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  • Acknowledgements P9 | Markle | Advancing America's Future
    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 Acknowledgements P9 This paper is a collaborative work of the Personal Health Technology Initiative a major effort by the Markle Foundation Health Program to advocate for patient empowerment through personal health records PHRs and other health information technologies The Markle Foundation wishes to thank the following people for drafting this paper Josh Lemieux Daren Nicholson MD David Lansky PhD and Clay Shirky We also thank the members of the Personal Health Technology Council who reviewed this paper The Council was established within Markle Connecting for Health to identify and recommend solutions for policy challenges affecting the adoption of PHRs and related technologies with a sharp focus on the needs and concerns of consumers Personal Health Technology Council Lead David Lansky PhD Markle Foundation Chair Staff Josh Lemieux Markle Foundation Daren Nicholson MD Members Tim Andrews Health Innovation Partners Wendy Angst CapMed A Division of Bio Imaging Technologies Inc Rodney Armstead MD FACP AmeriChoice United Health Group Annette Bar Cohen MPH National Breast Cancer Coalition Cynthia Baur PhD Office of Disease Prevention and Health Promotion United States Department of Health and Human Services John Benton Epic Systems Corporation Adam Bosworth Google Marc Boutin JD National Health Council Patti Brennan PhD University of Wisconsin Madison Helen Burstin MD MPH Agency for Healthcare Research and Quality United States Department of Health and Human Services Rex Cowdry MD Maryland Health Care Commission Mary Jo Deering PhD National Cancer Institute National Institutes of Health United States Department of Health and Human Services Richard Dick PhD You Take Control Stephen Downs Robert Wood Johnson Foundation John P Driscoll Medco Health Solutions Inc Joyce Dubow AARP Public Policy Institute Esther Dyson CNET Networks Stefanie Fenton Intuit Ed Fotsch MD Medem Inc Peter Frishauf Healthcare Marketing Communications Council Inc Gilles Frydman Association of Cancer Online Resources Inc Janlori Goldman Health Privacy Project Ken Goodman PhD University of Miami Jonathan Hare Resilient Jim Karkanias Microsoft J D Kleinke Omnimedix Institute Linda Kloss RHIA CAE American Health Information Management Association J P Little RxHub LLC Kathleen Mahan SureScripts Jack Mahoney MD Pitney Bowes Inc Phil Marshall MD MPH WebMD Gail McGrath National Patient Advocate Foundation Omid Moghadam Intel Corporation Digital Health Group Jonathan Parker Americans for Health Care Service Employees International Union George Peredy MD Kaiser Permanente HealthConnect Ginger Price Department of Veterans Affairs Alain Rappaport MD PhD Medstory Inc Alison Rein National Consumers League Marie Savard MD Savard Systems Albert Shar PhD Robert Wood Johnson Foundation Clay Shirky New York University Graduate Interactive Telecommunications Program Michael Simko

    Original URL path: http://www.markle.org/health/markle-common-framework/connecting-professionals/acknowledgements-p9 (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    new commitment to protecting each person s privacy One set of obstacles to widespread health information exchange is technical The United States health system is extremely diverse and highly fragmented In addition participants in the system which encompasses large hospital networks individual doctors labs and others use a variety of types of computers and software to store patient information or none at all Some information systems can t communicate with others because they lack standard ways of transporting and presenting information Another set of obstacles to widespread health information exchange has to do with policy particularly privacy concerns Many surveys have shown that Americans are very worried about the privacy of their health information and for good reason Inappropriate access to health information can result in discrimination social embarrassment or worse Making any type of information easier to share by storing and exchanging it electronically may increase the risk that it ends up in the wrong hands Unfortunately there is no failsafe answer to the policy problems associated with sharing health information It is impossible to guarantee 100 percent the privacy of health information even if it stays in paper files Similarly there is no perfect solution to all of the technical challenges To complicate matters some proposals that provide advantages from a technical perspective such as creating one massive database to hold health information for every American or giving each person a new ID number for health records lack practicality and can exacerbate privacy risks What is Markle Connecting for Health Markle Connecting for Health is a public private collaborative made up of leaders and innovators from more than 100 organizations representing a diverse array of private public and not for profit groups Participants are listed at http www markle org health experts impact The Common Framework grew out of the efforts of Markle Connecting for Health a public private collaborative led by the Markle Foundation to find realistic and consistent solutions to the technical and policy challenges associated with health information exchange Markle Connecting for Health has emphasized the necessity of addressing critical policy and technical questions in parallel and considering both from the outset If we are to share health information in a way that is trusted and effective the policies that establish who has access to health information what uses of information are acceptable the extent to which patients can give or withhold access to their information and the design of privacy and security safeguards must all be crafted in parallel with the design and deployment of the technology And the technology choices themselves must incorporate policy objectives that protect patients and our society s values The Big Picture How the Common Framework Works on a Nationwide Basis The concept underlying the Markle Connecting for Health approach is that information exchange can take place among existing and future health care networks over the Internet if all participants adhere to a small set of shared rules a Common Framework of technical and policy guidelines The Common Framework recognizes that some information exchange networks are defined regionally among trusted and well known local partners and others may be national in scope such as a network of pharmacies or based on other business relationships such as a network of cancer centers We call any network that agrees to conform to the Common Framework a sub network organization