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  • Study Shows Market Competition and Government Encouragement are Key Drivers of Growth of the Internet in China | Markle | Advancing America's Future
    year study of Internet use and its impact in China reveals that the key drivers behind its growth are market forces including people s increasing desire to go online and competition among service providers and the government s view of the information technology sector as an engine for economic growth The study also examines the demographics and attitudes of Internet users in China finding that a majority of them expect the Internet will bring more freedom of speech and create more opportunities to express their political views Surveying Internet Usage and Impact in Twelve Chinese Cities is based on door to door interviews with 2457 Internet users and 1484 non Internet users and was directed by Professor Guo Liang of Beijing s Chinese Academy of Social Science CASS In addition case studies were conducted in five small cities The project developed and supported by the Markle Foundation is a unique in depth look at Internet usage in China and its impact on Chinese society The report identifies the main drivers behind the growth of the Internet in China as Internet Companies Competition among Internet service provider companies has lead to low costs better services and more access The report notes that unlike other sectors in China a single state owned company does not control the Internet industry Government The Chinese government considers the IT industry an engine of economic growth In addition the Chinese government has created an aggressive e government program to better share information between government agencies Individual User Demand The Internet provides a new and exciting source of entertainment and a way to communicate especially for young people The Internet also makes it easier to find information than through the traditional media and is a place where people can express their own opinions Internet cafés While the number of Internet cafés has greatly decreased in the metropolitan cities due to the government s efforts to avoid social problems the number of Internet cafés in provincial capitals and small cities is growing rapidly China is second only to the U S in the number of Internet users with the number of users growing rapidly The Internet has the potential to contribute significantly to the future of the people of China said Zoë Baird president of the Markle Foundation Professor Guo s findings show that in China the Internet has the ability to expand the flow of information and spur economic growth With the arrival of the Internet the Chinese people have the opportunity to access information communicate and conduct economic transactions in a new way said Professor Guo Liang The findings of our study suggest that while the Internet is still relatively new to China it is already changing Chinese cultural social and political institutions The study also details the attitudes and demographics of Chinese Internet users and examines the emergence of e business as well as the Internet s impact on media communications and politics in China Other key finding include 71 of Internet users and 69

    Original URL path: http://www.markle.org/about-markle/media-release/study-shows-market-competition-and-government-encouragement-are-key (2016-02-10)
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  • WebMD Health and Markle Foundation Launch "Life on the Line" Unique Initiative Empowers Women To Take Control of Their Own Health Care | Markle | Advancing America's Future
    The Life on the Line center brings together some of the best health resources on the Internet and streamlines the often overwhelming process of researching reliable health and health care information Life on the Line consists of WebMD Health s content and peer support groups personally tailored interactive tools designed by FACCT and links to government and non profit health related sites Women can use Life on the Line to assess how empowered they are as patients compare the care they are currently receiving to broader norms generate personalized tips to improve their care and their relationships with their doctors find doctors and hospitals appropriate to their individual needs learn critical aspects of self care to stay as healthy as possible and get and give support through WebMD s peer support systems Life on the Line focuses on women s health issues and provides women with the information and resources needed to improve their health care The center will allow women to foster an enhanced doctor patient relationship in which they collaborate with their doctors to stay healthy diagnose disease and choose among treatment options The Life on the Line concept was developed by the Markle Foundation in collaboration with WebMD Health FACCT Oxygen Media and a team of health and media experts Life on the Line was inspired by compelling stories such as that of Chris McHugh a 34 year old mother of two and her courageous battle against inflammatory breast cancer Diagnosed with cancer and given only 18 months to live Chris resolved to learn everything she could about her disease and her treatment options Chris McHugh passed away earlier this year but six years not 18 months after her diagnosis By becoming her own health advocate Chris bought precious years with her family and friends that doctors predicted she would never have In addition she became an advocate for all women with serious illnesses urging them to be their own health care champions Markle s health program seeks to accelerate the use of information and communication technologies by patients to improve their health and health care said Zoë Baird president of the Markle Foundation We believe that patients with the right tools can significantly influence the quality of their care The Life on the Line center offers women information about health care and a set of online tools that can give them greater ability to improve their own health as well as the health of their families said Dr Carol Diamond managing director of the Markle Foundation s Healthcare program Our collaboration with the Markle Foundation gets right at the heart of our mission to make health information more accessible easy to understand and most importantly actionable said Nan Forte EVP Consumer Services WebMD Health What s exciting about the Life on the Line center is that its focus goes beyond quality content in general and offers content that is specifically suited for different personality types and stages within the healthcare continuum The Oxygen Network is producing

    Original URL path: http://www.markle.org/about-markle/media-release/webmd-health-and-markle-foundation-launch-life-line-unique-initiative (2016-02-10)
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  • Markle Connecting For Health Unites Over 100 Organizations To Bring American Healthcare System into Information Age | Markle | Advancing America's Future
    errors According to their figures more than two million adverse drug events and 190 000 hospitalizations per year could be prevented potentially saving up to 44 billion annually in reduced medication radiology laboratory and hospitalization expenditures Today marks a watershed moment with over a hundred of the largest most influential healthcare organizations in the nation across all sectors public private and non profit coming together to say this situation must and will change said Zoë Baird president of the Markle Foundation We can no longer live in a society where we can conduct financial transactions or make travel reservations electronically in the blink of an eye yet we cannot mobilize these same tools to deliver quality healthcare Healthcare Data Standards Beginning in September of 2002 Connecting for Health s Steering Group whose members represent a driving force in healthcare agreed for the first time on the voluntary adoption of an initial set of data standards and communication protocols for the sharing of healthcare information The U S Government announced its adoption of these same standards in March of 2003 The standards recommended to the Steering Group throughout the project were based on the work of the Data Standards Working Group led by chair W Edward Hammond PhD Professor Emeritus Schools of Medicine and Engineering Duke University and President of the American Medical Informatics Association The data standards and protocols include HL7 v2 x data interchange standard the HL7 Reference Information Model the DICOM standard for imaging the NCPDP SCRIPT prescription drug information standard the LOINC vocabulary for laboratory tests the IEEE CEN ISO 1073 medical device communication standard the ASC X12 administrative transaction standard HL7 Data Types Clinical Document Architecture CDA and the HL7 Clinical Context Management Specification CCOW The adoption of data standards and the other actions of Markle Connecting for Health constitute a critical first step in the creation of a truly modern healthcare infrastructure said Janet Marchibroda executive director of Markle Connecting for Health and CEO of the eHealth Initiative This work has the potential to enable effective and secure communication among healthcare organizations improve the quality and reduce the cost of care and strengthen the efforts of consumers patients and caregivers Privacy and Security Without trust for the privacy and security of health information on the part of the public and the healthcare system at large electronic systems cannot be successfully used Markle Connecting for Health s Privacy and Security Working Group studied noteworthy privacy and security practices in order to describe and disseminate feasible solutions currently in use in a variety of healthcare settings The Privacy and Security Working group report notes that electronic systems can offer greater security and privacy than is possible in a paper based record if these elements are built into the application and fully implemented Introducing information technology into healthcare creates new risks to privacy as well as new means to protect privacy said Thomas H Murray president of the Hastings Center and chairman of the Privacy and Security Working

