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

基本信息

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
项目类别：
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

项目摘要

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体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，这些亚群通过对特定疾病的易感性增加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于那些最有可能受益的人，为那些不会受益的人节省成本和不良事件。成功地将个性化医疗纳入医疗保健主流，需要初级保健从业者的知识和技能发生革命，包括：1）了解个体遗传变异在常见综合症的病因、预防、诊断和治疗中的作用疾病； 2）向患者及其家属有效传达个性化遗传信息的能力； 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是有限的。我们建议开发一个在线计划来解决这一教育和实践差距，供 Coriell 个性化医疗合作组织 (CPMC) 内使用。 CPMC 是与 Coriell 研究所、福克斯蔡斯癌症中心 (FCCC) 和库珀医疗中心的合资企业。其目标是招募 10,000 名社区居民参与一项前瞻性研究，以确定如何最好地利用全基因组遗传信息来管理常见的复杂疾病。 CPMC 是目前在美国按照严格的科学协议进行的唯一个性化医疗计划，其中包括已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是对初级保健提供者进行有关复杂疾病遗传学的教育，以及将个人遗传信息适当纳入患者的护理中。这笔规划拨款将建立在最近启动的 CPMC 的基础上，并将其扩展至包括此类教育工具和材料的开发。我们将利用这三个机构所代表的专业知识来实现以下目标： 1. 创建一个指导委员会，由每个站点的研究人员组成，这些研究人员具有遗传学、遗传咨询、专业教育、信息技术、与基因组技术相关的伦理问题的专业知识和行为科学； 2. 建立个性化医疗咨询委员会，由医疗服务提供者、社区代表和患者权益倡导者组成，在各方面提供协助发展计划； 3. 为初级保健提供者（包括医生、医生助理和护士）开发、调整和现场测试在线教育工具，以促进将个性化医疗适当纳入他们的实践中； 4. 设计教育工具评估的综合计划，包括知识和技能的获取、风险沟通实践的传播以及个性化遗传信息的沟通对健康行为的影响。