indicating that it constitutes one element of the larger network of networks scattered across the nation The Common Framework is based upon common non proprietary technical and policy standards that can work with the information systems already in place regardless of the particular hardware and software being used General adherence to this small set of critical requirements will permit rapid attainment of widespread information sharing in support of modern healthcare practice The Common Framework approach is desirable from a technical perspective because it enables the establishment of health information exchange by building on rather than replacing existing infrastructure Because it does not dictate technology choices it allows great latitude for innovation and for tailoring health information exchange networks to meet diverse needs It is desirable from a policy perspective because its design protects patients privacy Personal health information remains in the hands of those who collect it doctors hospitals labs pharmacies and others In each health information exchange network an index called a Record Locator Service lets clinicians find out where the patient information they seek is stored so that they can request it directly from its source Patients and the doctors they trust can decide with whom to share personal health information and for what purposes The key to this approach is the articulation of a small but necessary set of nationally uniform technical and policy guidelines that every organization that wants to share health information can adopt The Common Framework is the embodiment of that essential core From Principles to Practice How the Common Framework Has Evolved Markle Connecting for Health is a collaborative of more than 100 leading private and public organizations including experts in clinical medicine information technology public policy and patient privacy The collaborative is led by the Markle Foundation and funded by both Markle and the Robert Wood Johnson Foundation Its members are committed to bringing about the nationwide sharing of health information for the benefit of patients and those who treat and support them What can the Common Framework do for those interested in health information exchange The Common Framework puts forth a model of health information exchange that Protects patient privacy by allowing health information to remain under local control with the doctors and hospitals patients trust thus avoiding the need for large centralized databases or creation of a national patient ID Avoids large scale disruption and huge up front capital investments by making use of existing hardware and software This flexibility enables innovation and the ability to customize solutions to meet local needs Supports better informed decisions about key policy topics related to sharing health information Establishes trust among collaborating organizations by applying well vetted model contract language in consultation with local advisors to fit their needs The members of Markle Connecting for Health have worked together for several years to tackle some of the most intractable barriers to widespread information sharing In 2004 the collaborative issued its influential Roadmap report Achieving Electronic Connectivity in Healthcare A Preliminary Roadmap from the Nation s Public and Private Sector Healthcare Leaders available at http www markle org publications 842 achieving electronic connectivity health care summary financial incentives recommen The Roadmap defined a set of policy and implementation constraints that any architecture for health information sharing had to meet for one its design had to protect the privacy and security of personal health information The Markle Connecting for Health Steering Group identified a small number of additional constraints including the idea that any solution must build on existing infrastructure rather than requiring completely new technologies or information systems no rip and replace It also sought to define a model of health information exchange that could be demonstrated within one to three years These objectives led Markle Connecting for Health to avoid proposals that would require large scale disruption or be dependent on large up front capital investments Instead we sketched out a model of nationwide health information exchange that is decentralized can be achieved without requiring a new unique patient identifier is capable of working with any underlying hardware and software and is therefore governed by a small set of technical and policy standards called the Common Framework This theoretical model described in the Roadmap was a step forward but the Markle Connecting for Health Steering Group pressed for a demonstrable test in real world communities engaged in health information exchange In late 2004 in cooperation with local partners Markle Connecting for Health embarked on development of a three state prototype of electronic health information exchange based on the Common Framework in Mendocino County CA Indianapolis and Boston Within a year this effort successfully exchanged electronic health information both within and among the three sites The prototype is based on common open non proprietary standards and on the establishment of robust policies to protect the privacy and security of patient information Development of the prototype occurred over a period of 18 months in lockstep with the interdependent work of two Markle Connecting for Health Subcommittees one focused on Technology the other on Policy Some of the most highly regarded experts in the nation grappled with the challenges of translating the Roadmap s principles into practice They collaborated closely with experts in the three sites to both develop and document solutions to problems and the thinking behind them for the benefit of other communities working on health information exchange An important concept articulated by the Roadmap and proven in the field is that decisions about technical architecture must be guided by policy objectives not the other way around Moreover policy objectives must be considered at the beginning of any technical undertaking The Markle Connecting for Health Common Framework Resources for Health Information Exchange is the first product of these efforts It represents just the initial phase of a continuous process of discovery discussion and fieldwork Markle Connecting for Health s Policy Principles Openness and Transparency There should be a general policy of openness about developments practices and policies with respect to personal data Individuals should be able to know what information exists about them the purpose of its use who can access and use it and where it resides Purpose Specification and Minimization The purposes for which