    Original URL path: http://www.markle.org/about-markle/media-release/markle-connecting-health-unites-over-100-organizations-bring-american (2016-02-10)
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  • New Database Offers Free and Most Complete Access to Legal Precedents Involving Domain Name Disputes | Markle | Advancing America's Future
    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 Database Offers Free and Most Complete Access to Legal Precedents Involving Domain Name Disputes Publication Date April 30 2003 NEW YORK NY The Center for Information Technology and Dispute Resolution and the Markle Foundation today announced a public resource that provides free access to an online compendium of archived decisions regarding domain name dispute cases The Uniform Domain Name Dispute Resolution Policy Database provides Internet users worldwide with free access to precedents regarding disputes over Web addresses giving parties the tools necessary to better prepare for Web based cases than ever before The database will be updated on an ongoing basis making it the most complete resource available The UDRP database encourages consistency of globally distributed decision making enable equal access to information for all parties and improve ongoing policy development in dispute resolution The UDRP database is a unique retrieval system It allows arbitrators lawyers panelists and others to obtain the information that they need in a systematic way using a quick and simple form to search for a domain name and all similarly sounding names Funded by the Markle Foundation the database was developed by Ethan Katsh professor of legal studies at the University of Massachusetts at Amherst and co director of the Center for Information Technology and Dispute Resolution in conjunction with the Cornell Law School Legal Information Institute The comprehensive database of previous cases of domain name disputes will permit better classification and analysis said Professor Katsh It will allow for a richer and more precise picture of domain name disputes and the overall impact of the UDRP Most importantly it will help to create a more just system of dispute resolution The UDRP is a unique exercise in global dispute resolution It established a set of procedures for resolving domain name disputes Those procedures determine whether an individual purchased a domain name in good faith or engaged in cybersquatting the registering of a popular Internet address with the intent of selling it to its rightful owner The UDRP process includes selecting panelists obtaining and exchanging information reaching a decision within a specified time period and depending upon the decision of the panelist changing canceling or preserving the domain name As the number of disputes over Internet domain names grows it is essential that complainants respondents and the public at large have access to a comprehensive archive of past decisions said Markle Foundation president Zoë Baird Professor

    Original URL path: http://www.markle.org/about-markle/media-release/new-database-offers-free-and-most-complete-access-legal-precedents (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    lead in shaping domestic information and intelligence priorities to inform policymakers The report calls for a networked information technology system that effectively shares information among local state regional and federal agencies and the private sector and sets forth a blueprint for how such a system can be established under a set of Presidential guidelines Today s information technology allows us to use the power of widely distributed information to protect Americans against terrorist threats Task Force co chairs Zoë Baird and James Barksdale said America will make a mistake if we create a centralized mainframe information architecture focused on the nation s capital when the intelligence and other information critical to homeland security need to be shared and coordinated across the country and around the world As the 9 11 stories illustrate most information gathering is done by people who are far removed from Washington The people on the frontlines are at the local level the police officer hearing a complaint from a landlord an airport official who hears about a plane a pilot trainee left on a runway an FBI agent puzzled by an odd flight school student in Arizona or an emergency room resident treating a strange ailment The report argues that because of the nature of new terrorist threats it is necessary to create a more horizontal cooperative and fluid process for intelligence collection sharing and analysis The U S has to develop a sophisticated and integrated information network to protect Americans from attacks at home said Philip Zelikow Executive Director of The Task Force which includes experts who served in the Carter Reagan Bush and Clinton administrations as well as those from the private sector and the academy We need a new national strategy that is networked and transforms intelligence institutions uses guidelines to balance privacy with security and uses the best practices from the private sector The Task Force composed of leading experts in national security information technology and legal and privacy issues argues that the Department of Justice and its FBI should be the lead agencies for law enforcement exercising the power to investigate crimes charge people with crimes and prepare cases for trial and appeal The report argues that DHS should be the lead agency shaping domestic information to inform policymakers and set broad priorities for collecting information The Task Force notes that criminal investigation and counterintelligence often overlaps with intelligence work and that overlap will enhance our knowledge But it concludes that the case for a fundamental separation of law enforcement from the responsibility of providing information to policymakers is strong The report argues that those running criminal investigations and who hold the arrest power the greatest power to deprive someone of his or her liberties should not be the same people who will be seeking all kinds of domestic information from local officials and business firms throughout the nation and using that information in databases Nor should the intelligence analysts be the people who will be preparing cases prosecutors must present in court the very problem recently cited by the federal court that oversees FBI foreign intelligence surveillance wiretaps Under the scenario outlined in the report the FBI would continue to have responsibility for managing clandestine collection operations inside the United States like FISA wiretaps or the recruitment of undercover agents under the supervision of the Attorney General The Task Force report entitled Protecting America s Freedom in the Information Age offers specific recommendations on how the government can develop information collection and analysis capabilities while also protecting the civil liberties of our citizens The Task Force examined highly successful regional initiatives from around the county for example in Utah Texas and California where local and state homeland security efforts provide models for a national system According to the report the federal government is planning to spend 40 billion annually to protect the homeland much of which will be used for new information technologies Yet not enough of these dollars have been allocated to share and analyze information Striking a balance between privacy and security is also a major concern of the Task Force In using watch out lists and other public and private databases the Task Force calls on the President to create guidelines that could be used by agencies from federal to local as a guide on how to balance privacy and security The report calls for the authorization of the scope of domestic information collection and analysis to be carefully defined The report found that one idea that would prove helpful to national security is the concept of a gate with a virtual watch out list The report did not recommend merging all of the 12 or more watch out lists that are currently maintained by the federal government but it did recommend the creation of virtual consolidated watch out lists The Department of Homeland Security or an agency with its functions the report said should be able to pass names across the various lists to check for hits without actually building a data warehouse of its own Additionally the report found that research and development in information technology within government has been insufficiently productive It endorsed a proposal by the National Academy of Sciences committee on technology and terrorism to create an Institute or similar institution that would provide government with advice and assistance on a range of issues from private sector experts Such a Homeland Security Research Institute would have the ability to provide a wide variety of R D needs and would be interdisciplinary in scope In conjunction with the release