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  • Search | Markle | Advancing America's Future
    this collaborative response to the Request for Information issued by your office This submission represents an extraordinary diversity of stakeholders who share a commitment to improving the health care system through more effective use of health information These thirteen major health and technology organizations have endorsed a Common Framework to support health information exchange in the United States while protecting patient privacy We have identified the vital design elements of standards policies and methods for creating a new information environment that would allow health care professionals institutions and individual Americans to exchange health information in order to improve patient care Together and individually we are committed to collaborating with your office and the many other dedicated and creative partners to achieve the vision of a more effective and connected health care system Thank you for the opportunity to provide this contribution to the national dialogue on this vital topic Sincerely The American Health Information Management Association The American Medical Informatics Association The American National Standards Institute Healthcare Informatics Standards Board The Center for Information Technology Leadership The Connecting for Health Steering Group The eHealth Initiative The Healthcare Information and Management Systems Society Health Level Seven Inc HIMSS EHR Vendor Association Integrating the Healthcare Enterprise Internet2 The Liberty Alliance Project The National Alliance for Health Information Technology David Lansky s Cover Letter to HHS Dear Dr Brailer It has been our privilege to convene the patient and consumer organizations listed below to develop a statement of Patient and Consumer focused Principles for design of the National Health Information Network in response to your Request for Information They identified what they believe to be the critical concerns and hopes of the American public as we all work together to build a more effective and efficient health care system that capitalizes on the benefits to health that can come from the use of information The development of these principles involved the participation of AFL CIO Consumers Union Families USA Health Privacy Project International Association of Machinists and Aerospace Workers National Coalition of Cancer Survivorship National Consumers League National Health Council National Partnership for Women and Families These organizations are committed to shaping a NHIN that puts patients and families at the center giving each person the opportunity to better manage his or her own health and health care We look forward to working with you to turn these principles into an operating reality for every American Sincerely David Lansky Ph D Director Health Program Collaborative Response to AHRQ on Quality Data Stewardship We encourage AHRQ and AQA to develop systems for nationally uniform performance measurement with a humble recognition of our limited and evolving understanding of what information users will seek in order to make better decisions and of the many other activities that make use of similar data A robust policy and technology infrastructure will support all of these legitimate purposes earn the public s trust and allow continued innovation in how we apply health information to improve quality Dissenting Statement on

    Original URL path: http://www.markle.org/solr-search?keyword=&page=76 (2016-02-10)
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    benchmarking and greater empowerment of patients and families as active participants in their own healthcare among other benefits The linking problem is simple to describe but hard to solve how does a healthcare professional link a patient with their health files and how do they know that any two files stored in different places refer to the same person This problem occurs every time a care provider asks to have a patient s file pulled or updated and every time a patient moves or changes doctors visits a new lab or specialist or falls ill while traveling At its core the linking problem is one of identity how can we say for sure that a patient in the office is to be matched with a particular set of records or that two sets of records can be merged because they belong to the same patient The goal of the Linking Working Group was to address these issues proposing practical strategies for improving healthcare through improved linking of information in a secure and efficient manner and in a way that allows healthcare professionals much improved access to needed information while respecting patients privacy rights Additionally we assumed that our proposals would be implemented in a five year time frame with the additional assumption that any test bed or pilot project implementations would therefore have to be ready in between one and three years depending on the complexity of the problems to be worked on We thus focused on techniques for record linking already in use in other areas rather than on the design of entirely new methods Demonstrating Meaningful Use of Health IT for 2011 and Beyond On behalf of a broad range of health leaders the Markle Foundation Center for American Progress and the Engelberg Center for Health Care Reform at Brookings offer recommendations on measuring and demonstrating meaningful use of health IT