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  • Glossary | Markle | Advancing America's Future
    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 Glossary Below are definitions of key terms in the Common Framework for Networked Personal Health Information Business Data Streams consist of transactions of personal health information among business partners conducted without a consumer view or participation For example consumers generally don t see the transactions between their doctor s office and the insurance company or between the insurance company and its data warehouse etc See CT1 Technology Overview for a discussion of Business Data Streams and Consumer Data Streams Consumers include patients their families and caregivers Our vision is that individual consumers will be able to compile and share electronic copies of their personal health information captured at various points including the home e g monitoring devices patient diaries Consumer Data Streams involve transactions of information into or out of a consumer accessible application such as a PHR Consumer Access Services an emerging set of services designed to help individuals make secure connections with Health Data Sources in an electronic environment Consumers may be offered such services by a variety of organizations ranging from existing health care entities e g providers payers self insured employers to new entrants to the health sector e g technology companies employer coalitions affinity groups health record banks etc Such services are likely to provide functions such as authentication as well as data hosting and management Consumer Access Services may or may not offer PHR applications some may serve as data storage platforms that support a variety of applications including multiple PHRs See Consumers as Network Participants and CT7 An Architecture for Consumer Participation for the rationale for PHRs and Consumer Access Services Heath Data Sources encompasses any institutional custodian of the individual s personal health information This may include health care providers and clinics hospitals and health care systems health insurance plans clearinghouses pharmacies and pharmacy benefit managers laboratory networks disease management companies and others that hold data related to the personal health of individuals Electronic Health Records EHRs are different from PHRs in that they are used by clinicians rather than consumers and patients EHRs are designed to replace and improve upon the paper patient chart We do not envision PHRs as a substitute for the professional and legal obligation for recordkeeping by health care professionals and entities Personal Health Records PHRs 1 encompass a wide variety of applications that enable individuals to collect view manage or share their health information and conduct health related transactions electronically Although there are many variants PHRs are intended to facilitate an individual s ability to bring together or designate others to help them bring

    Original URL path: http://www.markle.org/health/markle-common-framework/connecting-consumers/glossary (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    happens if a visitor has a query about their personal data What if they are not satisfied with how the organization deals with their query X What internal and external audit practices does the organization follow X Can the consumer access audit data Enforcement What mechanisms are in place to ensure that the privacy policy is enforced What mechanisms are in place to provide remedies when there are security breaches or other violations of privacy Sources TRUSTe Your Online Privacy Policy Whitepaper 2004 Page 14 Available at http www truste org pdf WriteAGreatPrivacyPolicy pdf OECD Available at http www oecd org document 1 0 2340 en 2649 34255 28863233 1 1 1 1 00 html URAC Health Web Site Accreditation Standards 2 0 Available at http accreditnet urac org public ProgramGuideLight aspx l 1 pg 131 Username ProgramGuide Password URACPG16 Nymity Nymity s Short Notice Guide Available at https www privacyassociation org assets presentations 06Academy handouts McQuay Terry NymitysShortNoticeGuide pdf Hunton Williams Ten Steps to Develop a Multilayered Privacy Notice Available at http www hunton com files tbl s47Details FileUpload265 1405 Ten Steps whitepaper pdf ASTM Standard Specification for Relationship Between a Person Consumer and a Supplier of an Electronic Personal Consumer Health Record Available at http www astm org cgi bin SoftCart exe DATABASE CART REDLINE PAGES E2211 htm E mystore Another useful resource is the work of the W3 Platform for Privacy Preferences P3P Project Although its work has been suspended P3P made an important contribution toward creating a machine readable standard for expressing privacy preferences See http www w3 org P3P The Center for Information Policy Leadership Hunton Williams LLP Ten Steps to Develop a Multilayered Privacy Notice February 14 2006 page 1 Available at http www hunton com files tbl s47Details FileUpload265 1405 Ten Steps whitepaper pdf TRUSTe Your Online Privacy Policy White Paper 2004 p 5 6 Accessed online on August 16 2007 at the following URL http www truste org pdf WriteAGreatPrivacyPolicy pdf TRUSTe Your Online Privacy Policy White Paper 2004 page 6 Accessed online on August 16 2007 at the following URL http www truste org pdf WriteAGreatPrivacyPolicy pdf Federal Trade Commission Fair Information Practice Principles Accessed online on August 16 2007 at the following URL http www ftc gov reports privacy3 fairinfo shtm Hochhauser Ph D Lost in the Fine Print Readability of Financial Privacy Notices July 2001 Accessed online on August 21 2007 at the following URL http www privacyrights org ar GLB Reading htm J Fam Pract 2002 51 642 645 Reading Level of Privacy Policies on Internet Health Web Sites Brief Report Accessed online on August 16 2007 at the following URL http findarticles com p articles mi m0689 is 7 51 ai 88999808 Altarum Review of Personal Health Record PHR Service Provider Market Privacy and Security January 5 2007 page 17 Accessed online on August 16 2007 at the following URL http www hhs gov healthit ahic materials 01 07 ce PrivacyReview pdf The Pew Internet American Life Project Fox Rainie et al The Online Health Care Revolution How the Web Helps Americans Take Better Care of Themselves November 26 2000 Accessed online on August 21 2007 at the following URL http www pewinternet org media Files Reports 2000 PIP Health Report pdf pdf CNET News com PC Invaders April 12 2002 Accessed online on August 16 2007 at the following URL http news com com 2009 1023 885144 html See Center for Democracy and Technology Spyware Enforcement Report Accessed online on October 1 2008 at the following URL http www cdt org privacy spyware 20080429enforcement pdf citing several case studies of unfair practices buried in End User License Agreements and privacy notices including FTC v Odysseus Marketing Inc and Walter Rines FTC Docket 042 3205 In the matter of Advertising com Inc a d b a Teknosurf com and John Ferber FTC Docket 042 3196 and State of New York v Direct Revenue LLC and Joshua Abram Alan Murray Daniel Kaufman Rodney Hook Federal Trade Commission Fair Information Practice Principles Accessed online on August 16 2007 at the following URL http www ftc gov reports privacy3 fairinfo shtm 2008 2011 Markle Foundation This work was originally published as part of a compendium called The Markle Connecting for Health Common Framework for Networked Personal Health Information It is made available free of charge but 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 Download CP2 Policy Notice to Consumers CP1 Network services for personal health records PHRs are emerging in a complex and often uncertain legal and policy environment In this paper we discuss the policy landscape in the context of emerging Consumer Access Services those services or organizations seeking to help individuals make electronic connections across multiple sources of their health information The Federal Regulatory Environment Regulations promulgated under the Health Insurance Portability and Accountability Act HIPAA in effect since April 2003 put in place a set of privacy and security rules intended to build safeguards into the practice of health care The Privacy Rule became law as public concern about the confidentiality of personal health information reached a high level coupled with a growing awareness that the lack of privacy safeguards in health care heightened the risk that some people would choose to withdraw from full participation in their own care Under current federal statute1 and regulation2 there are three categories of Covered Entities that must comply with the HIPAA Privacy Rule health care providers that transmit protected health information in electronic form to pay claims or engage in other standard transactions under the law health plans and health care clearinghouses 3 In this respect many of today s personal health record vendors do not qualify as Covered Entities and are not subject to the Privacy Rule The Privacy Rule includes Requirements that Covered Entities provide notice to consumers of their rights and protections Requirements that Covered Entities provide consumers with copies of or access to their information if requested 