of the report today the Task Force hosted a policy discussion at the National Press Club at 9 30 am that focused on how government leaders should harness and integrate domestic information to enhance national security Participating in the discussion which was moderated by CNN anchor Frank Sesno were the following Task Force members Co chairs Zoë Baird and James Barksdale Philip Zelikow Executive Director of the Task Force Utah Governor Michael O Leavitt William Crowell former Deputy Director of the National Security Agency Esther Dyson of EDventure Holdings and Jerry Berman of the Center for Democracy and Technology The Markle Task Force on National Security in the Information Age is a diverse and bipartisan group of former policy makers from the past six presidential administrations senior information technology executives and privacy advocates from both the public and private sectors The Markle Task Force has recommended ways of improving national security decisions by transforming business processes and how information is shared Its recommendations informed the 9 11 Commission Report and were subsequently included in two federal laws Learn more about the Markle Task Force at www markle org national security Markle Foundation Launches Initiative to Promote Adoption of Key Clinical Health Information Standards WASHINGTON DC The Markle Foundation today launched an ambitious public private initiative designed to improve patient care by promoting the adoption of an initial set of standards for electronic medical information in a way that protects patient privacy Markle Connecting for Health A Public Private Collaborative announced at the Emerging Technologies Healthcare Innovations Congress in Washington D C will bring together government industry healthcare leaders and consumer advocates in an action oriented nine month effort Establishing consensus on a core set of health care data standards has the potential to improve quality facilitate timely research and ultimately enable patients to become full participants in their care The Markle Foundation will convene the Collaborative which will include practicing clinicians hospitals employers and other third party payers federal and state government organizations healthcare information technology organizations academic and research institutions national standards groups accrediting organizations manufacturers community organizations and consumers The Foundation will also provide initial funding of 2 million There is a critical need to move healthcare into the information age said Zoë Baird president of the Markle Foundation The U S healthcare system has not taken full advantage of the information technologies that have revolutionized other industries With Connecting for Health we intend to be a catalyst for improving healthcare by bringing sectors together to implement some key standards while protecting patients privacy and security Because of the fragmented way that health information is currently collected it is often unavailable when needed most The adoption of a core set of electronic information standards is expected to improve clinical decision making reduce medical errors accelerate research on patient outcomes and increase the effectiveness of public health efforts The work of Connecting for Health will be an important first step toward ultimately enabling patients to gain access to secure medical information in order to become more informed partners in their own care While we recognize that others have struggled with these issues we believe that the time is right for a broad based collaborative effort focusing on practical solutions said Carol Diamond MD MPH managing director of the Markle Foundation s Healthcare Program and chair of Connecting for Health Connecting for Health is designed to build on the good work that has already been done and engage key stakeholders in moving forward together Steering Committee of Industry Leaders Connecting for Health s Steering Committee includes a number of recognized progressive leaders in healthcare As chair of the Steering Group Dr Diamond will be joined by three respected executive vice chairs John R Lumpkin MD MPH director Illinois Department of Public Health and Chair National Committee on Vital and Health Statistics Herbert Pardes MD president and CEO NewYork Presbyterian Hospital Russell J Ricci MD general manager IBM Global Healthcare Industry The Collaborative will be organized into three working groups focusing on data standardization privacy and security and personal health Dr Ricci is also board chair of the eHealth Initiative a non profit organization whose mission is to improve the quality safety and cost effectiveness of health care through information technology He said we will build upon the eHealth Initiative s public private collaboration for public health and will work together to achieve what we know is a vital necessity an interoperable health care system With flexible open data standards we can make significant progress in reducing medical errors improving patient care and holding the line on escalating healthcare costs The State of Healthcare Information Technology Despite the sophistication of the U S healthcare system medical information is often collected and reported in a piecemeal fashion For example hospitals and physicians are often unable to obtain usable information that will help in applying research breakthroughs or avoiding preventable medical mistakes Physicians may find themselves providing patient care without always knowing what has been done previously for a patient and by whom The lack of standardization means that current information systems are often unable to provide a complete and continuous picture of a patient s healthcare Because patients interact with many plans and providers over a lifetime the continuity of their personal health information is especially vital to their long term health Clinical data standards are critical to providing the best possible patient care said Herbert Pardes MD President and CEO NewYork Presbyterian Hospital NewYork Presbyterian has long been committed to standards and we are pleased to join this effort with other healthcare leaders to find solutions that can serve as a model going forward The Connecting for Health Collaborative is part of a broader effort to build a National Health Information Infrastructure NHII an idea first broached in an Institute of Medicine report on computer based patient records in 1991 The concept has since been elaborated upon and endorsed by a variety of government and private organizations including a report last year by the President s Information Technology Advisory Committee The broad goal of the NHII is to deliver reliable data in a secure and private format to consumers and medical professionals when and where they need it so they can use this information to make informed decisions about health and health care Connecting for Health is convening groups in order to build on momentum at a time when there is a greater impetus for change than ever before We are acutely aware since 9 11 that the mobility of healthcare information is critical to our national security because it will enable us to monitor the nation s health said John R Lumpkin MD MPH director Illinois Department of Public Health and Chair National Committee on Vital and Health Statistics Standards are a first step toward meeting this critical need The Connecting for Health Collaborative is premised on the belief that with a thoughtful collaborative and focused approach the group can succeed in initiating sustainable results Markle Connecting for Health is a public private collaborative with representatives from more than one hundred organizations across the spectrum of health care and information technology specialists Its purpose is to catalyze the widespread changes necessary to realize the full benefits of health information technology while protecting patient privacy and the security of personal health information Markle Connecting for Health tackles the key challenges to creating a networked health information environment that enables secure and private information sharing when and where it is needed to improve health and health care Learn more about Markle Connecting for Health at www markle org health New Website Provides Resources For Empowering Poor Communities 50 Million Americans Face Online Content Gap WASHINGTON DC Citing original research indicating a persistent digital divide in content for low income communities The Children s Partnership with the Markle Foundation today launched the Community Contentbank www contentbank org a new online resource that provides low income communities with information and tools to serve their unique needs A new report Online Content for Low Income and Underserved Communities An Issue Brief showing that 50 million Americans are currently underserved by available Web based resources was also released today We ve seen first hand that low income residents are eager to take advantage of the educational and employment opportunities on the Internet and that community technology groups offer an ideal way to connect them with the information they need Contentbank org is both a service and a lever to ensure that the Internet benefits low income and underserved users said Laurie Lipper co director of The Children s Partnership Unlike most online resources the new Web site promotes the creation of original content tailored to the needs of poor limited literacy and non English speaking populations who are often ignored by conventional information sources Contentbank org is geared toward the growing number of