医疗卫生信息化环境下患者许可获取方案-美国.ppt

Click to edit Master title style,Click to edit Master text styles,Second level,Third level,Fourth level,Fifth level,*,This paper is intended to:,Help identify issues and challenges associated with 5 core consent models for electronic health information exchange,Provide basic definitions for the consumer consent discussion,and point out sometimes divergent stakeholder perspectives,Explore the consent models of a small set of electronic exchange efforts,and learn more about their rationale,Consider and analyze some possible consequences associated with different consent approaches,This paper is NOT intended to:,Represent a comprehensive analysis of the electronic health information exchange landscape,Represent a comprehensive review of existing consent models as applied in active electronic exchange efforts,Be directive or suggest“an answer”,What is covered,Definition of 5 core consent models,Granularity and consent,Select U.S.and International examples of exchange,Analysis and impact of consent models,Ethical considerations,Process,logistical and technical considerations,Legal framework,Stakeholder perspectives,Stakeholder Perspectives,Patients Want,:,Meaningful control over and protection of their health information,Quality,well-coordinated care,Providers Want,:,To deliver quality,well-coordinated care,Maximal quantity and quality(,i.e.,utility)of data,Protection against liability,Minimal administrative burden and cost,Payers Want,:,Maximal patient and provider participation,Minimal burden and cost,Access to data,Exchanges Want,:,Maximal patient and provider participation,Maximal flexibility to sustain the exchange,Minimal administrative/operational burden,Maximal ability to provide value to participants,Primary Research,Phone and email correspondence,HIT system developers(both for-and not-for-profit),State health agencies,State-based HIT program managers,Legal consultations,Secondary Research,Scholarly medical journals,e.g.,JAMA,NEJM,Scholarly legal journals,e.g.,NYU Law Review,Journal of Law,Medicine&Ethics,Non-profit publications,e.g.,RAND,Markle,Government publications,Congressional testimony,HIT industry publications,Observations,Small number of operational exchanges(with publically-articulated consent policies)to evaluate,Diversity across exchanges prevents generalizations about what does/does not work,The more information included(both volume and type)in an exchange,the greater the benefits(to patients,providers,clinical care,public health and research),Architecture of exchange has implications for the feasibility/desirability of certain consent options,Recommendations,One consent model may not fit all circumstances;guidance is needed for contextual assessments,Helpful steps could include:,Supporting collaboration across exchanges,Compensatory measures to promote adoption/lessen short-term cost barriers,Development of better evidence base to determine relative effectiveness and impact of different models,Coordination of broader policy discussions regarding consumer protection environment relative to consent,Systematic provision of information and tools to state HIE grantees,