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    Videos Search Results Search A New Model for Global Internet Governance Zoe Baird and Stefaan Verhulst write on the World Summit on the Information Society in Geneva the need for a new model of governance and the importance and role of civil society It came and went quietly but the recently concluded World Summit on the Information Society WSIS in Geneva may represent something of a watershed moment in the history of the Internet For all their differences governments coalesced around the need to define and develop some form of global governance for the Internet The Declaration of Principles agreed upon on the final day of the meeting refers to the need for management of the Internet Remodeling the US Government for Energy Security Initial Findings from the Big Energy Map This working paper covers energy security strategy the role of the executive office of the president and the federal agency infrastructure for implementing strategy The President Elect outlined the main elements of a strategy to stem the risks of climate change and shift the nation away from geostrategic energy supply vulnerability In keeping with his campaign speeches his vision centered on Innovation in basic research into alternative and renewable fuels end use technologies and propagation and commercialization of science and technology Job creation green jobs can be an important part of the economic recovery and address the nation s energy and environmental challenges at the same time International cooperation especially in accomplishing climate change agreements Partnership focused on the private sector states and Congress Grassroots Journalism By the People For the People Grassroots journalists are challenging the traditional news industry transforming the one way flow of information into a conversation Aiming to go beyond the initial news boundaries these readers turnedreporters are publishing in real time to a worldwide audience via the Internet The impact of their work is just beginning to be felt by professional journalists and the newsmakers they cover In We the Media Grassroots Journalism by the People for the People nationally known business and technology columnist Dan Gillmor tells the story of this emerging phenomenon and sheds light on this deep shift in how we make and consume the news Using Information and Communications Technology to Address Critical Public Needs Topics include heightened focus in a changed world the shifting domestic environment global opportunity and risk strategy operations and transitions at Markle Policy for a Networked Society Information Technologies for Better Health Interactive Media for Children the Opportunity Fund and moving forward Dr Herbert Pardes Nomination Letters Zoe Baird s letter to HHS in support of Dr Herbert Pardes nomination to serve on the American Health Information Community representing hospitals David Lansky Nomination Letters A letter of nomination for David Lansky for the consumer privacy seat on the AHIC and a letter from Zoe Baird in support of that nomination Leadership for Change In July 2001 G8 Leaders endorsed the Genoa Plan of Action a product of the work of the Digital Opportunities Task Force

    Original URL path: http://www.markle.org/solr-search?keyword=&page=90 (2016-02-10)
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  • A New Model for Global Internet Governance | Markle | Advancing America's Future
    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 A New Model for Global Internet Governance Publication Date Thursday January 1 2004 Zoe Baird and Stefaan Verhulst write on the World Summit on the Information Society in Geneva the need for a new model of governance and the importance and role of civil society It came and went quietly but the recently concluded World Summit on the Information Society WSIS in Geneva may represent something of a watershed moment in the history of the Internet For all their differences governments coalesced around the need to define and

    Original URL path: http://www.markle.org/publications/211-new-model-global-internet-governance (2016-02-10)
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  • Grassroots Journalism By the People For the People | Markle | Advancing America's Future
    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 Grassroots Journalism By the People For the People Publication Date Thursday July 1 2004 Grassroots journalists are challenging the traditional news industry transforming the one way flow of information into a conversation Aiming to go beyond the initial news boundaries these readers turnedreporters are publishing in real time to a worldwide audience via the Internet The impact of their work is just beginning to be felt by professional journalists and the newsmakers they cover In We the Media Grassroots Journalism by the People for the People nationally

    Original URL path: http://www.markle.org/publications/209-grassroots-journalism-people-people (2016-02-10)
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  • Dr. Herbert Pardes' Nomination Letters | Markle | Advancing America's Future
    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 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 Dr Herbert Pardes Nomination Letters Publication Date Monday August 8 2005 Zoe Baird s letter to HHS in support of Dr Herbert Pardes nomination to serve on the American Health Information Community representing hospitals Dr Herbert Pardes Nomination Letters Our Mission Markle works to realize

    Original URL path: http://www.markle.org/publications/206-dr-herbert-pardes-nomination-letters (2016-02-10)
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  • David Lansky Nomination Letters | Markle | Advancing America's Future