community based organizations that connect poor neighborhoods to technology Contentbank org encourages the creation of neighborhood specific online connections to health education housing and employment resources All Americans should have the chance to benefit from our networked economy and society said Zoë Baird president of the Markle Foundation We invested in Contentbank org to begin building critical resources for low income communities and to encourage corporations and governments to develop content that serves the needs of those communities Over the past four years the number of Americans with family incomes of less than 25 000 annually who used the Internet more than doubled from 7 8 million to 16 7 million As larger numbers of low income limited literacy and non English speaking populations are using the Internet the need for relevant content is becoming more urgent Internet content is skewed towards those with disposable incomes and higher educational levels Contentbank org aims to tilt the scales toward the millions of low income users who are eager to take advantage of new opportunities online said Wendy Lazarus co director of The Children s Partnership As a national advocacy organization for children and families in low income communities The Children s Partnership spent two years developing and testing Contentbank org a solution to the problems identified in their groundbreaking study released in 2000 Online Content for Low Income and Underserved Americans The study found that online content not just access to computers is the new frontier of the digital divide The Web site arises from a growing grassroots movement to bring Internet access and training to low income rural and underserved communities to help them benefit directly from the digital economy While computer access has grown needed content is still lagging severely behind according to the new report The research provides an update of the state of online content for underserved communities Other Issue Brief Findings Forty four million Americans do not have the reading and writing skills necessary to take advantage of many opportunities Although appropriate content for limited literacy Americans could help raise literacy levels as well as employment skills there continues to be a severe shortage of Internet information for early readers Today more Americans speak a language other than English at home than did two years ago An estimated 45 million compared to 32 million in 2000 Spanish speakers can find more online content than two years ago but the supply is still quite limited and nearly nonexistent for many other languages There has been a notable increase in the number of places in local communities that can serve as distribution and production centers for relevant Internet information and applications Compared to two years ago the number of community technology centers has doubled while the number of public libraries offering Internet access grew from 11 000 to over 15 000 Internet access from a location outside of the home more than doubled between 1998 and 2001 increasing from 17 to 34 8 Places like schools libraries and community technology programs offer users the opportunity to obtain relevant Internet information and applications and residents who want to create content they value can get coaching at these centers to do so Contentbank org Provides Evaluated and concisely organized information from the Web that is ready for use by community technology practitioners Twenty recommended Web sites for health education jobs and housing as well as select limited literacy Spanish and cultural content sites highlighting features especially useful to underserved users A checklist that serves as a quick guide to the most frequent content barriers facing low income

    Original URL path: http://www.markle.org/publications?term_node_tid_depth=All&tid_1=26&date_filter[value][year]=&page=5&tid=All (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    twentieth century Read the rest of the paper in the PDF CGI Annual Meeting 2014 Delivering Low Cost Degrees to 40 million People Moderated by Zoë Baird CEO and President of Markle this Clinton Global Initiative Small Group Discussion featured remarks by Anant Agarwal Chief Executive Officer edX and Tim Bozik President Higher Education at Pearson Description There is an increasing need to expand the talent pool around the world to meet the professional challenges of the 21st century However access to and the affordability of higher education continue to widen the gap between those seeking to become career ready and the employers seeking skilled talent to fill current and future workforce demands Massive open online courses MOOCs have enormous potential to provide access to high quality coursework to tens of millions of students around the world and offer an untraditional pathway to attaining employable skills critical to diminishing the existing skills gap In this session CGI members will learn strategies for harnessing this innovative learning model with the support of third party accreditation to build a highly skilled global workforce Big Data Data Analytics and America s Economic Future This paper was prepared for the Markle Economic Future Initiative Imagine a man who has worked as a welder for twenty years in Northeast Ohio One day after work he is unexpectedly laid off from his job He goes home that day to tell his wife the news They sit their two children down to tell them that they will have to start making big changes in how the family spends money The next morning he begins searching online for welding jobs in Northeast Ohio For weeks he sends his resume to generic human resources email inboxes It takes him days to find any available opportunity that might work and weeks to hear back if he ever does at all Meanwhile the family s savings dwindles and they wonder what options they have left This is a scenario playing out across the country every single day Read the rest of the paper in the PDF Rework America In today s networked economy we need to unleash opportunities for Americans to learn and train in innovative ways and seize the growth potential of world markets and shared data How might we shape new models of learning and work Markle Initiative members share their vision of a new and hopeful future for America REWORK AMERICA Markle Economic Future Initiative NEW YORK NY During the closing plenary of the 2014 Clinton Global Initiative CGI Annual Meeting President Bill Clinton today announced REWORK AMERICA the Markle Economic Future Initiative s CGI Commitment to Action REWORK AMERICA is an extraordinary partnership focused on the changes brought about by today s networked world The Markle Economic Future Initiative will help drive innovations that expand opportunities for employment and broaden ways for all Americans to learn and train for the work of the future Co chaired by Markle CEO and President Zoë Baird and Starbucks chairman president and ceo Howard Schultz the Markle Economic Future Initiative brings together a broad collaboration of entrepreneurs technology leaders CEOs educators community and religious leaders and other partners to empower all Americans to succeed in today s digital economy The members believe it will take strong leadership in these transformational times to advance actions that help all Americans gain access to the resources they need to share in the benefits of the new economy Markle is committing 50 million dollars to REWORK AMERICA The members of REWORK AMERICA share a vision of a hopeful future for our nation one in which the changes brought about by a networked world work for us and where more Americans are optimistic about their chances for learning training and employment In a collective point of view reworkamerica org the members offer their thoughts for pairing ideas with powerful actions to accelerate innovations that return opportunities to all Americans While uncertainty and pessimism about the future remain high there is a strong foundation on which to rebuild In fact 70 percent of middle class Americans in a recent Markle commissioned national survey said they want the chance to advance their education and training to learn new skills in math science and technology Eighty six percent agreed that learning throughout one s lifetime is critical to keeping up in today s world And nearly 9 out of 10 middle class Americans expressed support for access to resources that can help American small businesses expand into new markets There is no challenge more important for the strength of our nation than the challenge of advancing economic opportunity for all Americans said Markle CEO and President and Markle Economic Future Initiative co chair Zoë Baird Americans are known for their creativity and entrepreneurship By mastering innovations in learning and business growth we can reach for a better future in which all Americans prosper in the networked world Technology is making it easier than ever to tap into learning that is more flexible affordable and personalized It also is creating new ways for Americans to work or to start and grow a business aided by tech platforms that can bring the world s growing middle class as potential customers to our tablets We need to enable Americans to connect with buyers around the world and to bring the operational power and insight of large businesses into the hands of small entrepreneurs and main street businesses And 21st century learning options are needed to develop credentials that correlate with work that will carry Americans into the future and enable people to keep learning throughout their lives I have long believed the best investment a leader can make is in their own people and their futures said Howard Schultz chairman president and ceo of Starbucks and co chair of the Markle Economic Future Initiative Today too many of our youth believe the American Dream is impossible to achieve It s more important now than ever for business community and government leaders to

