Donaldson Alison, Lank Elizabeth, Maher Jane
Complexity & Management Centre, Business School, University of Hertfordshire, Hatfield, England.
Fam Cancer. 2007;6(2):249-56. doi: 10.1007/s10689-007-9129-9. Epub 2007 May 30.
When the Cancer Genetics Pilots Programme was established in 2004, Macmillan Cancer Support undertook to create and facilitate the work of a "National User Reference Group". The purpose of this group was to give service user representatives (patients and carers) from each of the seven pilot projects regular opportunities to meet and share experiences and thus strengthen the influence of patients on the services. Macmillan commissioned a narrative writer to record key aspects of the national user group's work and influence. The emerging narrative accounts, created in collaboration with its members, provide a picture of a diverse group of skilled and enterprising individuals, enthusiastic about helping future patients. Service users have contributed to shaping projects, improving written information and sustaining the local services. In addition, project staff responsible for user involvement highlighted the value of training for user representatives and the need to remove financial and logistical barriers to participation. The national user group itself received vital support from Macmillan in the form of a dedicated "group facilitator", as well as continuous guidance and encouragement from a senior manager (an "organisational sponsor") present at all the group's meetings. By the end of 2006, the group discussions indicated that user involvement had developed to varying degrees and in different forms across the pilot projects. In the best case, patient representatives were being "treated as part of the team".
2004年癌症遗传学试点项目设立时，麦克米伦癌症支持组织承诺创建并推动一个“全国用户参考小组”的工作。该小组的目的是让来自七个试点项目的服务用户代表（患者及护理人员）有定期机会会面并分享经验，从而增强患者对服务的影响力。麦克米伦委托一名叙事作家记录全国用户小组工作及影响力的关键方面。与其成员合作创作的新叙事记录描绘出一群多样的、有技能且有进取心的个体，他们热衷于帮助未来的患者。服务用户为项目的塑造、书面信息的改进以及当地服务的维持做出了贡献。此外，负责用户参与的项目工作人员强调了对用户代表进行培训的价值以及消除参与的财务和后勤障碍的必要性。全国用户小组本身从麦克米伦获得了重要支持，形式包括一名专门的“小组协调员”，以及在小组所有会议上都有一名高级经理（“组织赞助人”）提供的持续指导和鼓励。到2006年底，小组讨论表明，用户参与在各个试点项目中以不同程度和形式得到了发展。在最佳情况下，患者代表被“视为团队的一部分”。
