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癌症遗传学服务新角色的能力、教育与支持:癌症遗传学试点项目的成果

Competences, education and support for new roles in cancer genetics services: outcomes from the cancer genetics pilot projects.

作者信息

Bennett Catherine, Burton Hilary, Farndon Peter

机构信息

NHS National Genetics Education and Development Centre, Morris House, c/o Birmingham Women's Hospital, Edgbaston, Birmingham, B15 2TG, UK.

出版信息

Fam Cancer. 2007;6(2):171-80. doi: 10.1007/s10689-007-9127-y. Epub 2007 May 23.

DOI:10.1007/s10689-007-9127-y
PMID:17520353
Abstract

In 2004 the Department of Health in collaboration with Macmillan Cancer Support set up service development projects to pilot the integration of genetics in mainstream medicine in the area of cancer genetics.In developing these services, new roles and responsibilities were devised that required supporting programmes of education and training. The NHS National Genetics Education and Development Centre has worked with the projects to draw together their experience in these aspects. New roles include the Cancer Family Nurse Specialist, in which a nurse working in a cancer setting was trained to identify and manage genetic or family history concerns, and the Genetic Risk Assessment Practitioner--a small team of practitioners working within a secondary care setting to deliver a standardised risk assessment pathway. Existing roles were also adapted for a different setting, in particular the use of genetic counsellors working in a community ethnic minority setting. These practitioners undertook a range of clinical activities that can be mapped directly to the 'UK National Workforce Competences for Genetics in Clinical Practice for Non-genetics Healthcare Staff' framework developed by Skills for Health and the NHS National Genetics Education and Development Centre (2007; draft competence framework). The main differences between the various roles were in the ordering of genetic tests and the provision of advice on invasive preventive options such as mastectomy. Those involved in service development also needed to develop competences in project management, business skills, audit and evaluation, working with users, general management (personnel, multi-agency work and marketing), educational supervision, IT, public and professional outreach, and research. Important resources to support the development of new roles and competences included pathways and guidelines, a formal statement of competences, a recognised syllabus, appropriate and timely courses, the availability of a mentor, supervision and opportunities to discuss cases, a formal assessment of learning and continuing support from specialist genetics services. This represents a current resource gap that will be of concern to cancer networks and a challenge to providers of educational resources and regional genetics services.

摘要

2004年,卫生部与麦克米伦癌症援助组织合作开展了服务开发项目,以在癌症遗传学领域试点将遗传学融入主流医学。在开发这些服务的过程中,设计了新的角色和职责,这需要配套的教育和培训项目。英国国家医疗服务体系(NHS)国家遗传学教育与发展中心与这些项目合作,总结它们在这些方面的经验。新角色包括癌症家庭护士专家,即在癌症诊疗机构工作的护士,接受培训以识别和处理遗传学或家族史方面的问题,以及遗传风险评估从业者——在二级医疗环境中工作的一小队从业者,负责提供标准化的风险评估流程。现有角色也根据不同环境进行了调整,特别是在社区少数民族环境中工作的遗传咨询师的角色。这些从业者开展了一系列临床活动,这些活动可直接对应由健康技能组织和NHS国家遗传学教育与发展中心制定的“英国非遗传学医护人员临床实践遗传学国家劳动力能力”框架(2007年;能力框架草案)。不同角色之间的主要差异在于基因检测的顺序以及在诸如乳房切除术等侵入性预防措施方面提供建议。参与服务开发的人员还需要培养项目管理、商业技能、审计与评估、与用户合作、综合管理(人事、多机构合作和市场营销)、教育监督、信息技术、公众和专业宣传以及研究等方面的能力。支持新角色和能力发展的重要资源包括流程和指南、能力的正式声明、认可的教学大纲、合适且及时的课程、导师的配备、监督以及病例讨论机会、学习的正式评估以及来自专业遗传学服务机构的持续支持。这代表了当前的资源缺口,癌症网络会对此表示关注,对教育资源提供者和区域遗传学服务来说也是一项挑战。

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