    Original URL path: http://www.markle.org/publications?term_node_tid_depth=883&tid_1=All&date_filter[value]=&page=4 (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    of networks by developing and adopting a Common Framework for networked PHRs A networked PHR environment cannot be achieved without collaborative efforts and consensus agreements among all stakeholders To achieve our national vision of networked PHRs for every American who wants one we need to agree on the characteristics of the network and the means by which personal health information will be shared and managed We must create an environment of trust and confidence Without a Common Framework of policies for information stewardship even a thousand interesting projects and product offerings are not likely to produce a trustworthy interoperable PHR This paper provides a vision of a plurality of organizations that offer opportunities for consumers to connect to networks of personal health information and services An individual could connect via a Consumer Access Service offered by a provider group a RHIO a retail chain a payer an affinity group a web portal a bank etc We seek a free and fair competitive environment in which all players agree to a minimum set of common rules The precise path toward this vision is not completely knowable now However we envision several steps over the next five years Collaboration among multiple stakeholders to recommend policies beginning with the key areas cited above Development of one or more prototype Consumer Access Services with multiple PHR connections Broad dissemination of the prototype findings and requirements Contractual agreements to abide by a Common Framework among a critical mass of health care actors Evaluation of potential methods to validate and enforce rules for Consumer Access Services and the applications that connect to them As we have witnessed in the short history of the Internet market demand and the power of networks can combine to make consumers a driving force for change This paper outlines a framework aimed at allowing a similar phenomenon to happen in the particularly complex and sensitive area of personal health information pagebreak Appendix A Definitions of PHRs Personal health record PHR is a widely used but loosely defined term for a variety of emerging technologies that enable people to manage their health information and health care transactions electronically The following brief discussion outlines key characteristics of PHRs PHRs Are Distinct from EHRs It is important to distinguish PHRs from electronic health records EHRs EHRs are electronic systems used by health care providers to record and manage information about their patients EHRs are designed to replace the paper patient chart that clinicians have a legal and professional obligation to maintain throughout the course of each patient s care and for many years afterward In contrast PHRs are optional tools for consumers who do not have similar legal and professional obligations for health record keeping Attributes of a PHR The Markle Connecting for Health Personal Health Working Group described the PHR as an electronic tool that enables individuals or their authorized representatives to control personal health information supports them in managing their health and well being and enhances their interactions with health care professionals 1 Markle Connecting for Health has put forward the following as seven attributes of an ideal PHR Each person controls his or her own PHR PHRs contain information from one s entire lifetime PHRs contain information from all health care providers PHRs are accessible from any place at any time PHRs are private and secure PHRs are transparent Individuals can see who entered each piece of data where it was transferred from and who has viewed it PHRs permit easy exchange of information across health care systems 2 The American Health Information Management Association has a similar definition The personal health record PHR is an electronic universally available lifelong resource of health information needed by individuals to make health decisions Individuals own and manage the information in the PHR which comes from health care providers and the individual The PHR is maintained in a secure and private environment with the individual determining rights of access The PHR is separate from and does not replace the legal record of any provider 3 As noted in the Values and Principles section of this paper few if any current PHRs provide an easy means to reach the full ideals of all seven Markle Connecting for Health attributes Attributes three and seven are particularly difficult to achieve in today s health information technology environment Dimensions of PHRs There is a heterogeneous group of applications that describe themselves as PHRs Below we describe a set of six dimensions to classify the many PHRs on the market today As a visual aid we illustrate these dimensions as sides of a cube Each side of the cube has a taxonomy to help understand the diversity of offerings Many PHRs are intended to serve the general public Others are offered to selected populations such as employees of a certain company or members of a health plan The size of these population segments ranges from small e g parents of children with hydrocephalus to very large e g people who have diabetes Perhaps the most recognizable characteristic of a PHR system is its relationship to other health information systems A PHR may be integrated or sometimes said to be tethered to an EHR This type of PHR is often called a patient portal because the PHR provides the patient s view into an extract of the provider s EHR Other PHRs are integrated with non EHR systems For instance a PHR may have a relationship with an insurance company s claims system a pharmacy s information system or a health monitoring device The other type of PHR is called independent or stand alone i e not integrated with another information system and typically reliant on patient input data The third dimension relates to the source of data that PHRs capture and store This is closely related to the type of integration with other health information systems that the PHR offers There are three main types of PHR data consumer sourced professionally sourced and device sourced data Consumer sourced data are captured typically via manual entry from the individual or individual s authorized proxy Professionally sourced data are from clinicians and other health care entities e g payers pharmacies labs etc Device sourced data are generated via uploads of information from monitoring tools such as blood glucometers or blood pressure cuffs Of course PHRs can implement any combination of these data sources PHRs may also be categorized based on the type of platform on which the application runs Most PHRs are web based However some PHRs may run on the user s PC or a portable device These portable devices include USB keys mobile phones smart cards and even implantable devices PHRs may evolve to interoperate across several platforms PHRs may also be differentiated by the entity that sponsors the product and there are a wide variety of such entities Employers large and small health care providers insurance plans pharmacy services affinity groups dot coms device makers and disease management companies are among those sponsoring PHR applications Note A PHR sponsor often does not directly supply a PHR product to its target population but rather contracts with a PHR vendor for the service Closely related to sponsorship is the final dimension the business model or value proposition PHRs applications differ according to the value proposition that they promise their vendors and sponsors PHR vendors generally rely on revenue from some combination of licensing fees services or transaction fees advertisements and subscription fees PHR sponsors are generally seeking to derive value from one or more of the following Loyalty and marketing For example a health plan or integrated delivery network may offer the PHR as a means to differentiate its service from competitors and build loyalty and or dependence among its membership Process efficiency For example an integrated delivery network may offer a PHR with online appointment scheduling or online prescription refills to reduce the number of telephone calls from patients to its physicians Messaging For example an employer may offer a PHR to communicate health and health benefits information to its employees including the availability of disease management programs for people with certain conditions Behavior and outcomes For example some PHRs may offer functionality to improve adherence to prescription regimens or exercise programs with the goals of improving behavior and outcomes An important note about all of these diagrams is that the categories within each dimension are not mutually exclusive Many existing models are blended For example a PHR can have all three types of data sources or have several different business objectives More Than Merely a Repository In its 2004 report Connecting Americans to Their Health Care Markle Connecting for Health emphasized the importance of integrating services into PHRs beyond the mere storage of health data Similarly the National Committee on Vital