personal data are collected should be specified at the time of collection and the subsequent use should be limited to those purposes or others that are specified on each occasion of change of purpose Collection Limitation Personal health information should only be collected for specified purposes should be obtained by lawful and fair means and where possible with the knowledge or consent of the data subject Use Limitation Personal data should not be disclosed made available or otherwise used for purposes other than those specified Individual Participation and Control Individuals should control access to their personal information Individuals should be able to obtain from each entity that controls personal health data information about whether or not the entity has data relating to them Individuals should have the right to Have personal data relating to them communicated within a reasonable time at an affordable charge if any and in a form that is readily understandable Be given reasons if a request as described above is denied and to be able to challenge such denial and Challenge data relating to them and have it rectified completed or amended Data Integrity and Quality All personal data collected should be relevant to the purposes for which they are to be used and should be accurate complete and current Security Safeguards and Controls Personal data should be protected by reasonable security safeguards against such risks as loss or unauthorized access destruction use modification or disclosure Accountability and Oversight Entities in control of personal health data must be held accountable for implementing these information practices Remedies Legal and financial remedies must exist to address any security breaches or privacy violations Markle Connecting for Health s Technology Principles Make It Thin Only the minimum number of rules and protocols essential to widespread exchange of health information should be specified as part of a Common Framework It is desirable to leave to the local systems those things best handled locally while specifying at a national level those things required as universal in order to allow for exchange among subordinate networks Avoid Rip and Replace Any proposed model for health information exchange must take into account the current structure of the healthcare system While some infrastructure may need to evolve the system should take advantage of what has been deployed today Similarly it should build on existing Internet capabilities using appropriate standards for ensuring secure transfer of information Separate Applications from the Network The purpose of the network is to allow authorized persons to access data as needed The purpose of applications is to display or otherwise use that data once received The network should be designed to support any and all useful types of applications and applications should be designed to take data in from the network in standard formats This allows new applications to be created and existing ones upgraded without re designing the network itself Decentralization Data stay where they are The decentralized approach leaves clinical data in the control of those providers with a direct relationship with the patient and leaves judgments about who should and should not see patient data in the hands of the patient and the physicians and institutions that are directly involved with his or her care Federation The participating members of a health network must belong to and comply with agreements of a federation Federation in this view is a response to the organizational difficulties presented by the fact of decentralization Formal federation with clear agreements builds trust that is essential to the exchange of health information Flexibility Any hardware or software can be used for health information exchange as long as it conforms to a Common Framework of essential requirements The network should support variation and innovation in response to local needs The network must be able to scale and evolve over time Privacy and Security All health information exchange including in support of the delivery of care and the conduct of research and public health reporting must be conducted in an environment of trust based upon conformance with appropriate requirements for patient privacy security confidentiality integrity audit and informed consent Accuracy Accuracy in identifying both a patient and his or her records with little tolerance for error is an essential element of health information exchange There must also be feedback mechanisms to help organizations to fix or clean their data in the event that errors are discovered Components of the Common Framework These technology and policy principles guided the specific practical decisions about the architecture specifications and policies that support private and secure sharing of health information across the nation From these Markle Connecting for Health has developed a skeletal framework of technology and policy guides at this early stage we have only put flesh on a few of the bones With regard to policy guides The Markle Connecting for Health Policy Subcommittee developed a list of significant topics based on its members experience with early information exchange networks and their own expertise in law health privacy health care delivery administration and technology The Subcommittee developed recommended policies in each area of significant concern The Subcommittee s work assumes underlying compliance with both HIPAA and existing state laws its work looked at health information exchange in the context of this already existing structure for protecting health privacy As with the technical work the Policy Subcommittee s work is in no way comprehensive In many areas the Subcommittee recognized the need for further policy development but felt it important to establish a foundational consensus on key principles before tackling more complex issues in other areas the Subcommittee simply did not have time to conduct the necessary research and build consensus The development of necessary policies will need to continue alongside the evolution of technical work With regard to technical guides We have provided documentation for the Record Locator Service and the Inter SNO sub network organization Bridge the only novel pieces of infrastructure we propose The Record Locator Service forms the basis of a decentralized model and describes the architectural elements needed for sharing information within communities The Inter SNO Bridge provides the architecture for sharing information among communities or sub networks We have documented clinical data exchange for two use cases only retrieving a patient s medication history and retrieving a patient s laboratory results Other use cases and guides will continue