Institute of Medical Genetics, Cardiff University, Cardiff, UK.
Clin Genet. 2012 Jun;81(6):514-20. doi: 10.1111/j.1399-0004.2011.01813.x. Epub 2011 Dec 13.
The use of information and communication technologies (ICTs) in the delivery of cancer genetics services could improve equality of access in rural areas and help meet the increasing demand for specialist genetics services. An online patient survey and focus groups with patients and staff from the Cancer Genetics Service for Wales (CGSW) were used to explore the acceptability and feasibility of utilizing ICTs within genetics services, which we have termed e-genetics. A total of 225 patients completed the online survey. Many aspects of e-genetics proposed in the survey were highly acceptable to patients, including an electronic version of the family history questionnaire, an email facility for cancer genetic queries, and a computerized decision-aid. Participants in the focus groups emphasized the importance of patient choice when developing new models of service delivery. For example, the use of genetic counselling via telemedicine was not considered to be preferable to face-to-face clinic appointments but could benefit those unable to travel. This article highlights the fact that e-genetics initiatives may not be appropriate for all cancer genetics service users. However, user-friendly developments that can be easily implemented and attend to individual needs could improve efficiency and cost-effectiveness, whilst providing high-quality services to remote areas.
在提供癌症遗传学服务中使用信息和通信技术（ICT）可以提高农村地区的服务可及性，并有助于满足对专业遗传学服务日益增长的需求。我们使用在线患者调查和来自威尔士癌症遗传学服务（CGSW）的患者和工作人员的焦点小组，探讨在遗传学服务中利用 ICT 的可接受性和可行性，我们称之为电子遗传学。共有 225 名患者完成了在线调查。调查中提出的电子遗传学的许多方面都受到患者的高度认可，包括电子版家族史问卷、癌症遗传查询的电子邮件设施和计算机决策辅助工具。焦点小组的参与者强调在开发新的服务提供模式时考虑患者选择的重要性。例如，通过远程医疗进行遗传咨询并不被认为比面对面的诊所预约更可取，但可以使那些无法旅行的人受益。本文强调了这样一个事实，即电子遗传学计划可能并不适合所有癌症遗传学服务用户。然而，易于实施并满足个人需求的用户友好型开发可以提高效率和成本效益，同时为偏远地区提供高质量的服务。