under the American Recovery and Reinvestment Act of 2009 The Department of Health and Human Services HHS has a critical opportunity to set clear priorities that will foster the adoption of heath IT to demonstrably improve the quality and cost effectiveness of care The process to demonstrate meaningful use can engage patients build capacity for quality improvement lower administrative burdens on providers and patients and if done strategically and in service of these goals send a clear market signal that the focus is on using technology to improve care Letter to HHS and the Office of Management and Budget on Meaningful Use In this letter to HHS and OMB leaders Markle Connecting for Health collaborators provide recommendations for the pending federal rule on meaningful use of health IT under the Recovery Act Comments on the Office of the National Coordinator s Preliminary Definition of Meaningful Use These comments are a response to the request for comment on the meaningful use definition released by the United States Department of Health and Human Services HHS They are the result of a joint effort by the Markle Foundation the Center

    Original URL path: http://www.markle.org/solr-search?keyword=&page=77 (2016-02-10)
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  • Search | Markle | Advancing America's Future
    in Health Care Summary of Organizational and Governance Recommendations To encourage the government to enable organizational and governance progress as well as the industry to move forward and begin to develop the tools necessary to successfully sustain infrastructure and clinical IT application adoption we make the following four organizational and governance recommendations as starting points Communities should assess their readiness for local and regional data sharing by conducting a rigorous review of the technical clinical organizational community commitment and leadership all critical success factors in building and managing a local health information infrastructure Communities will require a source of activation to catalyze or enforce convening of a health information exchange infrastructure Most management and legal issues faced by communities and individuals in establishing a health information infrastructure consistent with effective security and privacy protections can be addressed in the context of existing law and through use of contracts As health information exchange implementations mature significant issues that are currently poorly understood may require policy and regulatory changes to enable sustainable adoption Trust but Verify A doctor I see for my thyroid tumor recently made a mistake While the recommendation of the specialist an endocrinologist in this case didn t cause me to lose a limb or seriously jeopardize my health the experience did give me first hand insight of how easy medical mistakes happen when doctors don t have access to information when making decisions In 2001 I was diagnosed with a thyroid nodule which thankfully turned out to be benign Recently since I hadn t seen an endocrinologist for three years my primary care physician referred me to a leading expert in the field to see if the tumor had grown The specialist gave me a clinical exam and pronounced the tumor had not grown perhaps even shrunk To substantiate that finding she referred me for an ultrasound The ultrasound report conflicted with the clinical findings and stated that the tumor had grown What happened next eroded my trust in our health care system and convinced me that patients need to play a bigger role in their own health care Those patients who blindly put full faith in our current health care system I m now convinced are those most likely to incur a medical mistake If we are involved it can sometimes mean the difference between getting the right care or getting the wrong care or perhaps life and death Thanks to an effort by Beth Israel Deaconess Medical Center and other Boston area institutions to allow patients to access their medical information on line I am able to electronically track my health care services maintain my medical records and test results and e mail my primary care doctor The initiative called PatientSite is a great resource for patients for many reasons but I m most grateful for how it allowed me to avoid a medical error Before my specialist called me about my ultrasound results I was able to check the results myself from home via PatientSite

    Original URL path: http://www.markle.org/solr-search?keyword=&page=78 (2016-02-10)
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    SNO by providing a basis upon which to begin drafting that SNO s Terms and Conditions All language provided in the Model is intended for illustrative purposes only Each SNO will have to draft its Terms and Conditions based upon its own organization operations system and services regulatory environment and so on Some of the Model s terms will be inapplicable to some SNOs The Model shows where some of the variations might be expected to occur Response to New Federal Health Data Breach Notification Requirements Markle the Center for Democracy and Technology and others comment on the new federal health data breach notification provisions to be administered by the US Department of Health and Human Services Our comments rest on the need for a consistent and consumer oriented approach to privacy and security policies for personal health records PHRs We understand