and Health Statistics concluded The term record in personal health record may itself be limiting as it suggests a singular status repository of personal data The Committee found that a critical success factor for PHRs is the provision of software tools that help consumers and patients participate in the management of their own health conditions A personal health record system provides these additional software tools 4 A Symposium of the American Medical Informatics Association s College of Medical Informatics reported Personal health record systems are more than just static repositories for patient data they combine data knowledge and software tools which help patients to become more active participants in their own care 5 At this early stage of development we believe that it is important not to restrict innovation by defining PHRs too narrowly Different populations of consumers are likely to embrace various types of personal health applications Thus health information exchange networks should be designed to support a broad diversity of personal health applications and technologies The Personal Health Working Group Final Report Markle Connecting for Health Markle Foundation July 2003 p 16 Access on May 19 2006 from URL http www policyarchive org collections markle index section 5 id 15473 Connecting Americans To Their Health Care Markle Connecting for Health Markle Foundation July 2004 p 24 Accessed on May 17 2006 from URL http www markle org publications 892 connecting americans their health care executive summary The Role of the Personal Health Record in the EHR Journal of AHIMA 76 no 7 July August 2005 64A D Accessed on May 22 2006 from URL http library ahima org xpedio groups public documents ahima bok1 048517 hcsp dDocName bok1 048517 Personal Health Records and Personal Health Record Systems A Report Recommendation from the National Committee on Vital and Health Statistics Sept 9 2005 Accessed on May 22 2006 from URL http www ncvhs hhs gov 050909lt htm Tang P et al Personal health records definitions benefits and strategies for overcoming barriers to adoption JAMIA Mar Apr 2006 13 2 121 126 pagebreak Appendix B How Applications Interact with Networks As previously disucussed there should be a clear distinction between the role of the network and that of the end user application Application vendors and their clients are in a much better position to determine what sorts of data integration manipulation interactivity and display are required for different users The optimal network specifies only the minimum necessary network configuration to permit flexible data access and effective protections of privacy and security This minimalist approach will allow a great variety of personal health technology applications to connect to the network including those applications that exist today and others yet to be developed The diagrams below illustrate the respective roles of the network and applications Data Standards Security and Privacy Policy The network defines the minimum security and privacy requirements necessary to participate in the network The sub network organizations SNOs enforce these requirements among the SNO members Actual implementation of these policies occurs at the application level Technology Similarly the network establishes which technical data standards are acceptable Ensuring compliance with these standards is the responsibility of the SNO The main burden however falls on the applications which must be capable of sending and receiving data in a specified format Data Routing The NHIN connects the SNOs but does not touch the data shared among them It merely allows them to connect and transport the data SNOs route the data Again the main burden is on applications to supply receive interpret and apply the data for end users Authentication The NHIN is not involved in the authentication of individuals or the location of their records In each SNO a record locater service stores identifying information on ind ividuals and pointers to each person s records Applications authenticate users and maintain their authorization levels End User Function All end user functions should be addressed at the application level The network and SNO layers need not provide end user functions pagebreak Notes The Washington Post homepage on the Internet Washington The Washington Post Company c2006 cited 2006 May 8 Top Web Domains about 4 screens Formerly available at http www washingtonpost com wpdyn content custom 2006 03 31 CU2006033101136 html Boutin P A Grand Unified Theory of YouTube and MySpace Slate serial on the Internet 2006 April 28 cited 2006 May 2 about 5 screens Available from http www slate com id 2140635 Clarke G Wikipedia Eclipses CIA The Register serial on the Internet 2005 September 7 cited 2006 May 4 about 3 screens Available from http www theregister co uk 2005 09 07 wikipedia growth Markle Connecting for Health Connecting Americans to their Health Care monograph on the Internet New York Markle Foundation 2004 July cited 2006 May 17 Available from http www markle org publications 892 connecting americans their health care executive summary Markle Foundation Markle Foundation Survey Fact Sheet monograph on the Internet New York Markle Foundation 2005 cited 2006 May 17 Available from http www markle org publications 951 attitudes americans regarding personal health records and nationwide electronic hea National Committee on Vital and Health Statistics homepage on the Internet Washington Department of Health and Human Services updated 2005 September 9 cited 2006 May 8 September 9 2005 Report to Secretary Leavitt on Personal Health Record PHR Systems about 16 screens Available from http www ncvhs hhs gov 050909lt htm Tang P et al Personal Health Records Definitions Benefits and Strategies for Overcoming Barriers to Adoption J Am Med Inform Assoc 2006 Mar Apr 13 2 121 126 Boutin P A Grand Unified Theory of YouTube and MySpace Slate serial on the Internet 2006 April 28 cited 2006 May 2 about 5 screens Available from http www slate com id 2140635 Anderson G Partnership for Solutions slide presentation 2004 cited 2006 May 2 Available from http www partnershipforsolutions org DMS files anderson cdc ppt Markle Connecting for Health The Architecture for Privacy in a Networked Health Information Environment monograph on the Internet New York Markle Foundation 2006 cited 2006 May 17 Available from http www markle org health markle common framework connecting professionals Markle Foundation Markle Foundation Survey Fact Sheet monograph on the Internet New York Markle Foundation 2005 cited 2006 May 17 Available from http www markle org publications 951 attitudes americans regarding personal health records and nationwide electronic hea Markle Foundation Electronic Health Information Exchanges Consumer and Patient Principles for System Design monograph on the Internet New York Markle Foundation 2005 cited 2006 May 17 Available from http www markle org publications 878 electronic health data exchanges patient and consumer principles system design Personal Health Technology Council Letter to Secretary Leavitt March 6 2006 monograph on the Internet New York Markle Foundation 2006 cited 2006 May 17 Available from http www markle org publications 868 letter personal health technology council ahic Consumer Empowerment Working Group Report to American Health Information Community March 7 2006 monograph on the Internet Washington American Health Information Community 2006 cited 2006 May 17 Available from http www hhs gov healthit documents AHICMarchNotebook pdf Markle Connecting for Health Steering Group and Personal Health Technology Council Opportunities for CMS Action in Support of Personal Health Records monograph on the Internet New York Markle Foundation 2005 cited 2006 May 17 Available from http www markle org publications 1256 opportunities cms actions support personal health records Shi L Singh D Essentials of the US Health Care System Sudbury MA Jones and Bartlett Publishers Inc 2004 Blendon RJ et al Common Concerns amid Diverse Systems Health Care Experiences in Five Countries Health Aff 2003 May Jun 22 3 106 21 Institute of Medicine To Err is Human Building a Safer Health System Washington National Academies Press 2000 McGlynn EA Asch SM Adams J Keesey J Hicks J DeCristofaro A Kerr EA The Quality of Health Care Delivered to Adults in the United States N Engl J Med 2003 June 26 348 26 2635 2645 Miller MR Zhan C Pediatric Patient Safety in Hospitals A National Picture in 2000 Pediatrics 2004 Sep 114 3 907 Markle Connecting for Health Achieving Electronic Connectivity in Healthcare monograph on the Internet New York Markle Foundation 2004 cited 2006 August 1 Available from http www markle org publications 842 achieving electronic connectivity health care summary financial incentives recommen Markle Connecting for Health Steering Group and Personal Health Technology Council Opportunities for CMS Action in Support of Personal Health Records monograph on the Internet New York Markle Foundation 2005 cited 2006 May 17 Available from http www markle org publications 1256 opportunities cms actions support personal health records OECD homepage on the Internet Paris OECD updated 2004 March 6 cited 2006 June 14 Health Spending in Most OECD Countries Rises with the U S far Outstripping all Others about 4 screens Available from http www oecd org document 12 0 2340 en 2649 201185 31938380 1 1 1 1 00 html Institute of Medicine Crossing the Quality Chasm A New Health System for the 21st Century Washington National Academies Press 2001 Institute of Medicine Crossing the Quality Chasm A New Health System for the 21st Century Washington