Annotated Bibliography

    • November 15, 2009

Overall Related Resources

Chapter 1: Personal Health Records 101

Chapter 2: Project HealthDesign and the Next Generation of Personal Health Records

Chapter 3: Observations of Daily Living

Chapter 4: The Health Information Technology Landscape

Chapter 5: Personal Health Records and Health Information Technology—Costs, Policies and the Incentives Driving Adoption

Chapter 6: Privacy and Personal Health Records

Chapter 7: Personal Health Records—Business Models, Open Platforms and the Challenges Ahead

Overall Related Resources

  1. Project HealthDesign Web site Launched in 2006, Project HealthDesign: Rethinking the Power and Potential of Personal Health Records is a $10 million national program of the Pioneer Portfolio at RWJF. The Project HealthDesign Web site summarizes the work of the nine interdisciplinary grantee teams and supplies additional background resources on personal health records and the ethical, legal and social issues they raise. The Web site also hosts the official Project HealthDesign blog.
  2. Pioneering Ideas Blog The Pioneering Ideas blog is the Pioneer Portfolio’s premier forum for discussing innovative ideas with the potential to transform health and health care.
  3. Health E-Technologies Web site The Health E-Technologies resource center includes published studies that test whether patient access to Web-based portals for viewing medical records can improve chronic disease management. In addition, the site contains research tools—such as questionnaires, assessment surveys and implementation guidelines—developed by RWJF grantees.
  4. Connecting for Health Web site In addition to the comprehensive Connecting for Health Common Framework, this Web site offers policy perspectives and other resources for health policy decision-makers, health care providers and patients, and health information technology specialists and other professionals.

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Chapter 1: Personal Health Records 101

  1. The Power of PHRs: Personal Health Records in a Digital Age—Part 1 WGBH Interactive (2008) Part 1 of this four-part podcast series introduces the concept of personal health records (PHRs) to a general audience and outlines their defining characteristics.
  2. Personal Health Working Group Final Report Connecting for Health and the Markle Foundation (2003) This report is a comprehensive examination of the field of personal health records (PHRs) at its infancy. It laid the foundation for Connecting for Health’s later work on PHRs and the Common Framework, which was funded in part by the Pioneer Portfolio.
  3. 'Time to Kill the PHR Term' John Moore, Chilmark Research (2009) In this blog post, Moore advocates replacing the term “personal health record” (PHR) with the label “personal health platform” (PHP). Moore contends that the term “PHR” is outdated and unfavorably rooted in the concept of a record as opposed to a platform for action.
  4. Connecting Americans to their Health Care Final Report Connecting for Health and the Markle Foundation (2004) This report, from the Working Group on Policies for Electronic Information Sharing Between Doctors and Patients, builds on Connecting for Health’s earlier work on personal health records (PHRs) by providing practical recommendations for implementing PHRs and integrating PHRs with existing provider-based electronic medical records (EMRs).
  5. Realizing the Transformative Potential of Personal Health Records Kaiser Permanente Institute for Health Policy (2007) This issue brief summarizes the different types of personal health records (PHRs) by function, value and level of integrated processes, and describes the potential of the “integrated PHR." It concludes with a list of seven strategic areas where policy-makers can advance the vision for integrated PHRs.
  6. Personal Health Records and Electronic Health Records: Navigating the Intersections Kaiser Permanente Institute for Health Policy (2006) The Pioneer Portfolio teamed up with Kaiser Permanente, AHRQ and the American Medical Informatics Association (AMIA) to host a roundtable discussion of how to better integrate personal health records (PHRs) and electronic medical records (EMRs). This issue brief summarizes the findings of the roundtable and outlines next steps for implementing PHRs.
  7. Connecting Americans to Their Health Care Conference Connecting for Health and the Markle Foundation (2006) This conference underscored the extent to which consumers are transforming health care through their use of personal health technologies. Additional resources are available, such as: participant bios, session presentations, the Webcast of the conference and a post on Pioneering Ideas summarizing conference highlights.
  8. 'PHRs: They’re Hot, They’re Sexy, But What Are They, Exactly?' Steve Downs, Pioneering Ideas (2006) This blog post from Pioneering Ideas discusses the evolving (and expanding) definition of a personal health record (PHR). It also explores the relationship between PHRs and patients’ “official” medical records.
  9. Networked Personal Health Records Slide Show Connecting for Health and the Markle Foundation (2007) This slide show illustrates the landscape of health information technology (HIT) and where personal health records (PHRs) fit within that picture. It highlights the common functions and attributes of PHRs, and it discusses consumer perspectives on personal health technologies.
  10. Connecting for Health Program Results Report Robert Wood Johnson Foundation (2008) This grant results report (and the executive summary) summarizes the Pioneer Portfolio’s support of the Markle Foundation and outlines the key findings from the Connecting for Health initiative.