to stress test and evolve the model and will need to be developed and published in the future With regard to model contractual language We have distinguished those issues which need to be addressed uniformly across all health information exchanges from those that can be evaluated and implemented according to local preference Markle Connecting for Health has developed a Model Contract for Health Information Exchange that offers a business framework for leveraging national standards while accommodating local needs Policy Guides How Information is Protected The Architecture for Privacy in a Networked Health Information Environment A foundational policy architecture for privacy and health information technology in a networked environment based on nine principles The Markle Connecting for Health approach dictates that these nine principles be balanced together and considered as part of one package elevating certain principles over others will weaken any overall architectural solution to privacy protection in a networked health information environment Model Privacy Policies and Procedures for Health Information Exchange Model privacy policies designed as a starting point for those working to establish sub network organizations that will utilize a Record Locator Service The policies establish baseline privacy protections designed to apply to all individuals receiving care from an institution participating in a SNO The model policies and procedures are intended to accompany and complement the Model Contract for Health Information Exchange Issues addressed in the document include inter alia policies regarding acceptable uses and disclosures of individual health care information ensuring individual participation in and control of their health information and how to handle individual health information that may be subject to special protections Notification and Consent When Using a Record Locator Service Recommended policies for what an institution or provider participating in the Record Locator Service should be required to do to inform patients and give them the ability to decide not to be listed in the index consistent with the privacy principles articulated in The Markle Connecting for Health Architecture for Privacy in a Networked Health Information Environment Correctly Matching Patients with Their Records A review of methods for optimizing the likelihood of finding as many of a patient s records as possible through the Record Locator Service while minimizing false matches False matches in which records associated with one patient are erroneously linked to another patient can result in incidental disclosures of information which compromise patient privacy The policies addressed also include whether and how such incidental disclosures should be handled under the Markle Connecting for Health Common Framework Authentication of System Users Recommended approaches for sub network organization SNO participants to establish user identity for the purpose of access to health information sharing networks Patients Access to Their Own Health Information The discussion includes a review of the state of the current law on individuals access to their own health care information and then makes recommendations regarding such policies in the context of a Record Locator Service and a health information sharing environment Auditing Access to and Use of a Health Information Exchange The advantages and disadvantages of audit logs some criteria for successful audit logs and issues that sub network organizations should consider in implementing successful audit systems Breaches of Confidential Health Information Recommended policies for addressing breaches in confidentiality of personal health information Technical Guides How Information is Exchanged The Common Framework Technical Issues and Requirements for Implementation A high level description of the technical philosophy embodied in the Markle Connecting for Health prototype This document discusses the basic design principles adopted by Markle Connecting for Health the technical constraints governing the work what subsequent choices were made and why those choices were made Health Information Exchange Architecture Implementation Guide The core technical document governing the message standards required for exchange of Common Framework compliant messages between participating entities within a sub network organizations SNO and exchange of messages between entities in different SNOs This document covers the design of the standard messages used in network communication as well as the operation names used to invoke the required services and the design of the Patient Identification segment used in queries for patient data In addition access to the technical code and test servers created for the prototype is available through www connectingforhealth org In order to make the basic workings of the prototype visible we have provided the source code related files and test servers developed in each of the three Markle Connecting for Health prototype sites Markle Connecting for Health in collaboration with the participating sites has left the test servers available for those who would like to experiment with formatting valid queries and parsing the results In addition each region is making the source code used to handle the incoming queries available for download from the same server hosting the test interface Medication History Standards The standards for expressing a patient s medication history The exchange of medication history was one of two use cases tested in the prototype we adopted a version of the National Council for Prescription Drug Programs NCPDP proposed standard There is considerable work on medication history standards and we anticipate that there will be future changes to this standard in the near term Because the Common Framework maintains a separation between data description and transport updates to the medication history standard will not require re engineering the network to accommodate the new standard Laboratory Results Standards Describes desired future changes to the Laboratory Results Standard to make it more compatible with a multi use networked environment Includes a web link to the Laboratory Results Standard used in exchanges of data in the prototype test proposed ELINCS 2 0 standard There is considerable work on lab results standards and we anticipate that there will be future changes to this standard in the near term Because the Common Framework maintains a separation between data description and transport updates to the lab results standard will not require re engineering the network to accommodate the new standard Background Issues on Data Quality A review of the issues raised by dirty incomplete and inaccurate healthcare data and mechanisms