National Academies Press 2001 Robinson J Health Savings Accounts The Ownership Society in Health Care N Engl J Med 2005 Sep 353 12 1199 1202 Maze J Consumerism Creeping into Health Plans The Post and Courier Charleston SC 2005 December 5 final ed E6 Tang P et al Personal Health Records Definitions Benefits and Strategies for Overcoming Barriers to Adoption J Am Med Inform Assoc 2006 Mar Apr 13 2 121 126 Denton IC Will Patients use Electronic Personal Health Records Responses from a real life experience J of Healthc Inf Manag 2001 Fall 15 3 251 259 Tang P et al Personal Health Records Definitions Benefits and Strategies for Overcoming Barriers to Adoption J Am Med Inform Assoc 2006 Mar Apr 13 2 121 126 American Health Information Management Association homepage on the Internet Chicago American Health Information Management Association updated 2005 July 25 cited 2006 May 8 AHIMA press release Personal Health Records belong to the Patient about 1 screen Formerly available from http www ahima org press press releases 05 0725 asp Masys D Baker D Butros A Cowles KE Giving Patients Access to their Medical Records via the Internet The PCASSO Experience J Am Med Inform Assoc 2002 Mar Apr 9 2 181 91 Jimison HB Sher PP Advances in Health Information Technology for Patients J AHIMA 1998 Sep 69 8 42 6 Tang PC Newcomb C Informing Patients A Guide for Providing Patient Health Information J Am Med Inform Assoc 1998 Nov Dec 5 6 563 70 Winkelman WJ Leonard KJ Overcoming Structural Constraints to Patient Utilization of Electronic Medical Records A Critical Review and Proposal for an Evaluation Framework J Am Med Inform Assoc 2004 Mar Apr 11 2 151 61 Bluml BM McKenney JM Cziraky MJ Pharmaceutical Care Services and Results in Project ImPACT Hyperlipidemia J Am Pharm Assoc Wash 2000 Mar Apr 40 2 157 65 Broder C Projects Tap Technology for Disease Management iHealthBeat serial on the Internet 2003 June 10 about 3 screens Formerly available from http www ihealthbeat org index cfm Action dspItem itemID 99541 Neville R Greene A McLeod J Tracy A Surie J Mobile Phone Text Messaging can help Young People Manage Asthma BMJ 2002 Sep 14 325 7364 600 Billault B DeGoulet P Devries C Plouin P Chattellier G Menard J Use of a Standardized Personal Medical Record by Patients with Hypertension A Randomized Controlled Prospective Trial MD Comput 1995 Jan Feb 12 1 31 5 Tang PC Newcomb C Informing Patients A Guide for Providing Patient Health Information J Am Med Inform Assoc 1998 Nov Dec 5 6 563 70 Fierman A Rosen C Legano L Lim S Mendelsohn A Dreyer B Immunization Status as Determined by Patients Hand Held Cards vs Medical Records Arch Pediatr Adolesc Med 1996 Aug 150 8 863 6 MacDonald K Online Patient Provider Communication Tools An Overview monograph on the Internet San Francisco California Health Care Foundation 2003 November cited 2006 June 15 Available from http www chcf org publications 2003 11 online patientprovider communication tools an overview Dishman E Sherry J Changing Practices Computing Technology in the Shifting Landscape of American Healthcare Santa Clara Intel Corporation 1999 Von Knoop C Lovich D Silverstein MB Tutty M Vital Signs E Health in the United States monograph on the Internet Boston Boston Consulting Group 2003 cited 2006 June 15 Available from https www bcg com documents file14063 pdf Kaushal R Shojania KG Bates DW Effects of Computerized Physician Order Entry and Clinical Decision Support Systems on Medication Safety A Systematic Review Arch Intern Med 2003 Jun 23 163 12 1409 16 Potts AL Barr FE Gregory DF Wright L Patel NR Computerized Physician Order Entry and Medication Errors in a Pediatric Clinical Care Unit Pediatrics 2004 Jan 113 1 Pt 1 59 63 Bennett JW Glasziou PP Computerized Reminders and Feedback in Medication Management A Systematic Review of Randomized Controlled Trials Med J Aust 2003 Mar 3 178 5 217 22 Miller RH Sim I Newman J Electronic Medical Records Lessons from Small Physician Practices monograph on the Internet San Francisco California Health Care Foundation 2003 October cited 2006 June 15 Available from http www chcf org publications 2003 10 electronic medical records lessons from small physician practices Bluml BM McKenney JM Cziraky MJ Pharmaceutical Care Services and Results in Project ImPACT Hyperlipidemia J Am Pharm Assoc Wash 2000 Mar Apr 40 2 157 65 Tang PC Newcomb C Informing Patients A Guide for Providing Patient Health Information J Am Med Inform Assoc 1998 Nov Dec 5 6 563 70 Bennett JW Glasziou PP Computerized Reminders and Feedback in Medication Management A Systematic Review of Randomized Controlled Trials Med J Aust 2003 Mar 3 178 5 217 22 Neville R Greene A McLeod J Tracy A Surie J Mobile Phone Text Messaging can help Young People Manage Asthma BMJ 2002 Sep 14 325 7364 600 Winkelman WJ Leonard KJ Overcoming Structural Constraints to Patient Utilization of Electronic Medical Records A Critical Review and Proposal for an Evaluation Framework J Am Med Inform Assoc 2004 Mar Apr 11 2 151 61 Huff C Medical Paperwork Pains Patients Seeking Records Sometimes Frustrated Arlington Star Telegram Forth Worth TX 1999 January 11 1B 5B Miller RH Sim I Newman J Electronic Medical Records Lessons from Small Physician Practices monograph on the Internet San Francisco California Health Care Foundation 2003 October cited 2006 June 15 Available from http www chcf org publications 2003 10 electronic medical records lessons from small physician practices Bluml BM McKenney JM Cziraky MJ Pharmaceutical Care Services and Results in Project ImPACT Hyperlipidemia J Am Pharm Assoc Wash 2000 Mar Apr 40 2 157 65 MacDonald K Online Patient Provider Communication Tools An Overview monograph on the Internet San Francisco California Health Care Foundation 2003 November cited 2006 June 15 Available from http www chcf org publications 2003 11 online patientprovider communication tools an overview RelayHealth The RelayHealth WebVisit Study Executive Summary monograph on the Internet Emeryville CA Relay Health 2002 cited 2006 June 15 Formerly available from https www relayhealth com rh general aboutUs studyResults aspx Von Knoop C Lovich D Silverstein MB Tutty M Vital Signs E Health in the United States monograph on the Internet Boston Boston Consulting Group 2003 cited 2006 June 15 Available from https www bcg com documents file14063 pdf Masys D Baker D Butros A Cowles KE Giving Patients Access to their Medical Records via the Internet the PCASSO experience J Am Med Inform Assoc 2002 Mar Apr 9 2 181 91 Schoenberg R Safran C Internet Based Repository of Medical Records that Retains Patient Confidentiality BMJ 2000 Nov 11 321 7270 1199 203 Gawthorn E Introducing the Personal Health Record RACGP Health Record System Brochure South Melborne Australia Royal Australian College of General Practitioners 1982 Miller RH Sim I Newman J Electronic Medical Records Lessons from Small Physician Practices monograph on the Internet San Francisco California Health Care Foundation 2003 October cited 2006 June 15 Available from http www chcf org publications 2003 10 electronic medical records lessons from small physician practices Von Knoop C Lovich D Silverstein MB Tutty M Vital Signs E Health in the United States monograph on the Internet Boston Boston Consulting Group 2003 cited 2006 June 15 Available from https www bcg com documents file14063 pdf Bluml BM McKenney JM Cziraky MJ Pharmaceutical Care Services and Results in Project ImPACT Hyperlipidemia J Am Pharm Assoc Wash 2000 Mar Apr 40 2 157 65 Broder C Projects Tap Technology for Disease Management iHealthBeat serial on the Internet 2003 June 10 about 3 screens Formerly available from http www ihealthbeat org index cfm Action dspItem itemID 99541 MacDonald K Online Patient Provider Communication Tools An Overview monograph on the Internet San Francisco California Health Care Foundation 2003 November cited 2006 June 15 Available from http www chcf org publications 2003 11 online patientprovider communication tools an overview RelayHealth The RelayHealth WebVisit Study Executive Summary monograph on the Internet Emeryville CA Relay Health 2002 cited 2006 June 15 Formerly available from https www relayhealth com rh National Committee on Vital and Health Statistics homepage on the Internet Washington Department of Health and Human Services updated 2005 September 9 cited 2006 May 8 September 9 2005 Letter to Secretary Leavitt on Personal Health Record PHR Systems about 16 screens Available from http www hhs gov healthit ahic consumer United States Department of Health and Human Services homepage on the Internet Washington United States Department of Health and Human Services updated 2006 May 3 cited 2006 May 8 American Health Care Community Consumer Empowerment Workgroup about 2 screens Available from http www hhs gov healthit ahic ce main html American Medical Association homepage on the Internet Chicago American Medical Association c1995 2005 cited 2006 May 8 Policy H 185 979 allocation of health services about 1 screen Formerly available from http www ama assn org apps pf new pf online f n browse p p T s t st p nth 1 prev pol policyfiles HnE H 185 979 HTM nxt pol policyfiles HnE H 185 982 HTM American Health Information Management Association homepage on the Internet Chicago American Health Information Management Association updated 2005 July 25 cited 2006 May 8 AHIMA press release Personal Health Records belong to the Patient about 1 screen Formerly available from http www ahima org press press releases 05 0725 asp Cerner Corporation homepage on the Internet Kansas City Cerner Corporation c2006 updated 2004 October 12 cited 2006 June 20 Cerner press release Cerner Launches 25 Million 