Personalized Medicine: Understanding and Utilization by Health Care Providers

描述(由申请人提供)： 个性化医学是利用个人的遗传信息来预测疾病，避免药物不良反应，并定制预防和治疗策略。它允许将个体分类为亚群，这些亚群通过增加对特定疾病的易感性或对特定治疗的反应来区分。然后，预防或治疗策略可以集中在那些最有可能受益的人身上，为那些不会受益的人节省成本和不良事件。成功地将个性化医学应用于主流卫生保健将需要初级保健从业者知识和技能的革命，包括：1)了解个体遗传变异在常见复杂疾病的病因、预防、诊断和治疗中的作用；2)向患者及其家人有效地传达个性化遗传信息的能力；以及3)适当管理遗传变异。然而，临床医生更新这些技能并将其纳入其实践的资源和机会是有限的。我们建议开发一个在线计划，以解决这一教育和实践的差距，用于科里尔个性化医学合作(CPMC)。CPMC是与科里尔研究所、福克斯·蔡斯癌症中心和库珀医疗中心的合资企业。它的目标是 招募10,000名社区居民参加一项前瞻性研究，以确定如何最好地实施全基因组遗传信息在常见复杂疾病管理中的使用。CPMC目前是美国唯一在严格的科学协议内进行的个性化药物倡议，该协议包括确定的结果和质量控制措施。该项目成功的一个关键组成部分将是对初级保健提供者进行有关复杂疾病遗传学的教育，并将个人遗传信息适当地纳入其病人的护理中。这笔规划赠款将建立在最近启动的CPMC的基础上，并将其扩大到包括开发此类教育工具和材料。我们将利用这三个机构的专业知识来实现以下目标：1.成立一个指导委员会，由每个地点的研究人员组成，他们具有遗传学、遗传咨询、专业教育、信息技术、与基因组技术有关的伦理问题和行为科学方面的专业知识；2.成立个性化医学咨询委员会， 由提供者、社区代表和患者权益倡导者组成，在所有方面协助 发展计划；3.为初级保健提供者(包括医生、医生助理和护士)开发、调整和实地测试在线教育工具，以促进将个性化药物适当地纳入他们的实践；4.设计一项全面的教育工具评价计划，包括知识和技能的获取、风险沟通做法的传播以及个性化遗传信息沟通对健康行为的影响。

DESCRIPTION (provided by applicant): Personalized medicine is the use of an individual's genetic information to predict disease, avoid adverse drug reactions and tailor preventive and therapeutic strategies. It allows the classification of individuals into subpopulations that are distinguished by increased susceptibility to a particular disease or responsive to a specific treatment. Preventive or therapeutic strategies can then be concentrated on those most likely to benefit, sparing costs and adverse events for those who will not. Successful implementation of personalized medicine into the mainstream of health care will require a revolution in the knowledge and skills of primary care practitioners to include: 1) an understanding of the role of individual genetic variants in the etiology, prevention, diagnosis and treatment of common complex diseases; 2) the ability to effectively communicate personalized genetic information to patients and their families; and 3) the appropriate management of genetic variants. However the resources and opportunities for clinicians to update these skills and incorporate them into their practice are limited. We propose the development of an online program to address this educational and practice gap, for use within the Coriell Personalized Medicine Collaborative (CPMC). The CPMC is a joint venture with the Coriell Institute, Fox Chase Cancer Center (FCCC) and Cooper Medical Center. Its goal is to enroll 10,000 community residents into a prospective study to determine how to best implement the use of genome-wide genetic information in the management of common complex diseases. The CPMC is currently the only personalized medicine initiative being conducted in the United States within a rigorous scientific protocol that includes identified outcomes and quality control measures. A critical component of the success of this project will be the education of primary care providers about the genetics of complex disease, and the appropriate incorporation of individual genetic information into the care of their patients. This planning grant will build on the foundation of the recently launched CPMC and expand it to include the development of such educational tools and materials. We will capitalize on the expertise represented by these three institutions to achieve the following aims: 1. To create a Steering Committee composed of investigators at each site with expertise in genetics, genetic counseling, professional education, information technology, ethical issues related to genomics technologies and behavioral science; 2. To establish a Personalized Medicine Advisory Board, composed of providers, community representatives and patient advocates, to assist in all aspects of the developmental plan; 3. To develop, adapt and field test online educational tools for primary care providers (including physicians, physician assistants and nurses) to facilitate the appropriate incorporation of personalized medicine into their practices; 4. To design a comprehensive plan for the evaluation of the educational tools, including the acquisition of knowledge and skills, the dissemination of risk communication practices, and the impact of the communication of personalized genetic information on health behaviors.