that could be developed and implemented to address these issues This framework also describes the importance of establishing accountability among those responsible for the reliability of data Record Locator Service Technical Background from the Massachusetts Prototype Community Discussion of the technical and design issues of the Record Locator Service as constructed in Massachusetts Provides background on the initial technical conversations the current state of the architecture is documented in The Common Framework Technical Issues and Requirements for Implementation and Health Information Exchange Architecture Implementation Guide Model Contractual Language Key Topics in a Model Contract for Health Information Exchange A brief overview of the elements covered in the full Model Contract for Health Information It is intended to provide a general approach to the issues that health information sharing networks must address to increase the likelihood of success of their own electronic health information exchanges A Model Contract for Health Information Exchange A model contractual agreement containing sample language and descriptive notes regarding issues that both regional and affinity based networks must address to increase the likelihood of success of their own electronic health information exchanges The Model addresses such contractual topics as the implementation of user agreements general disclaimers insurance requirements and enforcement requirements The Model is intended to assist in the organization of a sub network organization by providing a basis upon which to begin drafting that sub network organization s Terms and Conditions All language provided in the Model is intended for illustrative purposes only Each sub network organization will have to draft its Terms and Conditions based upon its own organization operations system and services regulatory environment etc Some of the Model s terms will be inapplicable to some sub network organizations The Model shows where some of these variations might be expected to occur Markle Connecting for Health thanks Lygeia Ricciardi and David Lansky both of the Markle Foundation for drafting this paper Markle Connecting for Health is a large collaborative of volunteers and staff who have achieved an enormous task in this first release of the Common Framework The technical and policy aspects of the Common Framework were developed by two dedicated Subcommittees that worked tirelessly to find common ground on solutions to the tough challenges associated with this work Without the leadership provided by the Subcommittee Chairs Clay Shirky Bill Braithwaite and Mark Frisse it could not have been accomplished We extend our thanks also to the Markle Connecting for Health staff especially to David Lansky Lygeia Ricciardi Jennifer De Pasquale and Stuart Schear We appreciate their insights and ability to coordinate and convey the value of our complex work with alacrity We also recognize Melissa Goldstein who managed the large body of policy work painstakingly attending to every detail Please share your suggestions and feedback with us at email protected 2006 2012 Markle Foundation These works were originally published as part of the Markle Connecting for Health Common Framework Resources for Implementing Private and Secure Health Information Exchange They are made available free of charge but subject to the terms of a License You may make copies of these works however by copying or exercising any other rights to the works you accept and agree to be bound by the terms of the License All copies of these works must reproduce this copyright information and notice Download Overview and Principles 2011 State Healthcare IT Connect Summit Policymakers and leading health IT strategists provide critical insights into state health IT transformation and modernization During the session Fostering a Network of Trust in Health Information Exchange Meredith Taylor Markle s Director of Health explains the foundational policies and practices of the Markle Connecting for Health Common Framework for Private and Secure Information Exchange and provides highlights of Connecting for Health s current efforts to reinforce the framework with specific practices aimed at addressing the current challenges that HIEs face Learn more about this event Accountable Care Organizations as Drivers for Trusted and Valued Information Sharing Markle Connecting for Health a public private collaborative of more than 100 organizations across the spectrum of health care and information technology IT appreciates the opportunity to comment on Accountable Care Organizations ACOs within the Medicare Shared Savings Program The basic concept of an Accountable Care Organization represents a needed shift in priorities for transforming the health sector toward more continuous and cost effective care The proposed rule sets three broad and ambitious aims of better care for individuals better health for populations and lower growth in expenditures In this letter we build upon our past collaborative comments on how the Department of Health and Human Services HHS can foster the trusted information sharing necessary for ACOs to succeed We focus only on key ingredients for the health information sharing and information technology components of ACOs These comments are limited to the health IT and information sharing aspects of the proposed rule Clearly many legitimate questions and concerns about ACOs fall outside this limited area Regardless of how these other issues are addressed and resolved information sharing will be a core requirement for achieving the goals of the program In that regard we comment on four distinct categories Improve decision making throughout the care continuum by leveraging the insights gained from the data received from ACOs Align with and build from the investments in Meaningful Use Adopt and implement a complete trust framework based on Fair Information Practices FIPs that is consistent with the shared set of policy and technology principles developed by the Federal Health IT Task Force Engage patients through improved access to their own health information Health Care Information Technology Markle s Senior Director of Health Initiatives Laura Bailyn shares her perspectives during a panel discussion focusing on health information technology and the ways in which it has the capacity to change different aspects of the delivery system that is impactful and has meaningful use This session will also feature a dialogue on the actions that are needed to promote these efforts to improve health care coordination primary care chronic care as well as in developing new models of care Learn more about this event Common Framework for Private and Secure Information Exchange Introduction to Press Conference