Wilson Roger
Sarcoma Patients EuroNet e.V./Association, Untergasse 36, 61200 Wolfersheim, Germany.
Clin Sarcoma Res. 2019 Jul 17;9:11. doi: 10.1186/s13569-019-0121-6. eCollection 2019.
The patient advocacy agenda covers every aspect of cancer treatment and care. This inevitably means that this review covers almost everything that patient advocates are involved with, whether locally, nationally or across national borders. Over more than 15 years of working as an advocate I have been involved in representation and/or discussion about almost all the topics which follow.
I have broken this review into five main sections and have identified within each an advocacy priority. This is then supported by a number of further areas of advocacy activity. The review starts with a look at what advocacy is and closes with a short discussion on how sarcoma advocacy is structured internationally. The five sections are: (i) Clinical challenges, (ii) Challenges for healthcare systems, (iii) The cross-border challenges, (iv) Keeping up to date, (v) Research. The five priority challenges, one within each area above, are listed respectively in order with the above: (i) Earlier accurate diagnosis and primary treatment, (ii) Multi-Disciplinary Management, (iii) Cancer registration and patient data, (iv) Quality of life and PROs, (v) Patient involvement.
Across many of the challenges which I identify good progress is being made. The importance of the partnership with the professional specialists in treating sarcoma cannot be emphasised too strongly and the leadership of key people, whether patient advocates or professionals, is acknowledged. There are challenges indicated which have yet to be properly addressed. Inevitably some of them have characteristics which make them especially problematic and they tend to drop lower on everyone's agendas. This does not mean we should forget them.
患者权益倡导议程涵盖癌症治疗与护理的方方面面。这不可避免地意味着本综述几乎涵盖了患者权益倡导者所涉及的所有事务，无论是在地方、国家还是跨国层面。在超过15年的倡导工作中，我几乎参与了以下所有主题的代表工作和/或讨论。
我将本综述分为五个主要部分，并在每个部分确定了一个倡导重点。随后有若干进一步的倡导活动领域作为支撑。综述开篇审视了什么是倡导，结尾简短讨论了肉瘤倡导在国际上是如何构建的。这五个部分分别是：（i）临床挑战，（ii）医疗保健系统面临的挑战，（iii）跨境挑战，（iv）紧跟最新进展，（v）研究。上述每个领域内的五个优先挑战按顺序分别列出如下：（i）更早的准确诊断和初始治疗，（ii）多学科管理，（iii）癌症登记和患者数据，（iv）生活质量和患者报告结局，（v）患者参与。
在我所确定的诸多挑战方面都取得了良好进展。与治疗肉瘤的专业专家建立伙伴关系的重要性无论如何强调都不为过，关键人物（无论是患者权益倡导者还是专业人员）的领导作用也得到认可。仍有一些已指出的挑战有待妥善解决。不可避免的是，其中一些挑战具有使其特别棘手的特征，并且它们在每个人的议程上的优先级往往较低。但这并不意味着我们应该忘记它们。