    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 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 David Lansky Nomination Letters Publication Date Monday August 8 2005 A letter of nomination for David Lansky for the consumer privacy seat on the AHIC and a letter from Zoe Baird in support of that nomination David Lansky Nomination Letters Our Mission Markle works to

    Original URL path: http://www.markle.org/publications/205-david-lansky-nomination-letters (2016-02-10)
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  • An Accountability Framework for the Internet | Markle | Advancing America's Future
    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 An Accountability Framework for the Internet Publication Date Monday June 14 2004 Describes Markle s major public opinion research effort focusing on the question of accountability on the Internet This research forms the basis for the development of an Accountability Framework which in turn provides policymakers the public public advocates press and industry leaders with concrete information on what Internet users and non users alike expect from the range

    Original URL path: http://www.markle.org/publications/199-accountability-framework-internet (2016-02-10)
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  • Markle Program Highlights: 1999-2004 | Markle | Advancing America's Future
    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 Markle Program Highlights 1999 2004 Publication Date Saturday May 1 2004 Publication Source Markle Markle program highlights for the period 1999 2004 include Information Technology for Better Health Policy for a Networked Society and Interactive Media for Children Over the last two years the Markle Foundation has primarily focused its work in two areas where information technology IT holds great promise to benefit our society health and national security This focus grew out of a broader undertaking initiated in

    Original URL path: http://www.markle.org/publications/197-markle-program-highlights-1999-2004 (2016-02-10)
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  • Search | Markle | Advancing America's Future
    be limited to the necessary policies and procedures that must be commonly defined and agreed upon to achieve these two high level objectives Clearly articulating a high level mission is critical for prioritizing strategic objectives and addressing issues appropriately as they emerge over time In the context of the Markle Connecting for Health Common Framework for Private and Secure Health Information Exchange adopting two high level goals helped to circumscribe the scope of efforts these two goals include the following 1 improving health while establishing trust and 2 assuring interoperability while encouraging innovation Accountability Accountability is a vital element of any governance process and should include procedures for the submission and handling of complaints related to policy violations In addition a clear and public dispute resolution process should be developed Annual reports independent audits and external reviews are other good methods of ensuring accountability and identifying areas for appropriate enforcement Health information sharing efforts have a range of accountability and enforcement mechanisms to choose from to best fit their particular objectives and circumstances but the existence of each should be shared publicly The implementation of an oversight committee is one way to ensure that mechanisms are put in place and maintained effectively Additional information on accountability and oversight can be found in the Policies in Practice Mechanisms for Oversight Accountability and Enforcement The Model Contract Update and More Feature In depth look at how governance efforts effectively engage consumers Meaningful consumer participation in both the establishment of policies and their implementation and enforcement is a necessity Having the perspectives of patients and families is vitally important to sound governance practices Many consumers and consumer advocates are well informed about health care issues and can both articulate and develop patient centered policies and practices Why is involving consumers beneficial 10 Consumers and their advocates have the unique ability to represent and give voice to the needs and wants of patients and families because Consumers and their advocates are in regular contact with their constituents understand their experiences and views and can offer a perspective that is informed by a diversity of patient experiences from the underserved to seniors to patients with specific diseases as well as their own personal encounters with the health care system Consumers and their advocates can be highly effective and trusted distributors of information to consumers They typically have a variety of ways in which they communicate with their constituencies including websites newsletters broadcast e mails conferences and mailing lists Additionally consumer advocates can connect governance bodies with their constituencies to solicit input on governance projects policies and procedures Consumers and their advocates may have earned the respect of community members and established relationships with health information sharing participants as well as policy makers and elected and appointed community leaders These relationships can be used to communicate quickly and effectively with the community and can help mobilize a broad base of consumers to take actions when appropriate for example when commenting on or approving proposed governance policies Consumers and their advocates may be well integrated into the communities they serve and can therefore help ensure that the governance processes are resulting in decisions and practices that benefit the community Consumers and their advocates can function as translators by promoting the work of health information sharing efforts in ways that resonate with and are meaningful to the public Definition of a consumer advocate or consumer representative 11 Most often a consumer advocate is an individual who works at a nonprofit mission