this issue will be broadly addressed in the forthcoming HHS and FTC privacy and security recommendations for PHRs but we strongly recommend that HHS and FTC take this early opportunity to align policies and make them meaningful to consumers who must be able to navigate their use of PHRs Objective Standards Needed for Evaluating Information Breaches Markle s Connecting for Health Initiative has since 2002 brought together leading government industry and health care experts to accelerate the development of a health information sharing environment to improve the quality and cost effectiveness of health care while protecting privacy The Center for Democracy and Technology CDT through its Health Privacy Project promotes comprehensive privacy and security policies to protect health data as information technology is increasingly used to support the exchange of health information Markle and CDT along with those listed at the end of this letter submit these comments in response to the interim final rule IFR establishing requirements for notification of breaches of unsecured protected health information and request for comments issued by the Department of Health and Human Services HHS under the American Recovery and Reinvestment Act of 2009 ARRA 1 The HHS IFR which applies to entities covered by the Privacy and Security Rules of the Health Information Portability and Accountability Act HIPAA was issued at around the same time the Federal Trade Commission FTC issued its final rule2 governing breach notification for personal health record PHR vendors and related entities that are not HIPAA covered entities collectively referred to as PHR vendors 3 Because there is overlap between these two sets of standards we have taken the FTC s final rule into account in formulating these comments on HHS IFR We also address HHS clarification of guidance issued contemporaneously with its IFR which specifies the secure technologies and methodologies that when utilized by HIPAA covered entities or PHR vendors provide a safe harbor from the ARRA s breach notification requirements Our comments are based on a few core principles A comprehensive framework of privacy protections including greater transparency regarding uses and disclosures of personal health data is crucial to consumer trust in health information technology

    Original URL path: http://www.markle.org/solr-search?keyword=&page=79 (2016-02-10)
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    Commentary President s Letters Videos About Markle Page Sections About Markle A Message from Zoë Baird Our Principles Our Impact Board of Directors Senior Team Our History Quick Links Conference Space Events Markle in the News Media Releases Past Initiatives President s Letters Rework America Page Sections About Rework America A Message from Rework America Opportunity for All Our Impact Initiative Members Expert Advisors Quick Links Rework America Connected Our Book America s Moment Initiative Overview Latest News Letters to Members Member Commentary Personal Stories Rework America Library Health Page Sections About Health Our Impact Steering Group Consumer Work Group HIE Committee Quick Links Blue Button Common Framework Health IT Health Library National Security Page Sections About National Security Post 9 11 Legacy Our Impact Task Force Quick Links National Security Library Reports and Recommendations Sharing and Collaboration The Lawfare Blog Library Quick Links Our Book America s Moment Archive Media Releases Member Commentary President s Letters Videos Search Results Search Connecting Americans to Their Health Care User Centered Design Steve Downs from Robert Wood Johnson Foundation Holly Massett from National Cancer Institute Patti Brennan from University of Wisconsin Madison and Stefanie Fenton from Intuit discuss how user centered design can be applied to health care and PHRs Connecting Americans to Their Health Care Understanding the VA and the VistA Lygeia Ricciardi from Markle Foundation Virginia S Price from U S Dept of Veterans Affairs David M Douglas from U S Dept of Veterans Affairs and Ronald D Brimmer a VA patient discuss how the VA launched eHealth for My HealtheVet from analysis requirements gathering development pilot and finally to implementation Connecting Americans to Their Health Care Policies 101 This presentation describes the health care landscape the purpose of Connecting for Health and the need for a Common Framework Connecting Americans to Their Health Care PHRs 101 This presentation by David Lansky PhD and Josh Lemieux of Markle Foundation and Danny Sands MD of Cisco Systems provides a basic understanding of PHRs assesses the current landscape introduces key stakeholders discusses key barriers and explores possible solutions and the future Connecting Americans to Their Health Care Act Locally Scott Young from the Agency for Healthcare Research and Quality Allison Rein from National Consumers League Holt Anderson from North Carolina Healthcare Information and Communications Alliance and Micky Tripathi from Massachusetts e Health Collaborative discuss how health IT through the use of EHRs PHRs and Regional Health Information Organizations RHIOs can improve patient health population health and overall efficiency while decreasing costs Connecting Americans to Their Health Care Think Nationally David Lansky from Markle Foundation John Rother from AARP Kathleen Weldon for Rep Nancy Johnson Andrea Palm fpr Sen Hillary Rodham Clinton Dean Rosen from Mehlman Vogel Castagnetti Inc and Jane Loewenson from National Partnership for Women and Families discuss consumer principles and policy implications and the endorsers of these principles Connecting Americans to Their Health Care Creating Demand Stuart Schear from Markle Foundation Bill McInturff from Public Opinion Strategies and Matt Handley

