Personalized Medicine: Understanding and Utilization by Health Care Providers

个性化医疗：医疗保健提供者的理解和利用

• 批准号: 7742703
• 负责人: MARY Beryl DALY
• 金额: $ 39.14万
• 依托单位: FOX CHASE CANCER CENTER
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2011-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7742703
• 关键词: Address; Adoption; Adverse event; Advocate; Behavioral; Behavioral Sciences; Caring; Characteristics; Classification; Communication; Communities; Complex; Computers; Confidentiality; Counseling; Development; Diagnosis; Disease; Education; Educational Curriculum; Enrollment; Ethical Issues; Ethics; Etiology; Evaluation; Family; Foundations; Fox Chase Cancer Center; Future; Genetic; Genetic Counseling; Genome; Genomics; Goals; Grant; Health; Health Personnel; Health Professional; Health behavior; Health protection; Healthcare; Healthcare Systems; Human Genetics; Individual; Information Technology; Institutes; Institution; Joint Ventures; Knowledge; Knowledge acquisition; Learning; Legal; Mainstreaming; Measures; Medical center; Medicine; National Human Genome Research Institute; Nature; Nurses; Outcome; Outcome Study; Patient Representative; Patients; Persons; Pharmaceutical Preparations; Physician Assistants; Physicians; Predisposition; Prevention; Preventive; Primary Health Care; Professional Education; Prospective Studies; Protocols documentation; Provider; Quality Control; Randomized Controlled Clinical Trials; Reaction; Recommendation; Research Design; Research Personnel; Resources; Risk; Role; Science; Scientific Advances and Accomplishments; Site; Technology; Testing; Therapeutic; Translations; United States; United States Dept. of Health and Human Services; University Hospitals; Update; Variant; Vision; clinical practice; clinically relevant; cohort; common treatment; cost; design; genetic risk assessment; genetic variant; genome-wide; patient safety; programs; public health relevance; skills; success; tool; uptake

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.

描述（由申请人提供）： 个性化医疗是利用个人的遗传信息来预测疾病，避免药物不良反应，并制定预防和治疗策略。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。要成功地将个性化医疗纳入卫生保健的主流，就需要初级保健从业人员的知识和技能发生革命，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）向患者及其家属有效传达个性化遗传信息的能力;以及3）遗传变异的适当管理。然而，临床医生更新这些技能并将其纳入实践的资源和机会有限。我们建议开发一个在线程序，以解决这个教育和实践的差距，在科利尔个性化医疗协作（CPMC）内使用。CPMC是与Coriell研究所、Fox Chase癌症中心（FCCC）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，以确定如何最好地利用全基因组遗传信息管理常见复杂疾病。CPMC是目前美国唯一一个在严格的科学协议内进行的个性化医疗计划，该协议包括确定的结果和质量控制措施。这一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关于复杂疾病遗传学的教育，并将个人遗传信息适当纳入对患者的护理。这项规划赠款将在最近启动的儿童保护方案的基础上进一步发展，并将其扩大，以包括开发此类教育工具和材料。我们会善用这3间院校的专业知识，以达致以下目的：建立一个指导委员会，由每个研究中心的研究人员组成，他们具有遗传学、遗传咨询、专业教育、信息技术、与基因组学技术和行为科学相关的伦理问题方面的专业知识; 2.建立个性化医疗咨询委员会， 由提供者、社区代表和病人倡导者组成，协助在 发展规划; 3.为初级保健提供者（包括医生、医生助理和护士）开发、调整和现场测试在线教育工具，以促进将个性化医疗适当纳入其实践; 4.设计一个全面的计划，评估教育工具，包括知识和技能的获取，传播风险沟通的做法，和个性化的遗传信息的沟通对健康行为的影响。