oriented organization that represents consumer interests The distinguishing features of such an organization include an emphasis on the needs and interests of consumers and the public interest without conflicts of interest The definition of consumers and their advocates or representatives needs to be flexible to allow communities to pick the most appropriate participants For example local educators faith leaders or social workers can represent the public interest or patient or family advocates can be excellent consumer representatives Individual consumers and patients also can be effective consumer advocates Those selected to represent consumers must be able to do so without competition or hidden agendas Approaches to meaningful multi participant engagement including consumers and their advocates Clearly define roles and responsibilities With the active involvement of all participants a governance process should consider and define the best roles for specific members Thinking through roles and responsibilities on the front end makes it more likely that they will be successfully fulfilled Once these roles have been decided expectations should be clearly articulated in order to protect against ambiguity or misunderstanding Be inclusive Participant roles should be decided upon collaboratively with all participants which will aid in integrating consumer advocates into the governing process as partners and allies Ensure participation on equal footing Effective involvement will be sustained only if all participants regardless of affiliation are offered leadership and decision making opportunities Governance processes should identify and implement best practices in decision making and consensus building for diverse groups and ensure that the various participant perspectives are not only represented and accounted for but done so proportionally to other participants Support Some participants such as consumers and their advocates may not be affiliated with businesses or corporate entities and the ability of those in the non profit sector to participate in governance processes and attend meetings and other events may require some form of support In addition the objectives and day to day needs of governance processes will continuously evolve In order to keep all participants meaningfully engaged both the individuals and the governance processes as a whole need to be supported This assistance can improve understanding of complex health information sharing issues and help all governance participants constructively engage in discussions Examples of such support include Opportunities to shape meeting agendas ahead of time Pre meeting briefings and education efforts on complex topics including distribution of fact sheets and supporting documents Opportunities for post meeting discussion in order to clarify discussion topics and answer questions as needed Access to outside educational and contextual resources As needed outreach to other participants between meetings and Establishment of communication channels for members between meetings such as listservs and conference calls Back to top Appendix The Current Landscape of Governance at the National Level Today a widely distributed set of governance bodies exists to address the policy and technology aspects of health information sharing through federal and state government agencies federal and state legislative committees industry associations public private collaborations and through several interim public advisory groups created by the 2009 HITECH Act Coordination with those existing health information sharing governance efforts and processes is key to prevent duplication and confusion Federal Executive Agencies The Office of the National Coordinator for Health Information Technology ONC The Office of the National Coordinator for Health Information Technology within the Department of Health and Human Services HHS is the principal federal entity charged with coordination of nationwide efforts to facilitate health information sharing The position of National Coordinator was created in 2004 through an Executive Order and formally established in the Health Information Technology for Economic and Clinical Health Act HIEECH Act of 2009 The HITECH Act provides ONC with the authority to promulgate regulations and guidance to support the development of an interoperable private and secure nationwide health information technology infrastructure Please note that as of March 2012 ONC anticipates that it will release an Advanced Notice of Proposed Rule Making on NwHIN governance during the first quarter of 2012 This rule will inform the development operations and oversight of the Nationwide Health Information Network In addition two ONC offices in particular are important from a governance perspective for health information sharing efforts The Office of the Deputy National Coordinator for Programs Policy is responsible among other things for developing the mechanisms for establishing and implementing standards necessary for nationwide health information sharing formulating policy for the privacy and security of health information and developing policies as may be otherwise necessary for implementing its mission The Office of the Chief Privacy Officer is responsible for advising the National Coordinator on privacy security and data stewardship of electronic health information and coordinating ONC s efforts with similar privacy officers in other federal agencies state and regional agencies and foreign countries ONC works with two Federal Advisory Committees FACAs established by the HITECH Act The Health IT Policy Committee makes recommendations to the National Coordinator on a policy framework for the development and adoption of a nationwide health The Health IT Standards Committee is charged with making recommendations to the National Coordinator for Health IT on standards implementation specifications and certification criteria for the electronic exchange and use of