4 Permissions for providers to use and disclose patient data without consent for treatment payment and health care operations a broad category known as TPO Limitations on certain other uses and disclosures of identifiable patient information Requirements for providers and other Covered Entities to obtain patient authorization for disclosures not expressly permitted by the Privacy Rule Specific rules that permit disclosure under detailed conditions to researchers law enforcement and public health officials without the consumer s consent or authorization Oversight and enforcement mechanisms Through its Office for Civil Rights 5 the U S Department of Health and Human Services HHS enforces the Privacy Rule directly as applied to Covered Entities The Department of Justice is empowered to investigate and prosecute criminal violations of the law and state enforcement mechanisms are also empowered to oversee and apply the law According to the HHS Office for Civil Rights since the Privacy Rule went into effect in April 2003 more than 29 000 voluntary complaints have been received about 80 percent of which have been resolved As of July 31 2007 corrective action has been taken in fewer than 5 000 cases most of which have been in the past 2 years 6 There have been no civil penalties assessed and only a handful of criminal prosecutions under the Privacy Rule Related to the enforcement challenge are difficulties in interpretation of the Privacy Rule Although it has been in place since 2003 many Covered Entities remain confused about what the Privacy Rule does and does not allow as documented most recently by the Health Information Privacy and Security Collaborative HISPC 7 Questions About the Current Policy Framework Below are important questions on whether consumer protections and policy enforcement are adequate in the emerging environment of consumer data streams and networked PHRs Question 1 Does the HIPAA Privacy Rule apply to emerging Consumer Access Services Answer Not necessarily It depends on whether the Consumer Access Service is operated by or on behalf of a Covered Entity The Privacy Rule is limited by the scope of the HIPAA statute Most notably HIPAA only applies directly to Covered Entities which many Consumer Access Services and PHRs are not To the extent that a Covered Entity does offer a PHR directly to its patients or members the Covered Entity must comply with the Privacy Rule If the Covered Entity contracts with a third party to provide a PHR to consumers on its behalf it must enter into a Business Associate Agreement which limits that contractor s use and disclosure of health information These downstream entities are restricted in their use and disclosure only through contract law In general Business Associates are not directly regulated under HIPAA As a result if a Business Associate violates the contract the Covered Entity can take the Business Associate to court under contract law But it is the Covered Entity not the Business Associate that may be subject to regulatory enforcement action for the violation The regulation states that the Covered Entity is only liable when it knew of a Business Associate s breaches and took no action Thus if a Covered Entity provides a Consumer Access Service to its patients members or employees then the Covered Entity must comply with Privacy Rule requirements even if the actual service is supplied by a vendor under a Business Associate agreement However if the Consumer Access Service is neither a Covered Entity nor acting as a Business Associate of a Covered Entity it is not governed by the federal regulation Such a Consumer Access Service may receive identifiable patient health data that originated at a Covered Entity8 primarily in two ways From a Covered Entity based on an authorization from the consumer From the consumer who has obtained copies of her medical records directly from the Covered Entity and supplied them separately to the Consumer Access Service Some emerging Consumer Access Services are structured to encourage consumers to authorize their providers and plans to disclose health information directly to the Consumer Access Service The public may not be aware that once the Consumer Access Service has received information from a Covered Entity based on the consumer s signed authorization that information is no longer covered under the federal Privacy Rule In other words HIPAA privacy protections do not follow the data they only apply when in the hands of a Covered Entity or its Business Associate s Non covered organizations are not required to do many activities that are required of HIPAA Covered Entities For example they are not required to train their staffs about privacy and confidentiality or maintain an accounting of disclosures or require an authorization before re disclosing health information to other non covered entities However it is important to note that any organization in this marketplace whether HIPAA covered or not can exceed the Privacy Rule requirements Organizations may provide for higher levels of individual control over data flowing in or out of PHRs than are afforded to consumers under the Privacy Rule The HIPAA Privacy Rule did contemplate the use of networked health information systems but only within the constraints of the Covered Entity Business Associate framework It is important to note that the HIPAA statute devoted little attention to e health and privacy let alone Consumer Access Services or networked PHRs 9 All new PHRs and Consumer Access Services demand thoughtful and carefully crafted practices to balance the need for consumer data streams to flow more readily with the need to protect privacy A comprehensive approach to privacy is warranted in light of the emerging environment See the Overview document for Nine Core Principles for addressing privacy in a networked environment Question 2 How do HIPAA treatment payment and operations TPO rules apply when Covered Entities act as Consumer Access Services or offer PHRs Answer To answer this question consider the case of a person named Millie First imagine that Millie goes to the doctor and receives a notice saying that her information can be used in various ways allowed under HIPAA A year later she visits the doctor s office and gets a treatment and the doctor sends a claim to Millie s health insurance company The insurance company then processes and pays the claim The event generates several transactions and copies of information about Millie none of which require Millie s specific consent This is because under HIPAA Covered Entities may make certain disclosures of personal health information for purposes of treatment payment and health care operations TPO without any consent from the consumer 10 Then imagine that the insurance company offers Millie an online PHR that lets her view copies of that claims history The mere fact that Millie is given an online account to view copies of claims does not change the nature of the health plan s permissible uses of the information under TPO rules 11 Now let s imagine that the PHR offers Millie a chance to add her own contributions of information For example she could fill out a patient diary or a health risk assessment or perhaps enter a past diagnosis of which the health plan had previously been unaware Or maybe Millie can connect her health plan PHR account to another source of health information about her such as a home monitoring device or even from her other doctors or pharmacies Do these new streams of information about Millie captured through a PHR from a Covered Entity fall under the TPO rules Can they be used or disclosed the same way the claim from her doctor s office might be Clearly such issues about HIPAA and TPO are clearly beyond the understanding of the average consumer A more relevant question therefore is whether people like Millie can make informed choices about new personal health information services Whether covered by HIPAA or not organizations that offer Consumer Access Services or PHRs must have sound and transparent practices for consumer notice and consent as well as the other areas of this framework Sound practices for obtaining consumer consent include making choices proportional That is the more unexpected or disclosing the activity the more specific the consent mechanism required to authorize it See CP2 Policy Notice to Consumers and CP3 Consumer Consent to Collections Uses and Disclosures of Information Question 3 Do state laws provide adequate protection of and support for consumer data streams Answer Existing state health privacy laws are generally directed at health care providers and health plans The vast majority are virtually silent on emerging developments such as regional health information exchanges or networked PHRs 12 The result is that state law may restrict the circumstances under which a Health Data Source may send data to a PHR such as by requiring patient consent but does not protect the information once it has been transferred to the PHR Furthermore to the extent that state laws may protect health information in consumer data streams they often do so inconsistently HIPAA sets a floor of protections and does not displace state laws that are more stringently privacy protective Many states have more stringent safeguards in place to impose condition or issue specific safeguards