David Lansky Markle Foundation Carol Diamond Markle Foundation Stephen Downs Robert Wood Johnson Foundation Panel Discussion Part I David Lansky Markle Foundation Moderator Clay Shirky New York University J Mark Overhage Indiana Health Information Exchange John Halamka CareGroup Health System Will Ross Mendocino Informatics Janlori Goldman Health Privacy Project Gerry Hinkley Pillsbury Winthrop Shaw Pittman LLP Panel Discussion Part II Zoë Baird Markle Foundation Moderator Mark Frisse Vanderbilt University Scott Young Agency for Healthcare Research and Quality Linda Fischetti Veterans Health Administration Dan Garrett Computer Science Corporation Tom Romeo IBM Business Consulting Services Michele Kang Northrop Grumman Health Solutions Hugh Zettel GE Healthcare Integrated IT Solutions Q A David Lansky Markle Foundation Moderator Panelists Connecting for Health Steering Group Members T5 Introduction We live in an era of unprecedented data abundance and aggregation The sheer variety of new information available on the Internet in databases and from other sources has changed the way we conduct business undertake research and communicate Most of the changes are positive Yet increased reliance upon networked data has also introduced new challenges One serious problem we need to address is that of dirty data missing or inaccurate information that resides in and indeed frequently results from the abundance and aggregation of data in our lives today Dirty data can have several pernicious effects In particular it Impacts the quality of care Introduces privacy and other civil liberty concerns Increases costs and inefficiencies Creates liability risks and Undermines the reliability and benefits of information technology IT investments including the potential to streamline service delivery accounting and billing These concerns are particularly important in the medical field where data problems represent the dark side of the tremendous potential offered by the adoption of health IT systems In a networked medical setting dirty data not only introduces economic inefficiencies it may also cost lives In addition the lack of a data quality culture may be a core deterrent for many users in adopting and using health IT today As various regional and affinity based information exchange networks around the country are developing and implementing strategies and architectures to link and share patients data the issue of dirty data will have to be addressed Inaccurate patient data especially if it affects the data fields used to establish individual patient identity through a Record Locator Service1 RLS may be harmful if not mitigated from the outset Dirty patient data has for instance the potential to undermine the matching capabilities of an RLS or to provide for an unacceptable level of false negatives This document considers the growing need to develop a data quality culture at the network level and lists possible issues and options to consider I The Problem By some estimates the problem of dirty data in industry has reached epidemic proportions 2 The problem is equally prevalent and potentially even more alarming in health care 3 In a medical setting dirty data has several consequences First and foremost it can lead to medical errors which can kill or cause long term damage to the health of patients A widely noted 2000 Institute of Medicine report4 estimates for example that between 44 000 and 98 000 lives are lost every year due to medical errors in hospitals alone and that such errors result in an additional 17 to 29 billion in annual healthcare costs Although not all these errors can be attributed to inaccurate data a number of studies5 have shown a link between poor quality data in databases and medical errors and subsequent poor quality of care Further in a networked health care setting the challenge of data accuracy becomes even more critical because a health professional immediately uses the information accessible especially in the case of an acute illness or emergency intervention without any built in step or potential to review its accuracy 6 Conversely improving data quality can increase the quality of care by initiating a positive chain reaction improving the data that clinicians see when the patient is admitted can validate the need for services to the patient and if followed up with the provision of those identified services may provide for better outcomes A study on child mental health services for instance showed that 58 percent of the patients had improved outcomes after a data quality improvement project was instituted 7 Poor data quality can also reduce the accuracy of insurance bills A study analyzing Medicare data found that 2 7 percent of the nearly 11 9 million records in the database approximately 321 300 records contained coding errors 8 Such errors can impact the clinician s and or the patient s insurance reimbursement and or cause additional time to be spent correcting the errors The study also identified the immediate benefits of addressing the errors According to the Medicare study the top 10 coding errors accounted for 70 percent of the total errors By focusing on those 10 coding errors a high percentage of the problem can be addressed instantly saving time and money Dirty data can also have serious consequences for patient privacy especially in a networked environment A single and originally isolated error in a data set can be magnified and thus pose a more serious privacy risk as it is propagated into various other data sets systems and warehouses while decreasing at each step the potential to redress the error 9 On the other hand a networked and aggregated data environment obviously undermines the privacy by obscurity paradigm that was often the sole privacy protection available in an off line world While poor quality data can erode privacy strong privacy protections can enhance the quality of data and subsequent health care for example by increasing trust and therefore increasing the amount of data that patients are willing to share with medical providers 10 Data accuracy is therefore one of the nine principles underpinning The Markle Connecting for Health Architecture for Privacy in a Networked Health Information Environment 11 Despite the severity of the problem the risks posed by dirty data often go unrecognized in many ways the problem of inaccurate data remains a low priority for companies and organizations 12 It is critical to understand the problem and to develop strategies for minimizing data inaccuracies and the potential harm they cause II Understanding Dirty Data Definitions Causes and Locations Data quality is broadly defined as the totality of features and characteristics of a data set that bear on its ability to satisfy the needs that result from the intended