    Original URL path: http://www.markle.org/solr-search?keyword=&page=80 (2016-02-10)
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    Security Page Sections About National Security Post 9 11 Legacy Our Impact Task Force Quick Links National Security Library Reports and Recommendations Sharing and Collaboration The Lawfare Blog Library Quick Links Our Book America s Moment Archive Media Releases Member Commentary President s Letters Videos Search Results Search Health Information Exchange Experience from Indiana This presentation covers the state of Indiana s experience with Health Information Exchanges and how it is progressing to an environment that enables secure health data exchange Connecting Americans to Their Health Care Latest Research David Ahern from Health eTechnologies Eric Dishman from Intel Corporation Corey Angst from University of Maryland and Steve Ross from University of Colorado present their organization s latest research on PHRs Creating a Public Good for the Public s Health Markle Connecting for Health presented this information at the Institute of Medicine to promote 21st century thinking for population data challenges The key goals of the presentation included the following Be open to resetting definitions and assumptions about health data and research approaches Articulate new broadly accepted working principles based on 21st century information paradigms Develop an information policy framework that broadly addresses public hopes and concerns Protecting America s Freedom in the Information Age The Markle Task Force explores ways in which we can organize people at all levels from neighborhoods to federal agencies and develop innovative technologies that will allow us to mobilize information to better prevent terrorist attacks in the U S reduce America s vulnerability to terrorism minimize damage and recover from attacks that may occur This report also examines the potential of the Department of Homeland Security as a central hub for the collection and analysis of information Creating a Trusted Network for Homeland Security The Markle Task Force on National Security in the Information Age provides guidelines and recommendations for the creation and implementation of a trusted information sharing network for homeland security The Markle Task Force wrote In this report we reaffirm the principles of our first report and offer greater detail on how we believe the government should create networks for information collection sharing analysis and use across federal state and local agencies and the private sector while preserving and even enhancing privacy and other civil liberties The 2002 Olympic Winter Games Security Lessons Applied to Homeland Security In October the Oquirrh Institute held the 2002 Olympic Security Review Conference to determine what went well and what could have been done more effectively at the XIX Olympic Winter Games in Salt Lake City The 60 conference participants identified seven principles learned from the Olympics that can be applied to homeland security This report is a discussion of those lessons Testimony of Zoe Baird submitted to the Select Committee on Homeland Security U S House of Representatives In testimony to the Select Committee on Homeland Security of the U S House of Representatives the Markle Task Force on National Security in the Information Age outlines the key feature of the SHARE Network and stresses

    Original URL path: http://www.markle.org/solr-search?keyword=&page=81 (2016-02-10)
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    Search Results Search We Cannot Fight Terrorism Without Better Information Zoë Baird and Jim Barksdale comment that the persistence information isolation is a threat to national security and suggest the SHARE Network as a solution Although SHARE was embraced by the 9 11 Commission the Markle Task Force on National Security in the Information Age argues that strong leadership in the form of a directive from the President is needed to successfully implement the network The SHARE Network represents a virtual reorganization of government by fundamentally altering how information is used to facilitate better faster decision making at all levels of government And when paired with clear guidelines to govern the system and effective oversight the use of information technology can also be the best way to protect privacy and civil liberties Task Force on National Security in the Information Age The Task Force on National Security in the Information Age was formed in April 2002 to address critical issues surrounding the use of information and communications technology to enhance our national security This guide is a collection of biographies for the Markle Task Force members Action Plan for Federal Government Development of the SHARE Network The Markle Task Force suggests steps for implementing the SHARE Network Enhancing Security and Civil Liberties In this open letter Markle Task Force members Dave Farber Esther Dyson and Tara Lemmey advocate the need to protect privacy and civil liberties and they suggest this can