i e HIV AIDS mental health genetic information or to address consumer access to their own records e g requiring health care entities to respond more rapidly to consumer requests for records than HIPAA requires These state laws may impose differing standards on different Health Data Sources and impact their ability to transfer health information to a PHR The National Council of State Legislatures NCSL and the National Governor s Association have launched an initiative to explore the need for new and consistent policies Efforts are also underway at the federal level in the Health Information Privacy and Security Collaboration and in legislative proposals to harmonize state health privacy laws to avoid variations that some believe impede interoperability and data sharing However a number of studies suggest that most variations in state law can be addressed through policy and technical solutions 13 Overall however the lack of federal and state regulation as well as the evolving interplay of state and federal laws results in an uncertain regulatory environment This can be chilling to the nascent market of Consumer Access Services Fundamental questions about consumer consent for uses and disclosures notice enforcement and chain of trust agreements are being determined outside of the regulatory environment and many companies are uncertain how to proceed in their early products and services Question 4 Will business practices evolve to enhance consumer data streams and foster consumer trust Answer Perhaps but certainly not yet and not consistently across the industry There is some hope that vendors recognition of public concern about safeguarding personal information will drive competition to produce services with stronger and more responsive privacy components Today in the absence of regulatory clarity most PHR ventures develop and adopt their own privacy and security policies either as individual companies or through trade and professional associations However such policies are inconsistent and often confusing Because consumers do not have simple or foolproof ways to distinguish good privacy practices from bad organizations may not be motivated to compete on the basis of privacy protection and or determine that mining personal data is more profitable than investing in stronger privacy protections It is not clear there is a market for privacy since many of the practices that would assure privacy safeguards are not observable by consumers The potential role of regulation of PHRs and Consumer Access Services by the Federal Trade Commission FTC is discussed in CP9 Enforcement of Policies Question 5 Is there a need for a Common Framework of practices for Consumer Access Services and networked PHRs Answer Yes for the following reasons The status quo poses increased risk If Consumer Access Services are successful in aggregating information from multiple sources this creates both potential benefit and potential risk of exposure for the individual The status quo lacks regulatory clarity The characteristics of the emerging PHR market suggest that at least some services will remain wholly or in part beyond the auspices of HIPAA There is no consensus for how policies will be enforced in such situations The status quo confuses consumers about privacy protections Faced with myriad PHR offerings and handlers of their electronic health data consumers cannot be expected to be able to discern whether or not a particular data flow is covered by HIPAA or state law In the absence of consistent privacy assurances that apply to all Consumer Access Services across the nation many consumers will be making choices in an uncertain policy landscape The status quo keeps notice and consent moving targets Recent surveys of PHRs indicate wide variance in privacy policies and forthrightness about critical issues such as how information will be used 14 Notices to consumers are typically lengthy in fine print with language that may be simultaneously technical and vague Policies are non standardized and often disorganized with multiple notifications about how personal data are collected stored protected used and disclosed Without consistent policies this wide variance of privacy and security practice disclosure is likely to continue leading to a confusing marketplace Common practices will aid trust on a network Certainly there must be a clear need for private entities to share data on the consumer s behalf However a truly open and innovative market that can meet consumer needs is unlikely to flourish without a set of common practices that manage risk acceptably for Consumers Health Data Sources and Consumer Access Services Public Concern about Privacy Frequent news reports remind Americans about the risks to their health privacy by theft breach and unauthorized or unwelcome disclosure of their personal health information i Eight in 10 Americans say they are very concerned about the risk of identity theft and fraud with networked personal health records according to a Markle Foundation 2006 survey ii Concerns are intensified in the context of electronic information sharing as documented by a 2007 survey showing that the public believes a computer based medical records system is less secure than a paper based one iii Three in five Americans believe that their health information is not adequately protected under federal and state laws and current business practices according to a Harris Interactive study commissioned by the Institute of Medicine iv Moreover such concerns can lead to privacy protective behaviors that actually undermine health particularly among members of the most vulnerable demographic groups Surveys consistently show that people with chronic diseases and racial and ethnic minorities are the most likely to withhold information from providers and avoid care to shield themselves from discrimination stigma and unwanted exposure v A collection of abstracts of news reports addressing health privacy events is available on the web site of Health Privacy Project at http www healthprivacy org usr doc Privacystories pdf Markle Foundation December 7 2006 press announcement Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care Available at http www markle org publications 1214 survey finds americans want electronic personal health information improve own hea See Health Care Information Technology Summit Survey Results by Kaiser Permanente May 2 2007 Available at http xnet kp org newscenter stories nat 2007 05 02 b html Government Health IT Surveys Show Public Distrusts HIPAA Researchers Detest It Accessed online on October 3 2007 at the following URL http www govhealthit com online news 350058 1 html See Ann Bagchi Lorenzo Moreno and Raquel af Ursin Considerations in Designing Personal Health Records for Underserved Populations April 2007 Available at http www mathematica mpr com publications pdfs hlthcaredisparib1 pdf 42 U S C 1302 a 42 U S C 1320d 1320d 8 and sec 264 of Pub L 104 191 110 Stat 2033 2034 42 U S C 1320d 2 note and 5 U S C 552 Unofficial Version of HIPAA Administrative Simplification Regulation Text 45 CFR Parts 160 162 and 164 as amended through February 16 2006 available at http www hhs gov ocr privacy hipaa administrative privacyrule adminsimpregtext pdf 45 CFR 164 103 Connecting for Health summarized HIPAA regulations related to consumer access in the Common Framework document Patient s Access to Their Own Health Information Available online at http www markle org sites default files P6 Patients Access pdf The OCR web page has several resources related to HIPAA See http www hhs gov ocr hipaa OCR HIPAA Compliance and Enforcement Numbers at a Glance Accessed online on August 24 2007 at the following URL http www hhs gov ocr privacy hipaa enforcement highlights numbersglance0707 html Linda L Dimitropoulos RTI International Privacy and Security Solutions for Interoperable Health Information Exchange Assessment of Variation and Analysis of Solutions Executive Summary and Nationwide Summary June 20 2007 Accessed online on August 24 2007 at the following URL http www rti org pubs avas execsumm pdf See also http www rti org pubs nationwide execsumm pdf We emphasize that the diagrams depict possible flows of information that originated at a Covered Entity to a Consumer Access Service or PHR The diagrams do not depict information that consumers may contribute themselves e g patient diaries self populated problem lists monitoring device data etc See Mark Rothstein 2007 testimony to the National Committee on Vital Health Statistics and Congress Accessed online on September 6 2007 at the following URLs http www hhs gov healthit ahic materials 06 07 cps ncvhs pdf http hsgac senate gov public files testimonyrothstien pdf For definitions of treatment payment and operations see Uses and Disclosures For Treatment Payment And Health Care Operations 45 CFR 164 506 Accessed online on April 10 2008 at the following URL http www hhs gov ocr hipaa guidelines sharingfortpo pdf Some plans may choose to segregate copies of information they provide to consumers through PHRs from the copies of information they use for their TPO related uses Other plans may not support this concept of a firewall between their TPO operations and their PHR operations A notable exception is California law which treats a corporation organized for the purpose