10 Year Initiative to Provide Personal Health Records to Kids with Diabetes about 3 screens Formerly available from http www cerner com public NewsReleases asp id 257 cid 228 America s Health Insurance Plans homepage on the Internet Washington America s Health Insurance Plans updated 2006 January 31 cited 2006 May 8 AHIP Statement on the State of the Union Address about 3 screens Formerly available from http www ahip org content pressrelease aspx docid 14738 California Healthline homepage on the Internet Washington Advisory Board Company updated 2005 May 10 cited 2006 May 8 Former House Speaker Newt Gingrich Calls for Increased Investment in Health Care Information Technology about 2 screens Available from http www californiahealthline org Articles 2005 5 10 Former House Speaker Newt Gingrich Calls for Increased Investment in Health Care Information Technology aspx Available online at http www markle org health markle common framework connecting professionals p1 National Committee on Vital and Health Statistics homepage on the Internet Washington Department of Health and Human Services updated 2005 September 9 cited 2006 May 8 September 9 2005 Letter to Secretary Leavitt on Personal Health Record PHR Systems about 16 screens Available from http www ncvhs hhs gov 050909lt htm Markle Connecting for Health thanks Josh Lemieux Daren Nicholson MD Clay Shirky and David Lansky PhD for drafting this paper 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 A Common Framework The Millie Brief As we study the enormous cultural shifts taking place in the current health care environment fueled in particular by consumer demands to assert greater power over their own health information we must ask ourselves How can American health care institutions global Internet brands and the 21st century patient work together to create a sort of harmonic convergence that benefits and protects them all Many of the personal health data connections and services discussed in this presentation already exist and are being introduced at larger scales with technology leaders such as Microsoft and Google providing new personal health information management tools at an ever growing pace However consumer demands for greater access to their health information and the availability of new technologies must be tempered with a well balanced set of policies to protect the rights of all of the players in this scenario the technology developers the health care providers and of course the consumer This presentation illustrates how such a set of policies and practices can be developed and implemented to enhance trust among consumers as illustrated by the character Millie and the organizations that capture share or receive information about them Connectivity in the 21st Century This Flash animation offers an illustrated vision of how clinicians consumers and policy makers could make better decisions if they were securely networked to share information Watch Now P1 Executive Summary Introduction and Overview A networked health information sharing environment has the potential to enable decision support anywhere at any time improving public and individual health and reducing cost Consumers and patients can benefit directly when their personal information is available to health care providers and indirectly when their information is available in the aggregate to researchers seeking new ways to prevent manage or cure health problems At the same time the potential benefits must be weighed against the risks of privacy and security violations which may increase if not addressed at the outset The accompanying document begins from the premise that any new health network needs to take into account the potential for such violations and to build privacy and information security into its architecture from the outset not as an afterthought The document provides background on the issues at stake explains the current status of health privacy considers new challenges and opportunities in an electronic environment and offers some solutions for a comprehensive response to those challenges I What is at Stake The paper begins by examining why privacy matters both in an online and offline environment It first considers privacy as a matter of individual liberty autonomy and even a fundamental human right All these perspectives remain applicable in a health context but in addition breaches of confidentiality are harmful because they can lead to so called privacy protective behavior in which patients avoid seeking health care in order to protect their personal information Such behavior has a toll on both individual health and more generally on public health It suggests just one important reason why we need to build confidentiality and security into a networked environment II Health Privacy Definitions and Underlying Concepts This section considers the concept of privacy both as it applies to a general environment and more specifically to the medical context It begins by considering the historical evolution of the term In 1890 Samuel Warren and Louis Brandeis famously argued that privacy should be defined as the right to be let alone Today definitions tend more closely to resemble Alan Westin s notion of informational privacy which suggests that the concept should be understood as an individual s right to control personal information Such a definition is particularly important in a global information age and this section identifies two considerations that are repeatedly voiced regarding the handling of medical data The first concerns the almost unlimited uses for medical information Data gathered in a medical context and used for other purposes it is argued poses serious privacy risks The second concern emphasizes the benefits that can be accrued through medical data This section points to these tremendous benefits and argues that while confidentiality of information is essential patients may miss out on some of the benefits if data controls in the name of confidentiality over restrict the uses and dissemination of information The solution is to find a balance between the potential harms and the potential benefits represented by medical data That balance can be achieved through a careful deployment of appropriate technologies combined with strong laws and other forms of confidentiality protection III Health Privacy in a Digital Health Information Networked Environment What is Different This section argues that existing notions of medical privacy are somewhat outdated in a networked health information exchange environment It discusses six risks increased by such an environment arguing that these risks require new and innovative solutions While some of these risks exist in an offline world they have become more pronounced in large part due to the scale of data transactions and the relatively greater ease of collecting linking and disseminating information over a network and to a reduced ability to leave the past behind and to shield sensitive information Among the increased risks include 1 Commercial misuses of data including the use of medical data to deny or restrict insurance coverage restrict credit or other financial benefits or in unsolicited marketing 2 Government misuses of data including secondary use of personal health information by government agencies for employment and other purposes and the need to balance national security with health privacy considerations 3 Criminal misuses of data including fraudulent acts that result in financial or other harm 4 Security breaches including hacking and other criminal activities that lead to data leakage 5 Data quality issues including data corruption and loss and 6 Harmful social consequences including stigma exposure and embarrassment IV Defining a Comprehensive Privacy Architecture Establishing Trust in the Network This section defines some principles for responding to the above risks and protecting medical privacy in a networked environment It begins by discussing existing privacy protection principles adopted in the United States the Organisation for Economic Co operation and Development OECD and Canada It then argues for the following nine principles Openness and Transparency Purpose Specification and Minimization Collection Limitation Use Limitation Individual Participation and Control Data Integrity and Quality Security Safeguards and Controls Accountability and Oversight Remedies Together these nine principles amount to a comprehensive privacy protective architecture that can and should be applied in a networked environment V Current Laws and Guidelines and How They Integrate an Architectural Approach This section includes a brief overview of existing privacy protection laws in the United States It begins by discussing federal protections and in

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  • Meeting the Threat of Terrorism: Authorized Use [Quick Reference] | Markle | Advancing America's Future
    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 Meeting the Threat of Terrorism Authorized Use Quick Reference An Authorized Use Standard for Information Sharing Strengthens National Security and Respects Civil Liberties Publication Date Tuesday September 1 2009 This brief defines the concept of a mission based authorized use standard and lists the potential results of employing it in the government s information sharing system The Markle Task Force identifies mission based authorized use as a viable replacement for the outdated pre 9 11 sharing standards and urges the Obama Administration and Congress to consider this concept in National Security policy making

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