health information In developing harmonizing or recognizing standards and implementation specifications the Standards Committee will also provide for the testing of the same by the National Institute for Standards and Technology NIST Office for Civil Rights OCR The Office for Civil Rights within HHS implements and enforces a number of federal regulations including the HIPAA Privacy Rule which protects the privacy of individually identifiable health information HIPAA Security Rule which sets national standards for the security of electronic protected health information Confidentiality provisions of the Patient Safety Rule which protect identifiable information being used to analyze patient safety events and improve patient safety and the Interim final breach notification regulations requiring HIPAA covered entities and their business associates to provide notification following a breach of unsecured protected health information Centers for Medicare and Medicaid Services CMS The HITECH Act established programs under Medicare and Medicaid administered by Centers for Medicare and Medicaid Services to provide incentive payments to eligible providers and hospitals for the meaningful use of certified electronic health record EHR technology The programs began in 2011 and are designed to spur the use of EHRs to improve the quality safety and efficiency of health care Other important Federal entities affecting health information sharing Governance in alphabetical order Agency for Healthcare Research and Quality AHRQ Centers for Disease Control and Prevention CDC Department of Defense DoD Federal Trade Commission FTC Food and Drug Administration FDA National Institutes of Health National Library of Medicine NIH NLM Veterans Affairs VA Congressional Committees Several Congressional committees have jurisdiction over governance for health information efforts The main committees include House of Representatives Science and Technology Committee Technology and Innovation Subcommittee Energy and Commerce Committee Subcommittee on Health Ways and Means Committee Subcommittee on Health Senate Committee on Health Education Labor Pensions HELP Committee Committee on Finance Subcommittee on Health Care Private Entities There are a number of private entities currently conducting some governance functions for health information efforts These include Various ONC Authorized Testing and Certification Bodies ONC ATCB who are required to test and certify EHRs against certification criteria defined by the Secretary of HHS Examples include Surescripts LLC ICSA Labs SLI Global Solutions InfoGard Laboratories Inc Certification Commission for Health Information Technology CCHIE and the Drummond Group Inc DGI Numerous Standard Developing Organizations SDOs are working on developing interoperable health information sharing solutions These include among others ASTM CPT DICOM Health Level 7 HISB IEEE IOM Patient Safety Data Standards ICD 9CM LOINC MedBiquitous NCPDP NDF RT and RxNorm SNOMED UMLS and X12 The memberships of these organizations differ widely but are mainly composed of private companies State and Local Entities Across the United States numerous entities and organizations have emerged to enable the movement and exchange of health related information Two broad categories can be distinguished from a health information sharing governance perspective Regional Extension Centers RECs were established and funded by the American Recovery and Reinvestment Act of 2009 to enable healthcare practitioners to receive local technical assistance guidance and information on best practices in the deployment adoption and use of electronic health records They are designed to address unique community requirements and to support and accelerate provider small and rural in particular efforts to become meaningful users of EHRs A map of these RECs can be found at ONC s website Health Information Exchange HIE or Health Information Organizations HIOs are efforts and organizations that govern the exchange of health related information among independent and disparate entities The relationship between HIE and HIOs can vary across and within states For instance an HIO may be the legal entity governing the activity of HIE while at the same time be the entity providing the physical infrastructure for HIE services Or an HIO may be the legal entity governing the activity of health information exchange while a separate entity or collaborative provide the physical infrastructure A comprehensive overview of HIE HIOs across the United States is provided by HIMSS and can be found at HIMSS State HIT Dashboard In addition ONC s State HIE Cooperative Agreement Program funds states efforts to rapidly build capacity for exchanging health information across the health care system both within and across states Program participants can be found at State Health Information Exchange Cooperative Agreement Program Several cross state initiatives exist as well aimed at coordinating or providing assistance in the area of governance for health information sharing efforts State Health Policy Consortium SHPC is facilitating groups of states in resolving policy issues at a concrete level to enable the exchange of health information across state lines Through the SHPC ONC s contractor RTI International provides support services such as subject matter experts meeting resources policy and legal research and travel to approved multistate Consortium meetings State Alliance for eHealth is a consensus based executive level body of state elected and appointed officials formed to address the unique role state governments can play in facilitating adoption of interoperable electronic HIE It is also intended to be a forum through which stakeholders can work together to identify new inter and intrastate based policies and best practices and explore solutions to programmatic and legal issues related to the exchange of health information State level Health Information Exchange Consensus