of maintaining medical information in order to make the information available to the patient or to a provider of health care at the request of the patient or a provider of health care for purposes of diagnosis or treatment of the patient as a provider of health care subject to the requirements of the state s Confidentiality of Medical Information Act See Cal Civ Code 56 06 For a survey of state privacy laws see Georgetown University The State of Health Privacy Second Edition A Survey of State Health Privacy Statutes June 2002 Accessed online on August 24 2007 at the following URL http hpi georgetown edu privacy pdfs statereport1 pdf See also the report issued in 2007 by the George Washington University that concludes that much of these state laws do not act as a barrier to health information exchange and interoperability Reproduced with permission from BNA s Health Care Policy Report Vol 15 No 11 03 19 2007 Copyright Altarum Review of the Personal Health Record PHR Service Provider Market Privacy and Security March 13 2007 Available at http www hhs gov healthit ahic materials 03 07 ce report doc See also CP2 Policy Notice to Consumers 2008 2011 Markle Foundation This work was originally published as part of a compendium called The Markle Connecting for Health Common Framework for Networked Personal Health Information It is made available free of charge but 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 Download CP1 Policy Overview Network Participants The average person s ability to access data and communicate electronically is proliferating exponentially Consumer adoption of digitally networked services has transformed the culture of many industries often in ways unimaginable barely a decade ago Consider these examples of rapid consumer adoption of web based technologies Communications E mail is now an indispensable tool of communication for hundreds of millions of people worldwide Instant messaging and Voice over Internet Protocol VoIP such as skype com are increasingly accepted alternatives to traditional telephones Search The indexing of online information places enormous research power in the hands of individuals People now Google or MapQuest without thinking of picking up a phone book or going to a library Search engines are exposing ever more granular information such as full text searches of vast libraries of books or the estimated value of your home or the presence of a registered sex offender next door Collective contributions by customers add value to search engine results as demonstrated by the niche layers that individuals can add to Google maps E commerce Websites such as Amazon eBay and Craigslist create ever expanding communities of buyers and sellers which in turn create ever expanding content inventory and transactions Opening up online access to previously proprietary networks such as real estate listings and flight schedules has precipitated dramatic new conveniences for consumers and efficiencies for industry Personal finance Consumers embrace ATMs debit cards personal finance and tax software and online banking and investment brokerage services Such online transactions and self management tools replace mail phone and retail encounters with financial institutions Entertainment The explosive popularity of Apple Computer s iPod represents a progression toward individual manipulation and portability of entertainment media and other data No longer passive consumers of radio program director decisions individuals increasingly create and share their own playlists and podcasts In another example fantasy sports create networks of enthusiasts more deeply engaged than mere spectators of events Content Perhaps the most interesting techno social trend is how newly networked consumers generate whole new bodies of content Bloggers who use software that makes it easy to self publish on the web are directly challenging political and journalistic institutions among others People are now pouring their innermost thoughts and images into the worldwide digital stream through online communities such as MySpace com and YouTube com Wikipedia represents a related and equally powerful trend online collaborative publishing that derives its authority through the self regulating nature of open communities MySpace and Wikipedia in particular illustrate a phenomenal expansiveness of online community content creation By most accounts 1 2 both have emerged in about 18 months to join the 20 most popular sites on the web Wikipedia is now the most frequently visited reference site on the Internet 3 This paper does not attempt a comprehensive analysis of such successful innovations in sectors other than health care but we observe that they share a few basic traits They are highly useful All of the examples cited above provide rapid utility and convenience by taking available digital data making it digestible and providing immediate value to consumers They are easy to use Web applications that have diffused broadly typically deliver not only high utility but also a simple user interface that does not limit or burden the consumer 4 They are free or inexpensive for consumers to use Whether supported through advertisements or not for profit foundations dramatic growth applications generally collect small or no fees from consumers They rapidly proliferate due to the power of networks Consumers connect to various networks via their credit cards cell phones e mail accounts affinity club memberships and so on Search engines point to information residing across a vast number of sources all tied together by the Internet which itself is a network of networks Point to point communication tools like e mail and cell phones work because they can slice across competing networks Credit cards work across competing banks because there are worldwide networks that tie them together People trust strangers on eBay because there is a trusted payment network PayPal as well as a network of buyers and sellers who provide accountability by collectively and publicly rating each other Sites like Wikipedia Craigslist and MySpace have created arrays of communities of people with similar interests A key ingredient to the successes cited above is a fresh openness toward consumer access to and contribution of information By contrast the health care industry has moved more slowly toward providing consumers with online access to health data and interactive services Personal health information is different often more complex scattered sensitive less structured than the other types of information cited above However electronic personal health records PHRs represent an emerging vehicle to increase consumer participation in the health sector Personal Health Records PHRs PHRs encompass a wide variety of applications that enable people to collect view manage or share copies of their health information or transactions electronically Many PHR applications in existence today facilitate the viewing of health information A new generation of PHRs promotes the development of multiple and diverse applications that act on personal health information to help users with specific tasks Although there are many variants PHRs are based on the fundamental concept of facilitating an individual s access to and creation of personal health information in a usable computer application that the individual or a designee controls We do not envision PHRs as a substitute for the professional and legal obligation for recordkeeping by health care professionals and entities However they do portend a beneficial trend toward greater engagement of consumers in their own health and health care Today s PHRs are generally un networked They typically require the consumer to enter data manually or get a view of information from a single entity such as one health plan one pharmacy or perhaps one health care provider s electronic health record EHR Yet most people have relationships with many different doctors and health care entities particularly those Americans with multiple chronic conditions more than 60 million today and estimated to reach 81 million by 20205 must coordinate their care across several providers and entities If the PHR is limited to one particular relationship it may not meet the long term needs of many whose information is dispersed across organizations Some people in a stable relationship with one integrated delivery system may today have their information adequately accessible through an application from that institution However for most people over time PHRs would be much more useful if they were networked to aggregate the consumer s health information across multiple sources e g the consumer s insurance eligibility and claims her records from all of her doctors her lab results her pharmacy services her diagnostic imaging etc Networked PHRs as Tools for Transformation The mere aggregation of the consumer s data however should not be an end in itself The true test is whether the network makes it easier for ordinary people to coordinate and engage more actively in their own health and health care We see a networked environment for PHRs as a foundation for Americans to improve the quality and safety of the care they receive to communicate better with their doctors to manage their own health and to take care of loved ones This paper argues that consumers can help