be facilitated by information sharing and technology tools They also discuss the task force s previous work in this area including 9 11 Commission recommendations and the SHARE Network Introduction of the Homeland Security Interagency and Interjurisdictional Information Sharing Act of 2004 Senator Joe Lieberman introduces the proposed bill for the Homeland Security Interagency and Interjurisdictional Information Sharing Act of 2004 and discusses the need for information sharing among federal agencies He also expresses that the legislation introduced would require consistent funding the establishment of a SHARE Network and implementation of performance measures and genuine incentives to encourage information sharing Proposed Bill Homeland Security Interagency and Interjurisdictional Information Sharing Act of 2004 This proposed bill promotes increased information sharing across all levels of law enforcement and stresses the need to overcome cultural and structural information barriers Letter to the President on Building the Information Sharing Environment In this letter to the President Zoe Baird and James Barksdale offer the following suggestions for the his report to Congress make clear that the Director of National Intelligence has responsibility for the creation of the ISE emphasize the development of government wide policies and guidelines as the foundation for the adoption of information sharing capabilities and procedures develop policies addressing key issues immediately give the PM the necessary resources to get the job done and engage quickly as policies and guidelines are developed Baird and Barksdale urge the President to reiterate to his Cabinet officers and all United States Government officers that they should interpret all applicable laws and regulations to enable

    Original URL path: http://www.markle.org/solr-search?keyword=&page=82 (2016-02-10)
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    information sharing across government in order to protect the nation from terrorist attacks Testimony of Jeffrey H Smith Submitted to the Senate Committee on Homeland Security Governmental Affairs Jeffrey H Smith a member of the Markle Task Force on National Security presents testimony regarding information sharing before the Senate Committee on Homeland Security Governmental Affairs The Markle Task Force on National Security in the Information Age advocates the creation of a trusted information sharing environment The Markle Task Force identifies the following requirements for achieving a trusted environment sustained leadership and strong oversight from all branches of government clear policies processes and guidelines that facilitate collaboration and sharing of information while protecting civil liberties technologies that facilitate sharing while protecting security and privacy The Markle Task Force on National Security in the Information Age This document briefly describes the history work and mission of the Markle Task Force on National Security in the Information Age A list of the Markle Task Force s members and information on how to learn more are also included Testimony of Jeffrey H Smith Submitted to the Subcommittee on Intelligence Information Sharing and Terrorism Risk Assessment of the House Committee on Homeland Security The Markle Task Force s most recent report found that although we have made much progress we are still vulnerable to attack because as on 9 11 we are not able to connect the dots At the same time our civil liberties are at risk because we don t have the government wide policies in place to protect them as more powerful tools for intelligence collection and sharing information emerge The Markle Task Force offers recommendations to the Subcommittee regarding Strong sustained leadership from within the Executive Office of the President and congressional oversight are needed to drive information sharing All government information relevant to national security should be discoverable and accessible to authorized users while audited to ensure accountability Enhanced government wide privacy and civil liberties policies must be developed Meeting the Threat of Terrorism Discoverability Discoverability means users can discover selected values e g who what where when but cannot gain access to the underlying information until the user requesting access is authorized and authenticated This brief defines the potential results of employing discoverability in the government s information sharing system The Markle Task Force identifies discoverability as the first step of an effective system for information sharing and urges the Obama Administration and Congress to consider this concept in national security policy making Meeting the Threat of Terrorism Culture Change In this National Security Brief the Markle Task Force points out that there has been little development the information sharing practices of government agencies and encourages changing the culture of information sharing in government to increase collaboration and strengthen national security The Markle Task Force offers a list of suggestions to the Obama Administration and Congress for augmenting policy and creating incentives for behavioral change Meeting the Threat of Terrorism Protecting Privacy and Civil Liberties in a Networked Information

    Original URL path: http://www.markle.org/solr-search?keyword=&page=83 (2016-02-10)
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