Project s main objective is to provide a forum for ONC to work with states to ensure all health information exchange activities throughout the Unites States align This is a forum that enables ONC to disseminate information about the national agenda and for the states based efforts to inform the federal government thereby enabling a nationwide alignment of all health information sharing activities Back to top The Policies in Practice apply the term health information sharing effort broadly to refer to any initiative that supports the electronic exchange of health information between data holders Similar terminology includes health information exchange HIE regional health information organization RHIO and sub network organization SNO Amalia R Miller and Catherine E Tucker Privacy Protection and Technology Diffusion The Case of Electronic Medical Records Management Science 55 no 7 2009 1077 093 James G Anderson Social Ethical and Legal Barriers to E Health International Journal of Medical Informatics 76 no 5 2007 480 83 The 2009 HITECH Act which provides states with funds to accelerate the development of statewide HIEs also called for the development of the Nationwide Health Information Network which comprises a set of policies standards and services that enable the Internet to be used for secure and meaningful exchange of health information The 2009 HITECH Act also mandated the Office of the National Coordinator to develop a mechanism for NHIN Governance Health Information Technology for Economic and Clinical Health HITECH Act Title XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act of 2009 ARRA Pub L No 111 5 123 Stat 115 February 17 2009 codified at 42 U S C 300jj et seq 17901 et seq http www gpo gov fdsys pkg BILLS 111hr1enr pdf BILLS 111hr1enr pdf accessed on February 22 2012 Progress of this upcoming rulemaking can be tracked at http healthit hhs gov portal server pt community healthit hhs gov regulations and guidance 1496 Office of the National Coordinator for Health Information Technology Transcripts of Meetings of the HIT Policy Committee Meeting of February 1 2012 23 http healthit hhs gov portal server pt gateway PTARGS 0 0 6010 1814 17824 43 http 3B wci pubcontent publish onc public communities content files 20120201 hitpc transcript draft pdf accessed on March 12 2012 The cycle is adapted from and based upon political science and public policy literature that describes policymaking processes in a variety of settings Among the key sources used to develop the cycle include Public Policy making An Introduction Anderson 2000 A Practical Guide for Policy Analysis The Eightfold Path to More Effective Problem Solving Bardach 2000 An Introduction to the Policy Process Birkland 2001 Top Down Policymaking Dye 2001 Citizens as Partners OECD Handbook on Information Consultation and Public Participation in Policy making Organisation for Economic Cooperation and Development Gramberger 2001 Downloadable from the OECD Website Beyond the New Public Management Changing Ideas and Practices in Governance Theories of the Policy Process Munger 2000 and Policy Paradox the Art of Political Decision Making Stone 2002 This model for Consumer Engagement was adapted from the resources available from the National Partnership for Women Families Quality Tool Box This model for Consumer Engagement was adapted from the resources available from the National Partnership for Women Families Quality Tool Box Definition courtesy of the National Partnership for Women Families www nationalpartnership org 2012 Markle Foundation This work was originally published as part of the Markle Connecting for Health Common Framework Policies in Practice for Health Information Sharing and is made available subject to the terms of a License You may make copies of this work however by copying or exercising any other rights to the work you accept and agree to be bound by the terms of the License All copies of this work must reproduce this copyright information and notice Individual Access The document you are reading is part of the Markle Connecting for Health Common Framework for Private and Secure Health Information Exchange Markle Common Framework The Markle Common Framework includes a set of foundational policy and technology guides published in 2006 In April 2012 a set of Policies in Practice was published to further specify these foundational documents and address a range of critical health information sharing implementation needs identified by experts working in the field Contents Executive Summary I What is the Markle Common Framework for Networked Personal Health Information and when does it apply to health information sharing efforts II Why is consumer access important and how are health information sharing efforts considering a role in helping to provide access for individuals III What are the components of the Framework and how can they be incorporated in the procurement process for personal health information services IV What is a good starting point for individual access Appendix A Appendix B Executive Summary Providing individuals access to their own information is well rooted in Fair Information Practice Principles FIPPs and a basic expectation for health IT Convenient access to one s own personal health information serves as a building block to helping people lead healthier lives and get higher quality more cost effective care The Markle Connecting for Health Common Framework for Networked Personal Health Information recommends practices that encourage appropriate handling of personal health information as it flows to and from electronic personal health records PHRs and similar applications or supporting services It is built upon a set of FIPPs based core principles that provide the foundation for managing personal health information within consumer accessible data streams Recently adopted laws and related policies have accelerated efforts to connect consumers to their health care providers and their own