accelerate transformative change particularly in a networked information environment However we emphasize that clinicians also have a critical role in realizing the full potential of networked PHRs Consumers continue to see doctors and other health professionals as the key agents of their care and the most trusted hosts of their personal health information To take advantage of networked personal health information both consumers and clinicians must be open to changes in their relationships responsibilities and workflows Network enabled efficiencies and safety improvements are more likely to occur if consumers and health care professionals act as partners who share access to and responsibility for updating personal health information The status quo in which most personal health information under the custodianship of providers payers and other entities is largely un networked makes it more difficult for consumers to gather their data from multiple sources more difficult to choose freely among providers and thus more difficult to manage their health The Rationale for Networking Consumers Entrenched problems in the American health care system are well documented Among the oft cited deficiencies Fragmentation that leads to inefficiency and duplication of efforts and costs 6 7 Disappointing levels of safety and quality that lead to high rates of medical errors 8 9 10 Frequent unavailability of vital information at point of care 11 High costs that are growing at an unsustainable rate 12 13 An overall lack of patient centeredness 14 Rapid consumer adoption of newly networked services has proven to be possible indeed phenomenal in other sectors Consumers can adapt to technology and culture transformation more rapidly than large health care institutions with long histories of business processes and legacy systems Furthermore even as the majority of clinicians continue to keep consumers data on paper other important personal health information namely claims pharmacy diagnostic images and lab data are available in digital form today We conclude that the immediate effort to catalyze health care transformation must include a strategy to create a networked environment for PHRs and related technologies that takes advantage of these currently available digital data streams Providers can gradually form and join networks as their systems increasingly interoperate In fact networked connections to PHRs could help accelerate the EHR adoption curve as clinicians see advantages to joining the network There are additional strong rationales for involving consumers in a much needed transformation toward greater information access and transparency First the health care consumer has the largest stake in the contents of such information The consumer s life is put at risk when preventable errors occur due to lack of information Second the consumer is the ultimate payer of health care services Consumers are being asked to pay directly for a larger proportion of their care

    Original URL path: http://www.markle.org/publications?term_node_tid_depth=15&tid_1=All&date_filter[value]=&page=12 (2016-02-10)
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  • Resources | Markle | Advancing America's Future
    Rowan and Stephen King a partner of the Omidyar Network The event brings together civil and private sector entrepreneurs policy makers and leaders from academia and non profit research to stimulate action in open governance open data and transparency The conference additionally focuses on how web and mobile technologies can drive citizen engagement and calls upon speakers case studies Note Video from the event is available at openup12 org livestream Gilman Louie Joins the Board of the Markle Foundation NEW YORK NY The Markle Foundation announced today that Gilman Louie has joined its Board of Directors Mr Louie is currently a partner at Alsop Louie Partners a San Francisco based venture capital firm Gilman Louie has been a pioneer in this country s technology economy His vast experience fostering entrepreneurship and enhancing national security will help Markle advance the use of information technology to address the most difficult problems facing this nation said Zoë Baird president of Markle We are delighted that this leading technologist and business leader will help us achieve Markle s goals to improve people s lives through information technology Mr Louie is the founder and former CEO of In Q Tel a strategic venture fund created to help enhance national security by connecting the Central Intelligence Agency and United States intelligence community with venture backed entrepreneurial companies Prior to joining In Q Tel in 1999 Mr Louie was a pioneer in the interactive entertainment industry There he designed and developed the Falcon F 16 flight simulator and he licensed Tetris the world s most popular computer game from its developers in the Soviet Union Mr Louie also founded and ran Spectrum Holobyte which was acquired by Hasbro Corporation where he served as chief creative officer of Hasbro Interactive and general manager of the Games com group Mr Louie is a member of the National Commission for Review of Research and Development Programs of the United States Intelligence Community vice chairman of the Standing Committee on Technology Insight Gauge Evaluate and Review for the United States National Academies a member of the Technical Advisory Group for the United States Senate Select Committee on Intelligence and has served on the Markle Task Force on National Security in the Information Age In recognition of his intelligence work Mr Louie was the recipient of the 2008 Director of National Intelligence Medallion and the 2006 Director s Award from the Director of the Central Intelligence Agency Mr Louie graduated in 1983 from San Francisco State University and attended the Advanced Management Program at Harvard Business School in 1997 Contact Andrew Peters 301 280 5728 or email protected Techonomy 2012 Techonomy 2012 brings together a diversity of expert voices to discuss how the exponential pace of technology progress makes possible a new world A wave of accelerating change driven by technology s advance is washing over our lives bringing great potential for business and social progress On November 13 Markle President Zoë Baird is moderating the panel America s Economic Opportunity in

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  • Homepage News Events | Markle | Advancing America's Future
    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 News Events 2010 HIMSS Annual Conference and Exhibition Josh Lemieux Markle s Director of Personal Health Technology presents Physician and Patient Views on Using PHRs National Survey Results Here Comes Everybody The Power of Organizing Without Organizations Author Clay Shirky discusses his book Here Comes Everybody The Power of Organizing Without Organizations Many Physicians Are Willing to Use Patients Electronic Personal Health Records but Doctors Differ by Location Gender and Practice A study published in the journal Health Affairs provides statistics on how physicians differ in their experience with PHR s and their willingness to use them in their practices HIT Policy Committee HIT Standards Committee PCAST Work Group Carol Diamond Managing Director of Health at Markle participates in a panel discussion on health information exchange and health care stakeholders Markle Foundation Names Laura Bailyn Senior Director Health Initiatives Ms Bailyn will work closely with Managing Director of Health Carol Diamond to help shape Markle s work in this important area of work Collecting And Sharing Data For Population Health A New Paradigm Health information technology IT has great potential to transform health care and inform population health goals in clinical research quality measurement and public safety Doctors and Patients Overwhelmingly Agree on Health IT Priorities to Improve Patient Care The Markle Survey of Health in a Networked Life is the first of its kind to compare the core values of physicians and the general public Social Media Guidelines The Social Media Guidelines describe acceptable forms of participating in online social networking venues on behalf of the Markle Foundation Health Information Technology A Few Years Of Magical Thinking One of the biggest obstacles to

