Department of Biomedical Informatics, Columbia University, New York, NY 10032, USA ; Program for Personalized and Genomic Medicine and Center for Health-Related Informatics and Bioimaging, University of Maryland School of Medicine, Baltimore, MD 21201, USA.
Departments of Pediatrics and Medicine, Columbia University Medical Center, New York, NY 10032, USA.
J Pers Med. 2013;3(3):238-50. doi: 10.3390/jpm3030238.
Personalized medicine is a model of healthcare that is predictive, personalized, preventive and participatory ("P4 Medicine"). Genetic counselors are an ideal group to study when designing tools to support cancer P4 Medicine activities more broadly. The goal for this work was to gain a better understanding of the information cancer genetic counselors seek from their patients to facilitate effective information exchange for discussing risk. This was an analysis of a qualitative data set from interviews of eight cancer genetic counselors, recruited from three institutions. Genetic counselors at each site were interviewed using a semi-structured, open-ended questionnaire. A selective coding approach was used to determine major themes associated with genetic counseling information needs for communicating risk. We generated a model for understanding categories of genetic counseling information needs to support risk communication activities. Common activities for risk communication included risk assessment and tailoring communication. Categories of information needs included: (a) clinical patient characteristics, (b) social and cognitive patient characteristics and (c) patient motivation and goals for the genetic counseling session. A logical next step is for this model to inform the design of software systems for pre-visit patient planning and delivering just-in-time educational information to facilitate cancer risk communication activities.
个性化医学是一种医疗保健模式，具有预测性、个性化、预防性和参与性（“P4 医学”）。遗传咨询师是设计工具以更广泛地支持癌症 P4 医学活动时理想的研究群体。这项工作的目标是更好地了解癌症遗传咨询师从患者那里寻求的信息，以促进有效的信息交流，讨论风险。这是对来自三个机构的八名癌症遗传咨询师的访谈的定性数据集的分析。每个地点的遗传咨询师都使用半结构化的开放式问卷进行了访谈。采用选择性编码方法来确定与遗传咨询信息需求相关的主要主题，以支持风险沟通活动。我们生成了一个模型，用于理解支持风险沟通活动的遗传咨询信息需求类别。风险沟通的常见活动包括风险评估和量身定制的沟通。信息需求类别包括：(a)临床患者特征，(b)社会和认知患者特征，以及 (c)患者动机和遗传咨询会议目标。下一步是让该模型为预访患者规划和提供及时教育信息的软件系统设计提供信息，以促进癌症风险沟通活动。