information The ability for individuals to log in securely online to view and download pertinent health information is a good starting place for enabling such access This Policies in Practice outlines the basic requirements for giving patients access to personal health information through a download capability It draws upon consensus based recommendations reflected in the Markle Common Framework for Networked Personal Health Information and the Markle Connecting for Health Policies in Practice The Download Capability Back to top I What is the Markle Common Framework for Networked Personal Health Information and when does it apply to health information sharing efforts 1 The Markle Common Framework for Networked Personal Health Information published in 2008 was developed and supported by 56 organizations representing technology companies health insurers provider groups and medical professional societies consumer and patient advocacy groups and privacy experts This broad support reflects a consensus on policy and technology practices for the storage and flow of personal health information into and out of consumer accessible applications such as electronic personal health records PHRs We use the term consumer access services for organizations that provide individuals with online connections to personal health information and services Consumers may be offered such services by a variety of organizations ranging from existing health care entities e g providers payers pharmacies self insured employers to new entrants to the health sector e g technology companies employer coalitions or state or regional health information sharing efforts The Markle Common Framework for Networked Personal Health Information is intended for any organization providing consumer access services regardless of whether it is covered by the Health Insurance Portability and Accountability Act HIPAA a business associate of a HIPAA covered entity or outside of the HIPAA regulatory purview The Markle Common Framework approach has been applied to create two bodies of work related to the following specific health information technology IT contexts The Markle Common Framework for Private and Secure Health Information Exchange released in 2006 The Markle Common Framework for Networked Personal Health Information released in 2008 Purpose Helps health information networks to share information among their members and nationwide while protecting privacy and allowing for local autonomy and innovation Purpose Recommends practices that encourage appropriate handling of personal health information as it flows to and from electronic PHRs and similar applications or supporting services Focus Specific to the context of the electronic exchange of patient information among health professionals and health care entities Focus Specific to the context of connecting individuals online to their own information such as via electronic PHRs or to other health related services and applications that use the individual s personal health information Health information sharing efforts should implement all the elements of the Markle Connecting for Health Common Framework for Private and Secure Health Information Exchange for electronic exchange of patient information among health professionals and health care entities If a health information sharing effort is also going to play a role in helping providers give patients access to their own information then the policies and practices of the Markle Common Framework for Networked Personal Health Information should also be applied to address the specific function of connecting individuals online to their own information As we outline in Questions 2 and 4 below many health information sharing efforts are contemplating access for individuals through a variety of models including service models for participating doctors and hospitals to attain the patient engagement requirements of the Meaningful Use MU financial incentives Back to top II Why is consumer access important and how are health information sharing efforts considering a role in helping to provide access for individuals Providing individuals with access to information captured about them is well rooted in Fair Information Practice Principles FIPPs and is a basic expectation for health IT Convenient access to one s own personal health information is a building block to helping people live healthier lives and get higher quality and more cost effective care Roughly two thirds of the American public and doctors support an individual s ability to view and download his her personal health information online according to a recent Markle Survey on Health in a Networked Life 2 By giving individuals convenient access to copies of their own information organizations can help patients communicate better with health care providers and take an active role in transforming health care Network enabled efficiencies and safety improvements are more likely to occur if individuals and health care professionals act as partners who share access to and responsibility for updating personal health information We describe this potential in the Markle Common Framework Consumers as Network Participants Juan Alaniz Washington State Just as the goal for providers is not just acquisition of health IT it s about them using health IT to transform how they deliver health care For consumers the goal is not just that they access their health information electronically The goal is that by putting consumers in the driver s seat they can become direct participants in their care in collaboration with their physicians and they can help direct how their health care will be delivered In the last few years several factors have accelerated the effort to connect consumers to their health care providers and their own information As in other sectors many health entities such as integrated delivery networks and health insurers recognize the value of and are emphasizing online connections with consumers