use of the data 13 Data accuracy is one of the foundational features that contribute to data quality14 along with other attributes such as timeliness relevancy representation and accessibility15 In addition data quality has two essential components content i e the information must be accurate and form i e the data must be stored and presented in a manner that makes it usable These definitions are important to keep in mind when considering ways to minimize data inaccuracies as they illustrate why the task of fixing dirty data requires more than merely providing right information Equally important when developing a strategy to increase data quality is identification of the underlying causes of dirty data Two broad categories of errors can be distinguished systematic and random Among the sources of systematic errors are programming mistakes bad definitions for data types or models violations of rules established for data collection poorly defined rules and poor training Random errors can be caused by keying errors data transcription problems illegible handwriting hardware failure e g breakdown or corruption and mistakes or deliberately misleading statements on the part of patients or others providing primary data This is obviously not an exhaustive list but a few examples of the types of errors that may occur It is worth noting that according to the Data Warehousing Institute 76 percent of all errors across sectors and setting result from data entry This suggests the critical role

    Original URL path: http://www.markle.org/publications?term_node_tid_depth=15&tid_1=All&date_filter[value]=&page=5 (2016-02-10)
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  • Council Launches Nation's First Online Encyclopedia of Terrorism | Markle | Advancing America's Future
    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 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 Council Launches Nation s First Online Encyclopedia of Terrorism Publication Date January 24 2002 NEW YORK NY The Council on Foreign Relations today launched a unique online encyclopedia of terrorism and America s response to give the public an easy to read authoritative primer on what the experts know and don t know Our aim is to give people one reliable and understandable site to get briefed on the basics and sort out fact from fiction said Council President Leslie H Gelb Written by a Council team and drawing upon leading experts will provide up to date authoritative information in a crisp and clear question and answer format We ll recheck and update the answers as events change we ll keep adding new Q A fact sheets and if we ever find that something s not fully accurate we ll fix it said Gelb Our watchword is simple reliable information in troubled times Produced in cooperation with the Markle Foundation the new site also features This Week in the War on Terrorism summarizing new events in key areas such as the Investigation Homeland Defense New Legislation and Global Repercussions of 9 11 The goal of terrorism is to inspire fear one effective antidote to fear is the facts said Zoë Baird President of the Markle Foundation By partnering with the Council on Foreign Relations one of the nation s foremost institutions dedicated to increasing the public s understanding of the world we are able to provide trustworthy and timely answers to the questions on the minds of millions of people around the world Content on the site has been carefully researched reported and written by the Council on Foreign Relations the nation s leading foreign policy organization The editorial team is led by Warren Bass a former associate editor of Foreign Affairs who holds a Ph D

    Original URL path: http://www.markle.org/about-markle/media-release/council-launches-nations-first-online-encyclopedia-terrorism (2016-02-10)
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  • Moving from 'Need to Know' to 'Need to Share': A Review of the 9-11 Commission's Recommendations | Markle | Advancing America's Future
    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 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 Moving from Need to Know to Need to Share A Review of the 9 11 Commission s Recommendations Publication Date Tuesday August 3 2004 Publication Source House Committee on Government Reform On behalf of the Markle Task Force on National Security Dempsey discusses sharing information more efficiently through a SHARE Network privacy and due process guidelines accountability and internal oversight

    Original URL path: http://www.markle.org/information-sharing-collaboration-national-security/moving-need-know-need-share-review-9-11 (2016-02-10)
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  • Past Work in National Security | Markle | Advancing America's Future
    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 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 Past Work in National Security By the end of the twentieth century information technology and Internet policy emerged as major areas of interest for Markle s research Our focus on advancing national security in a connected world evolved from earlier initiatives that strove to define the ways in which the responsible use of technology can be a force for changing the world in positive ways Energy Security An effective energy security strategy defines the federal agency infrastructure required for stemming the risks of climate change and shifting the nation away from geostrategic energy dependency Policy for a Networked Society

    Original URL path: http://www.markle.org/national-security/past-work-national-security (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    CEO of LinkedIn Weiner joined LinkedIn in December 2008 and under his leadership LinkedIn has rapidly expanded its global platform to 23 languages and 30 offices around the world grown its membership base from 33 million to more than 332 million members and increased its revenue to more than 1 5 billion in 2013 Before LinkedIn Weiner was an executive in residence at Accel Partners and Greylock Partners where he advised the firms consumer technology portfolio companies and evaluated new investment opportunities Previously Weiner served as executive vice president of Yahoo s Network Division a business that generated 3 billion in annual revenue with more than 3 000 employees and responsibility for many of the company s consumer facing and industry leading products Prior to joining Yahoo in 2001 Weiner spent more than six years at Warner Bros where he helped oversee the company s online efforts and developed the initial business plan for Warner Bros Online in 1994 In addition to LinkedIn Weiner serves on the board of directors for Intuit Inc DonorsChoose org and Malaria No More He holds a BS in