Novartis Oncology Region Europe, Origgio, Italy.
Patient. 2012;5(2):127-39. doi: 10.2165/11589210-000000000-00000.
The relationship between the pharmaceutical industry and cancer patient groups has been the subject of much scrutiny and skepticism, and some high-profile negative media coverage has focused attention on some of the problematic aspects of the relationship. Both the pharmaceutical industry and cancer patient groups have made an effort in recent years to improve the transparency and openness of their relations, specifically with regard to the financial support offered by pharmaceutical companies to patient groups.
The objectives of this survey were to benchmark perceptions held by different stakeholder groups about current relationships between cancer patient groups and pharmaceutical companies in Europe, and to explore opinions about ways in which partnerships between patient groups and pharmaceutical companies could evolve to the benefit of cancer patients.
The survey was conducted using a structured questionnaire that contained a combination of matrix, scaled, and open-ended questions. The questionnaire was developed based on a literature search and the findings from ten in-depth interviews conducted with policy makers and advocates working at an EU level. Telephone interviews were carried out using a structured questionnaire with a convenience sample of 161 policy makers, cancer healthcare group representatives, and cancer patient group leaders from France, Germany, Hungary, Italy, Latvia, the Netherlands, Poland, Portugal, Romania, Spain, Sweden, and the UK. The interviews took place in the relevant language of the country.
The current relationship between the pharmaceutical industry and cancer patient groups in Europe is generally viewed as positive, but it is also viewed as being unequal, not transparent enough, and not sufficiently patient-centric. There is broad agreement that cancer patient groups can help companies identify unmet needs and contribute to the development of innovative medicines; however, there is some concern about cancer patients' competence to take on this role. Also, pharmaceutical companies and patient groups have a common interest in working together on the development of non-promotional patient information and strategies to support medicines adherence. Respondents also indicated that the two sectors have a legitimate interest in ensuring that patients in need access appropriate treatments in a timely manner. Ongoing cooperation between health professionals, pharmaceutical companies, and cancer patient groups is also viewed as important. Efforts should continue to make relations between pharmaceutical companies and cancer patient groups as equal, open, and transparent as possible.
Despite ongoing concerns about the openness and transparency of relations between pharmaceutical companies and patient groups, there is scope for these two sectors to work together on issues of common interest.
制药行业与癌症患者群体之间的关系一直备受关注和质疑，一些备受瞩目的负面媒体报道也将焦点集中在这种关系中存在的一些问题上。近年来，制药行业和癌症患者群体都在努力提高双方关系的透明度和开放性，特别是制药公司向患者群体提供的财务支持方面。
本调查旨在对不同利益相关者群体对欧洲癌症患者群体与制药公司当前关系的看法进行基准测试，并探讨如何改善制药公司与患者群体之间的伙伴关系，从而使癌症患者受益。
本研究采用了一种结构化问卷进行调查，问卷中包含矩阵、量表和开放式问题。问卷的开发基于文献检索和对在欧盟层面开展工作的政策制定者和倡导者进行的十次深入访谈的结果。采用结构化问卷，对来自法国、德国、匈牙利、意大利、拉脱维亚、荷兰、波兰、葡萄牙、罗马尼亚、西班牙、瑞典和英国的 161 名政策制定者、癌症医疗保健团体代表和癌症患者群体领导人进行了便利抽样的电话访谈。访谈以相关国家的语言进行。
欧洲制药行业与癌症患者群体之间的当前关系总体上被认为是积极的，但也被认为是不平等的、不够透明的，并且不够以患者为中心。人们普遍认为，癌症患者群体可以帮助公司确定未满足的需求，并为创新药物的开发做出贡献；然而，人们对癌症患者承担这一角色的能力存在一些担忧。此外，制药公司和患者群体在共同努力开发非促销性患者信息以及支持药物依从性的策略方面具有共同利益。受访者还表示，这两个部门有合法利益确保有需要的患者能够及时获得适当的治疗。卫生专业人员、制药公司和癌症患者群体之间持续的合作也被认为是重要的。应继续努力使制药公司与癌症患者群体之间的关系尽可能平等、开放和透明。
尽管人们对制药公司与患者群体关系的开放性和透明度持续存在担忧，但这两个部门在共同关心的问题上仍有合作的空间。