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    the Carolinas the Women s Leadership Exchange Compass Award and the Lifetime Achievement Award by Business Leader magazine In addition she was a guest of First Lady Michelle Obama for the President s 2010 State of Union address She was also one of delegates from the U S Department of State at APEC 2011 and contributed to the September 16 2011 San Francisco Declaration Fu received a Master of Science in Computer Science from University of Illinois at Urbana Champaign and a bachelor s degree in computer science from University of California San Diego Daphne Kis Daphne Kis is a change agent strategist and operator As Principal of DKE she is a business strategy consultant to young companies and consigliore to CEOs of growing enterprises Her areas of expertise include content media education technology and business to business and direct to consumer marketplaces and platforms A frequent advisor to the Markle Foundation Kis was the current Initiative s original project director With a strong commitment to entrepreneurship Kis is a managing director at Golden Seeds an angel network that invests in women led companies and a lead mentor to the Entrepreneurs Roundtable Accelerator the German Accelerator New York and Springboard Enterprises where she further serves on the Technology and Media Council She has taught the principles of entrepreneurship and angel investor both in the U S and abroad Kis serves on the board of directors of Applywise an online management tool for the college application process FilmBuff an online platform for independent filmmakers and Hitfix a consumer site for entertainment news On the non profit front she is on the advisory board of Center4 which helps New York area health and human services organizations secure innovative technologies from emerging companies Kis is a national board director and chair of the advocacy committee for Young Audiences Arts for Learning a national affiliate network that serves more than five million children in nearly 7 000 schools and community centers around the country Previously Kis spent nearly two decades as co owner President and CEO of EDventure Holdings She published Release 1 0 a monthly analysis of the PC Internet business and produced the yearly PC Forum the industry s leading executive tech conference She led the company s acquisition by CNET Networks where as VP of Business to Business Programs she continued to develop new digital products Kis started her career as an art director for The Nation magazine She graduated from Hampshire College when it was a startup with a degree in social history and holds an MBA from NYU s Stern School of Business Doug Sosnik Doug Sosnik has advised U S presidents senators governors Fortune 100 corporations foundations and universities From his time at the Clinton White House to his experience in the U S Senate and the National Basketball Association Sosnik has been at the center of politics policy and communications Sosnik s most well known role was as a strategist in the Clinton White House where he served as a senior aide to President Bill Clinton for six years During this time Sosnik s titles included Senior Advisor for Policy and Strategy White House political director and Deputy Legislative Director Prior to working in the White House Sosnik served as Chief of Staff to Senator Christopher J Dodd of Connecticut Sosnik currently advises a long list of U S Senators governors and political candidates He also works with leading nonprofit organizations philanthropists and corporations including the National Basketball Association the Motion Picture Association of America CNBC and Planned Parenthood In 2006 Sosnik co authored The New York Times best selling book Applebee s America What Political Business and Religious Leaders Can Learn from Each Other which demonstrates the need for politicians business leaders and religious leaders to adapt in order to succeed in this era of immense change Sosnik received his Bachelor of Arts degree with honors from Duke University He currently resides in Washington DC with his wife Fabiana Jorge and their three children Christopher Phillip and Nicole Michael Levi Michael A Levi is the David M Rubenstein senior fellow for energy and the environment at the Council on Foreign Relations CFR and director of the CFR program on energy security and climate change He is an expert on climate change energy security arms control and nuclear terrorism Before joining CFR Levi was a nonresident science fellow and a science and technology fellow in foreign policy studies at the Brookings Institution Prior to that he was director of the Federation of American Scientists Strategic Security Project Levi is author of the recent books The Power Surge Energy Opportunity and the Battle for America s Future Oxford University Press and By All Means Necessary How China s Resource Quest is Changing the World with Elizabeth Economy Oxford University Press He is also the author of the books On Nuclear Terrorism Harvard University Press 2007 and with Michael O Hanlon The Future of Arms Control Brookings Institution Press 2005 He was project director for the CFR sponsored Independent Task Force on climate change cochaired by former governors Tom Vilsack and George Pataki His 2005 monograph with Michael D Arcy Untapped Potential U S Science and Technology Cooperation with the Islamic World was the first comprehensive study of science and technology in the Muslim world His recent writings include studies of natural gas exports the Canadian oil sands and the global politics and economics of clean energy innovation Dr Levi holds a BSc Hons in mathematical physics from Queen s University Kingston and an MA in physics from Princeton University where he studied string theory and cosmology He holds a PhD in war studies from the University of London King s College where he was the SSHRC William E Taylor fellow Levi is a National Intelligence Council Associate for economics and a member of the Strategic Advisory Council for NewWorld Capital LLC He lives in New York Vivek Kundra Vivek Kundra is executive vice president industries at Salesforce com

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  • Meaningful Use Final Rule Must Create Pathway to Progress on Core Health Goals | Markle | Advancing America's Future
    The Lawfare Blog Library Quick Links Our Book America s Moment Archive Media Releases Member Commentary President s Letters Videos Meaningful Use Final Rule Must Create Pathway to Progress on Core Health Goals Publication Date Friday April 23 2010 April 23 2010 Dear Secretary Sebelius Dr Blumenthal Ms Frizzera and Mr Trenkle The final federal regulation of Meaningful Use of health information technology health IT under the Recovery Act will be a powerful signal for the future of US health care By and large the US Department of Health and Human Services HHS has drafted a regulation with the right priorities As the department prepares its final rules by which providers and hospitals may qualify for health IT incentives it is critical not to lose sight of the core goals of Meaningful Use improving health and efficient use of health care resources protecting privacy encouraging innovation and broad participation across many health care settings By emphasizing the term meaningful use Congress clearly intended that the subsidies not cover the mere purchase of technology Increasing the number of doctors offices or hospitals with health IT systems is not enough the technology must be a tool to achieve specifically articulated and achievable health improvement and cost effectiveness goals The Meaningful Use incentives also can be a powerful driver to help physicians and hospitals prepare for implementation of recently enacted health care reform legislation That will require the Government to retain core values that are currently well drafted in the Notice of Proposed Rulemaking NPRM such as declaring that the goal of health IT is to improve health quality and efficiency embracing patient engagement as a key aspect of Meaningful Use establishing goals objectives and metrics for health improvement rather than focusing merely on acquiring technology adopting a phased approach to allow for step wise provider and hospital adoption of health IT as well as technology development and testing at initial stages making progress on aligning various HHS quality reporting initiatives and eliminating the need for duplicative reporting Through extensive collaboration the Markle Foundation the Center for American Progress and the Engelberg Center for Health Care Reform at Brookings have recommended several modifications to the NPRM that would adjust several of these metrics and streamline administrative overhead for providers while retaining critical foundational process and outcomes measures that will lead to health IT being used meaningfully to improve health care We have submitted comments intended to balance the very real implementation concerns of providers with the needs of patients and families to rapidly experience more effective efficient and quality driven care aided by health IT For providers to merit the taxpayer financed subsidies HHS must insist on using the Phase I period to begin the pathway toward improved results reducing hospital readmissions improving medication management safe medication use and effective medication management for heart disease diabetes asthma mental health conditions and hospital procedures providing individuals with electronic copies of their personal health information improving care coordination and reducing gaps in care improving chronic

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  • Resources | Markle | Advancing America's Future