to improve service lower administrative costs and remain competitive The Health Information Technology for Economic and Clinical Health HITECH Act established that individuals have the right to obtain electronic copies of their information held in electronic health records EHRs The MU requirements under HITECH also have placed priority on patient access and engagement for providers and hospitals to qualify for federal financial incentives Section 13405 e of HITECH established an individual s right to request information in electronic format from EHRs and have it sent to a service of the individual s choosing Although there may be varying interpretations as to whether this provision applies specifically to state or regional health information sharing efforts it clearly establishes the basic expectation that health IT will help foster individual access to personal health information The MU requirements of the EHR Incentives Program include the delivery of electronic copies of personal health information to patients For Stage 2 of this program it has been proposed that patients should be able to view and download their information from participating providers and hospitals Similarly patient engagement is likely to be a focus for emerging requirements for Accountable Care Organizations ACOs within the Medicare Shared Savings Program Individual access is also addressed in a March 2012 Program Information Notice titled Privacy and Security Framework Requirements and Guidance for the State Health Information Exchange Cooperative Agreement Program released by the Office of the National Coordinator for Health Information Technology ONC As a result of all of these factors several health information sharing efforts are seeking ways to help participating providers and hospitals fulfill these MU and health care reform requirements These health information sharing efforts are contemplating how to enable providers achievement of these requirements in a variety of ways For example some will seek to provide secure access directly to individuals to retrieve information such as medication lists or past lab results from doctors and hospitals Alternatively some may supply such information to the providers EHRs which in turn offer online access to individuals through secure online patient portals or electronic PHRs Yet another opportunity to provide individuals with access to their own health information is via secure e mail In all cases the provider would have a primary role in engaging patient participation which could help satisfy some of the requirements of these programs Notably a health information sharing effort does not have to aggregate an individual s information in order to provide a useful service Simply providing basic information such as record location services can be useful to both participating providers as well as patients The information a health information sharing effort is able to make available to patients will reflect its larger structure and organization and should respect the meaningful decisions individuals have made with the providers or entities with whom they have a relationship about whether and how to share their health share their information Regardless of the ways in which consumers may be ultimately given access to their personal health information such access must be implemented with careful policies and practices in place to protect personal health information and earn the trust of the public and providers Back to top III What are the components of the Framework and how can they be incorporated in the procurement process for personal health information services The Markle Common Framework for Networked Personal Health Information is built upon a set of core principles that provide the foundation for managing personal health information within consumer accessible data streams These principles are based on accepted FIPPs Each principle must be contextualized into a set of policy and technology practices that together protect privacy and enhance trust All such policy and technology practice areas must be addressed in a sound and public way to provide adequate protections to consumers and to encourage trust across a network See Appendix A for the principles and Appendix B for the practice areas A useful resource to implement the Markle Common Framework for Networked Personal Health Information is the detailed due diligence Policy and Technology Checklists for Procurers and Implementers These tools were derived by analyzing the recommendations of each practice area then developing a set of detailed questions that can be used as a checklist of recommended policy practices which may be used in requests for information RFI requests for proposals RFP procurement requirements or policy development discussion guides Back to top IV What is a good starting point for individual access The ability for individuals to log in securely online to view and download pertinent health information such as what is required for patient engagement under Meaningful Use is a good starting place for enabling individual access The Markle Connecting for Health public private collaboration has emphasized the download capability as a critical building block for patient engagement and market innovation 3 Implementing the online view and download capability for patients is not the same as developing and implementing a fully functional PHR The basic requirements begin with secure online access meaning that the identity of each individual given credentials to access his or her own data must be proofed to an acceptable level of accuracy and the individual must present an acceptable token e g unique username and password combination upon login to get access to the data for view and or to download Establishing an individual s identity and issuing authentication tokens for network access can be a significant barrier for health information sharing efforts or any entity that does not have a direct relationship