations in current processes. Some respondents had clear ideas about how their knowledge and involvement could improve processes to determine the value of new medicines. However, for many, a lack of information about the basis for decision making and opportunities to be involved was a barrier to identifying process improvement.
HTA is implemented primarily in countries seeking to have fair and equitable processes for funding medicines. PAGs often recognise the financial challenges of funding new medicines and share the desire for procedural fairness. The connection PAGs make between patient involvement and improved access to new medicines may be based on the belief they can add information to the evidence base, help solve problems, ensure fairness through transparency and/or influence the culture towards increased access to medicines they value.
在一些司法管辖区，当利用卫生技术评估（HTA）来为哪些药物应获得补贴或资助的决策提供信息时，患者及患者群体可能会被邀请提供意见。这种意见有助于从患者角度构建证据，解决证据中的不确定性，并针对当地情况进行解读。然而，目前尚无证据表明患者参与与积极的报销决策之间存在关联。
我们旨在了解患者参与报销过程的期望，尤其是新西兰（奥特亚罗瓦）、韩国和台湾地区癌症患者倡导组织（PAGs）的期望。
我们开展了一项在线调查，以帮助了解癌症PAGs在报销过程中所起的作用，并确定可能影响PAGs工作的流程方面的知识差距。该调查征集了PAGs附属工作人员和患者（n = 43）对当前做法以及如何改进新癌症药物评估和报销的看法。
对HTA评估流程的了解以及参与其中的经历存在差异。有HTA经验的人对该流程更有信心。未参与过的人往往对决策过程了解甚少或感到沮丧。大多数人认为成本、财务和经济评估是当前流程中的关键考虑因素。一些受访者对于如何利用他们的知识和参与来改进确定新药价值的流程有明确想法。然而，对许多人来说，缺乏关于决策依据的信息以及参与机会是识别流程改进的障碍。
HTA主要在寻求建立公平公正的药物资助流程的国家实施。PAGs通常认识到资助新药的财务挑战，并认同程序公平的愿望。PAGs认为患者参与与改善新药可及性之间的联系，可能基于这样一种信念，即他们可以为证据库增添信息、帮助解决问题、通过透明度确保公平和/或影响文化以增加对他们所重视药物的可及性。