    We work in the following areas Joint Statement on Meaningful Use Rule WASHINGTON DC The Markle Foundation the Center for American Progress and the Engelberg Center for Health Care Reform at Brookings today emphasized the importance of new federal rules on health information technology The U S Department of Health and Human Services today released regulations on implementing an incentive program for Meaningful Use of electronic health records EHRs The program authorized under the 2009 economic stimulus Recovery Act represents the largest investment in modernizing health information technology in U S history These regulations provide a promising foundation for encouraging the effective use of health information to improve patient care With coming payment reforms these incentives will give doctors and hospitals needed support for improving health care quality and efficiency said Mark B McClellan MD PhD Director Engelberg Center for Health Care Reform and Leonard D Schaeffer Chair in Health Policy Studies at the Brookings Institution The two words are critical together meaningful and use said Carol Diamond MD MPH managing director of the Markle Foundation The final rule has added flexibility to encourage providers to participate in the first phase of this critical effort to improve health promote efficiency drive innovation and protect privacy Now providers and patients can strive for meaningful use of modern information tools This marks a new beginning in the effort to infuse the health sector with the power of information said Peter Basch MD senior fellow at the Center for American Progress In the long run there is much more to be done to align quality and efficiency in care through health care and payment reform Basch said But today this incentive program provides a vital boost for doctors and hospitals to invest now in health IT and its optimal use for improving outcomes coordinating care and engaging their patients in health improvement For the past 18 months the three organizations convened a broad collaboration of experts and organizations to advise HHS on the new rules focusing on setting ambitious but achievable targets for the following priorities Establishing goals and metrics in terms of improving health and efficiency not mere purchase of technology Embracing patient engagement as a key aspect of Meaningful Use Adopting a phased approach to allow for technology development and testing at initial stages Prioritizing requirements for reporting quality results to avoid unnecessary burdens on physicians and hospitals Shaping technology requirements in a way that encourages innovation We congratulate the many people who worked on the essential details to govern this program Markle the Center for American Progress and the Engelberg Center at Brookings said in a joint statement The requirements must be ambitious enough to make the investments worthwhile but not so onerous that they discourage large numbers of doctors and hospitals from participating We look forward to reviewing the final rule in detail The Markle Foundation works to realize the full potential of information and information technology to address critical public needs particularly in the areas of health and national security Markle collaborates with innovators and thought leaders from the public and private sectors whose expertise lies in the areas of information technology privacy civil liberties health and national security The Markle Health Program is committed to accelerating the ability of patients and consumers to use information technology to improve their health and health care while protecting patient privacy The Center for American Progress is a nonpartisan research and educational institute dedicated to promoting a strong just and free America that ensures opportunity for all We believe that Americans are bound together by a common commitment to these values and we aspire to ensure that our national policies reflect these values We work to find progressive and pragmatic solutions to significant domestic and international problems and develop policy proposals that foster a government that is of the people by the people and for the people The Engelberg Center for Health Care Reform at Brookings is committed to producing innovative solutions that will drive reform of our nation s health care system The Center s mission is to develop data driven practical policy solutions that promote broad access to high quality affordable and innovative care in the United States The Center conducts research makes policy recommendations and facilitates the development of new consensus around key issues and provides technical support to implement and evaluate new solutions in collaboration with a broad range of stakeholders AMA Markle Foundation Present PHR Survey Research at HIMSS ATLANTA GA The American Medical Association AMA and the Markle Foundation joined together to conduct coordinated surveys that examine physician and patient views of electronic personal health records PHRs Selected results of these surveys are being presented today at the 2010 HIMSS Conference in Atlanta Our surveys over the years have found that large numbers of consumers see the benefits of accessing their health information and connecting to health services online Our work with the AMA validates that many doctors also see the potential of this rapidly evolving technology said Carol Diamond MD MPH managing director at the Markle Foundation By asking physicians and patients comparable questions about PHRs we see that patients and physicians have some similar and some contrasting views Members of both groups often agree on the potential of PHRs to help individual patients and their families better manage their care but many doctors also express important concerns about PHR use like privacy and accuracy of data said Matthew Wynia MD MPH director of the Institute for Ethics at the AMA Four out of five Americans believe using an online PHR would provide major benefits to individuals in managing their health and health care services with 86 percent or higher saying that PHRs could help them avoid duplicated tests keep doctors informed move more easily from doctor to doctor check the accuracy of their medical records and track personal health expenses While less than 20 percent of physicians have significant experience using PHRs half agree that PHRs can help empower patients to participate in their care and 44 percent are willing to make use of PHRs as part of their clinical work Both patients and physicians cited privacy as a chief concern with PHRs Of those surveyed 87 to 92 percent of consumers said that privacy protection would factor into their decision to use an online PHR Similarly 70 percent of physicians agreed that PHRs may not have adequate privacy protections Other concerns cited among physicians include the possibility that PHRs could contain inaccurate information 79 to 85 percent were concerned about this create liability risks 76 percent and that physicians would not be reimbursed for time spent reviewing PHRs 63 percent The great majority of physicians haven t used PHRs yet so these concerns reflect expectations more than current practice Dr Wynia said These surveys can help us understand and proactively address physicians and patients hopes and concerns about PHRs which is critical to moving forward and using these new tools effectively said Dr Wynia Today s presentation provides some interesting glimpses into attitudes among doctors and the public as health IT tools become more widespread and much more study is needed said Josh Lemieux director of personal health technology at Markle It s increasingly important to understand how individuals use the Internet to pull together copies of their health information generate new information about themselves such as with home monitoring devices and share electronic information with doctors in order to make more informed health decisions The Markle Survey of Consumers The questionnaire was developed by Professor Alan F Westin and Josh Lemieux of the Markle Foundation with inputs from the Markle staff and Dr Wynia Knowledge Networks created a national sample of 1 580 respondents representative of the total adult 19 US population estimated at 228 million covering both persons who use the Internet and those who do not Responses were collected by a special online process between May 13 and 22 2008 Knowledge Networks places the error rate for this sample at 2 5 percent The AMA Survey of Physicians The survey was developed through collaboration between the Institute for Ethics and AMA Health Information Technology Initiatives with funding from the Markle Foundation Results are derived from a national survey in 2008 09 of patient care physicians with oversampling of OB GYNs and psychiatrists The analysis is based on 856 respondents response rate 52 1 percent and is weighted to reflect the general population of physicians The figure of 44 percent willingness to use PHRs is also statistically adjusted to account for variations in physician specialty gender and other demographic variables the unadjusted value is 42 percent Meaningful Investment of 19 Billion on Health Information Technology WASHINGTON DC Today the Markle Foundation hosts a forum to discuss the 19 billion allocated to investments in health information technology IT under the American Recovery and Reinvestment Act ARRA Leaders in health care and information technology will meet with government and policy experts to talk about how these health IT investments can be directed toward improving health care outcomes protecting patient privacy and reducing growth in health care costs laying the groundwork for health reform Markle Connecting for Health released key principles supported by a diverse group of health and technology leaders outlining an initial approach to getting health IT right under ARRA The leaders