with the patient The solutions will depend on the relationship that the entity has with patients or whether it can bootstrap identity proofing performed at participating provider organizations or other organizations that may have a relationship with the consumers The CT2 guide of the Markle Common Framework for Networked Personal Health Information has a detailed set of recommendations regarding identity proofing and monitoring authentication tokens and reliance on third parties for such services The second basic requirement is that logged in individuals be able to view and download key information about themselves in human readable formats The MU patient engagement data sets are a good place to start such as problem and medication lists allergies laboratory results and clinical visit summaries from eligible providers and hospital discharge instructions from eligible hospitals Any entity offering the download capability should obtain independent confirmation from the individual i e such as a yes response to a question that the individual wants to download a copy of personal health information Such independent confirmation should be obtained after presenting the individual with at a minimum the following clearly stated information Health records can contain sensitive information If you download sensitive information to a shared or unsecured computer or device others might see it You are responsible for protecting the information that you download and for deciding with whom to share it Are you sure you want to download a copy of your personal health information to the computer or device you are using With respect to download formats human readability is the minimum requirement Additionally if the data are available in the standardized clinical summary formats endorsed as MU standards i e CCD or CCR the patient should have an option to download that data in those formats The bottom line requirement for human readability ensures that people will not need to use a specific application or service to see their own health information They should have the option of viewing and downloading their information in human readable form through ubiquitous Internet browsers and common software formats e g text spreadsheet or PDF By human readable we mean information viewable and downloadable online should be in English or other language common to a provider s majority population of patients It is ideal for the terminology to be as patient friendly and free of medical jargon as possible as well as translated into languages common to a provider s patient population However we do not recommend strict requirements for how understandable the information must be to patients at this time It is more important to make the information available securely and conveniently online The important distinction of a basic view and download capability is that the entity providing it does not also necessarily have to do the hard work of developing applications that allow consumers to use or manipulate their own health information Once individuals download their information they have the opportunity to choose from a variety of different services or offerings to manage and use the information further The experience at the U S Department of Veterans Affairs VA and with the Medicare and TRICARE programs demonstrate that the basic capability has value to patients and can spur private sector innovation When the VA enabled patients to download their information the private sector responded by demonstrating a wide range of applications that made that information useful to patients making it easier to know when to take medications storing medical images and connecting with peers who have similar health conditions As the download capability becomes a common feature individuals may have a need for proxy services to organize and regularly update their personal health information The Markle Common Framework Policies in Practice The Download Capability provides specific recommendations for health information sharing efforts and other data holders to enable patients to download their information as well as policy considerations for enabling secure automated downloads through a variety of services Back to top Appendix A The Markle Common Framework for Networked Personal Health Information consists of Consumer Policy CP and Consumer Technology CT guides it is a hallmark of the approach that policy and technology work together interdependently Here are the nine principles and their corresponding guides CORE POLICY PRINCIPLES MARKLE COMMON FRAMEWORK FOR NETWORKED PERSONAL HEALTH INFORMATION PRACTICE AREAS 1 Openness and transparency Consumers should be able to know what information has been collected about them the purpose of its use who can access and use it and where it resides They should also be informed about how they may obtain access to information collected about them and how they may control who has access to it CP2 Policy Notice to Consumers 2 Purpose specification 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 CP2 Policy Notice to Consumers CP3 Consumer Consent to Collections Uses and Disclosures of Information CT4 Limitations on Identifying Information 3 Collection limitation and data minimization Personal health information should only be collected for specified purposes and should be obtained by lawful and fair means The collection and storage of personal health data should be limited to that information necessary to carry out the specified purpose Where possible consumers should have the knowledge of or provide consent for collection of their personal health information CP2 Policy Notice to Consumers CP3 Consumer Consent to Collections Uses and Disclosures of Information CT4 Limitations on Identifying Information 4 Use limitation Personal data should not be disclosed made available

    Original URL path: http://www.markle.org/solr-search?keyword=&page=91 (2016-02-10)
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