Economics from The Wharton School at the University of Pennsylvania Robert K Steel Robert K Steel is Chief Executive Officer at Perella Weinberg Partners Prior to joining the Firm he was New York City s Deputy Mayor for Economic Development where he was responsible for the Bloomberg Administration s five borough economic development strategy and job creation efforts and oversaw such agencies as the Department of Housing Preservation and Development Department of City Planning Department of Small Business Services NYC Economic Development Corporation and NYC Company and chaired the Brooklyn Bridge Park board A key initiative of Mayor Bloomberg s Administration was to encourage and grow the technology sector of New York City s economy and Steel led the applied sciences initiative which established the Cornell Technion campus on Roosevelt Island and New York University Center for Urban Science and Progress initiative in Brooklyn New York He is a graduate of Duke University and the University of Chicago s Booth School of Business Steel is Chairman of the Aspen Institute s Board of Trustees and has served as Chairman of Duke s Board of Trustees Senior Fellow at the Harvard Kennedy School of Government a member of the FDIC Advisory Committee on Economic Inclusion Chairman of The After School Corporation and Co Founder of SeaChange Capital Partners an organization dedicated to helping nonprofits grow Shirley Ann Jackson The Honorable Shirley Ann Jackson Ph D is the 18th president of Rensselaer Polytechnic Institute where she has led an extraordinary transformation since 1999 Described by Time Magazine as perhaps the ultimate role model for women in science Jackson a theoretical physicist has held senior leadership positions in academia government industry and research In 2014 United States President Barack Obama appointed Jackson as Co Chair of the President s Intelligence Advisory Board which assesses issues pertaining to the quality quantity and adequacy of intelligence activities Jackson also serves on the U S Secretary of State s International Security Advisory Board and the U S Secretary of Energy Advisory Board From 2009 to 2014 Jackson served on the President s Council of Advisors on Science and Technology Before taking the helm at Rensselaer Jackson was Chairman of the U S Nuclear Regulatory Commission from 1995 to 1999 Jackson is Vice Chair of the Board of Regents of the Smithsonian Institution a Life Member of the MIT Corporation and serves on the boards of major corporations that include FedEx Medtronic and IBM She is an international fellow of the British Royal Academy of Engineering and a member of the U S National Academy of Engineering Among many awards and accolades Jackson has received the Vannevar Bush Award from the National Science Board Joichi Ito Joichi Ito is director of the Massachusetts Institute of Technology Media Lab He is chair of Creative Commons on the board of the MacArthur Foundation on the board of trustees of the Knight Foundation and co founder and board member of Digital Garage an Internet company in Japan He is a member of the IT Strategic Headquarters of the Japanese cabinet He has created numerous Internet companies and was an early stage investor in Twitter Kickstarter and Path among others In 2011 Ito was chosen by Nikkei Business magazine as one of the 100 most influential people for the future of Japan and by Foreign Policy magazine as one of the Top 100 Global Thinkers and he received the Lifetime Achievement Award from the Oxford Internet Institute in recognition of his role as one of the world s leading advocates of Internet freedom He is a board member of The New York Times Company John Engler John Engler is president of the Business Roundtable BRT an association of chief executive officers of leading U S corporations that produce 7 4 trillion in annual revenues and employ more than 16 million people A former three term governor of Michigan Engler assumed leadership of Business Roundtable in January 2011 after serving six years as president and CEO of the National Association of Manufacturers As BRT president Engler brings CEO expertise and insights to bear on major challenges facing the United States including global competitiveness innovation economic growth and job creation BRT member CEOs lead global companies that invest 158 billion annually in research and development equal to 62 percent of private U S R D spending In addition they pay more than 200 billion in dividends to shareholders and generate more than 540 billion in sales for small and medium sized businesses annually Through landmark reports like Taking Action for America A CEO Plan for Jobs and Economic Growth 2012 It s Time to Act for America s Future 2013 and Invested in America A Growth Agenda for the U S Economy 2014 Business Roundtable and Engler promote policies to achieve more robust economic growth and hiring These priorities include a restructuring of the nation s system of taxation

    Original URL path: http://www.markle.org/resources/rework-america/video/about-markle/event/general-markle-financial-information/health/rework-america/video/economic/commentary-rework-america-members?term_node_tid_depth=All&tid_1=All&date_filter[value]=&page=6&tid=All (2016-02-10)
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  • Creating Economic Opportunity in Cities Around the World | Markle | Advancing America's Future
    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 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 Creating Economic Opportunity in Cities Around the World Publication Date Wed 06 24 2015 Rework America Connected s goal is to address the middle skills gap by helping people find local job opportunities and learn the middle skills they need article link http blog linkedin com 2015 06 24 creating economic opportunity in

    Original URL path: http://www.markle.org/about-markle/in-the-news/creating-economic-opportunity-cities-around-world (2016-02-10)
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  • New Markle Foundation Book Points the Way Forward On Education and Opportunity | Markle | Advancing America's Future
    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 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 New Markle Foundation Book Points the Way Forward On Education and Opportunity Publication Date Wed 06 24 2015 The Markle Foundation s working group Rework America has just a released a new book America s Moment which explains and provides solutions to the crisis article link http www huffingtonpost com felix w ortiz iii new

    Original URL path: http://www.markle.org/about-markle/in-the-news/new-markle-foundation-book-points-way-forward-education-and-opportunity (2016-02-10)
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