present here will be instrumental in achieving the goals of ARRA and in making sure that these investments support broader health reform efforts said Zoë Baird President of the Markle Foundation The event announces the release by Markle Connecting for Health of a new document entitled Achieving the Health Objectives Under ARRA A Framework for Meaningful Use and Certified or Qualified EHR The definition of meaningful use will determine how clinicians and hospitals qualify for the health IT incentives included in the economic stimulus law The document was developed with the collaboration of a diverse group of consumer business and health organizations Individuals supporting the document come from a wide array of organizations including AARP Allscripts America s Health Insurance Plans American Academy of Family Physicians American College of Cardiology American College of Emergency Physicians American Medical Association Association of Online Cancer Resources ACOR Blue Cross and Blue Shield Association Center for Democracy and Technology Center for Information Therapy Childbirth Connection Children s Health Fund Chilmark Research Consumers Union DocSite LLC Dossia DrFirst GenesysMD Google Health Care For All Health Level Seven Inc IBM Intel Corporation The Joint Commission Keas Inc McKesson Provider Technologies Medical Group Management Association Mental Health America Microsoft Corporation National Coalition for Cancer Survivorship National Committee for Quality Assurance NCQA National Consumers League National Partnership for Women Families National Patient Advocate Foundation NewYork Presbyterian Hospital and NewYork Presbyterian Healthcare System Northwest Health Foundation Pacific Business Group on Health Prematics Inc ReachMyDoctor Surescripts WebMD Health Vanderbilt Center for Better Health Zix Corporation The consensus that we ve been able to build and continue to build around the principles in this paper is truly remarkable said Baird There is enormous potential to improve our health care system through modern information tools To do that we need to set clear goals define meaningful use as the use of information to improve health and adopt an approach to technology and standards that fosters market innovation The group advises practical starting points for using information to achieve the goals of ARRA It says a basic set of open standards are necessary along with assurances that systems bought with federal support are being used to achieve health improvement goals The group recommends an approach to technology that encourages innovation of tools and services particularly for clinicians in small office practices Meaningful use is not about technology for the sake of technology said Carol Diamond MD MPH Managing Director at the Markle Foundation and Chair of the Markle Connecting for Health Initiative It s about using that technology to improve health We must invest this money in ways that support information use to improve quality slow growth in costs and protect privacy without creating undue burden on clinicians and practices 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 Broad Collaboration Agrees on Priorities for Meaningful Use Success WASHINGTON DC The success of the new federal incentives program for health information technology IT will depend on a specific set of health improvement goals a prioritized set of metrics and the broad participation of health care providers and patients according to recommendations from an extensive collaborative of organizations Health care leaders from 56 diverse organizations filed a joint public comment on the program part of the economic stimulus in the American Recovery and Reinvestment Act The Markle Foundation the Center for American Progress and the Engelberg Center for Health Care Reform at Brookings coordinated the collaborative comments on the Centers for Medicare Medicaid Services Notice of Proposed Rulemaking for the Electronic Health Record Incentive Program Federal rules with a clear focused set of health goals and metrics will help move the nation closer to the day when it is commonplace for health care professionals and patients to communicate more efficiently and make better decisions with the aid of modern information tools the three coordinating organizations noted in releasing the comments The joint public comment recommends priorities to the U S Department of Health and Human Services HHS which will administer the new Medicare and Medicaid subsidies to doctors and hospitals for meaningful use of health IT beginning in 2011 We appreciate the difficult task HHS has taken on in writing the rules to carry out the program said Carol Diamond MD MPH managing director of the Markle Foundation We are pleased to offer several recommendations that we believe will support the implementation of the proposed rule so that the greatest numbers of consumers and clinicians alike can see the benefits of these public investments The groups comment urges HHS to make explicit a set of health improvement goals such as improving medication management and reducing readmissions to hospitals so that everyone including the public can play a role in contributing to these priorities Health information technology can be a very effective tool to help providers and patients get better less costly care That s why investments in health IT should prioritize key quality and outcome reporting requirements while also streamlining the administrative overhead said Mark McClellan MD PhD director of the Engelberg Center at Brookings and former Medicare and Medicaid administrator Our comments lay out a feasible path toward measuring and supporting a key goal of health care reform achieving better results for patients so that providers can focus their efforts on what s most important for reaching this goal Peter Basch MD senior fellow at the Center for American Progress said As a practicing physician who has gone through the process of implementing health IT I can say that it s critical to set a bar that is ambitious but also achievable for the many diverse practices and hospitals that might participate in this program We point out areas in which HHS can lower burdens on physicians without losing focus on the important goals of using health IT in ways that improve the patient s experience and outcomes The collaborative letter emphasized that the health IT program should Encourage broad participation of providers by prioritizing the requirements necessary to receive payments Ensure that providers report only summary statistics to HHS and not information that is patient level or personally identifiable and that they receive information back from the program to help them examine their own practices Enhance the ability of patients to obtain electronic copies of their health information The Markle Foundation works to realize the full potential of information and information technology to address critical public needs particularly in the areas of health and national security Markle collaborates with innovators and thought leaders from the public and private sectors whose expertise lies in the areas of information technology privacy civil liberties health and national security Markle s work in health is committed to accelerating the ability of the health care system patients and consumers to use information technology to improve health and health care while protecting patient privacy The Center for American Progress is a nonpartisan research and educational institute dedicated to promoting a strong just and free America that ensures opportunity for all We believe that Americans are bound together by a common commitment to these values and we aspire to ensure that our national policies reflect these values We work to find progressive and pragmatic solutions to significant domestic and international problems and develop policy proposals that foster a government that is of the people by the people and for the people The Engelberg Center for Health Care Reform at Brookings is committed to producing innovative solutions that will drive reform of our nation s health care system The Center s mission is to develop data driven practical policy solutions that promote broad access to high quality affordable and innovative care in the United States The Center conducts research makes policy recommendations and facilitates the development of new consensus around key issues and provides technical support to implement and evaluate new solutions in collaboration with a broad range of stakeholders Letter to the US Department of Health and Human Services on Meaningful Use of Health Information Technology By and large the US Department of Health and Human Services HHS has drafted a regulation with the right priorities As the department prepares its final rules by which

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  • Arnold Kanter | Markle | Advancing America's Future
    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 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 Arnold Kanter Founding member The Scowcroft Group Member Markle Task Force on National Security in the Information Age Arnold Kanter is a founding member of the Scowcroft Group Our Mission Markle works to realize the potential of information technology

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