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Chapter 2: Project HealthDesign and the Next Generation of Personal Health Records

  1. Project HealthDesign Robert Wood Johnson Foundation (2006) Launched in 2006, Project HealthDesign is a $10 million national program of the Pioneer Portfolio at the Robert Wood Johnson Foundation. To learn more about the initiative, read about the impetus behind the project in the grantee profile , follow updates from the field, learn about the grantees’ early findings, access information on ethical, legal and social issues, and find additional resources on the program’s Web site.
  2. 'A New Vision for Personal Health Records' Project HealthDesign E-Primer #1 (2008) This e-primer lays out the vision for Project HealthDesign in broad strokes. It challenges patients, policy-makers and application designers to think of personal health records not as static repositories for health data, but as dynamic and highly personalized vehicles for improving one’s health.
  3. "Health In Everyday Living" Project HealthDesign E-Primer #3 (2008) This e-primer chronicles the evolution of patient records from paper records to electronic repositories to dynamic and sophisticated personal health records. It also defines “observations of daily living” and emphasizes the importance of integrating health into everyday life.
  4. The Power of PHRs: Personal Health Records in a Digital Age—Part 2 WGBH Interactive (2008) Part 2 of this four-part podcast series describes personal health records (PHRs) and explores how patients are benefiting from features like e-visits and medication reminders. It also raises questions about patient privacy, medical liability, and new reimbursement structures, the answers to which are integral to the widespread adoption of PHRs.
  5. Project HealthDesign Common Platform Components—Functional Requirements Sujansky and Associates (2008) This technical report by Sujansky and Associates lays out the common functionalities essential to personal health applications like the ones designed by the Project HealthDesign teams. The report outlines technical specifications for four functionalities: calendaring, identity management, medication list management, and recording observations captured in the course of daily living.
  6. 'Project HealthDesign Releases Functional Requirements for PHR 'Building Blocks'' Lygeia Ricciardi, Project HealthDesign blog (2008) Lygeia Ricciardi provides an in-depth look at the Sujansky and Associates report on the common platform and analyzes how a platform approach promotes the objectives of Project HealthDesign.
  7. Project HealthDesign Expo Webcast—Parts 1, 2, 3 and 5 Project HealthDesign (2008) In September 2008, Project HealthDesign and the Pioneer Portfolio hosted an expo highlighting the work to date of the grantee teams. Part 1 of the webcast frames the questions and issues discussed at the conference. Part 2 emphasizes the importance of personal health applications that do more than collect and organize information. Part 3 is a discussion about integrating personal health records into daily living by “moving beyond the PC.” Part 5 is Amy Tenderich’s Keynote, which covers patient centeredness and how people use the Internet to manage their health.
  8. 'Blog Talk Post-Project HealthDesign Event' Susan Promislo, Pioneering Ideas (2008) Promislo surveys the chatter in the blogosphere following the Project HealthDesign Expo.
  9. 'A Few Take-Aways From the Project HealthDesign Conference' Steve Downs, Pioneering Ideas (2008) This post highlights the take-away messages of the Project HealthDesign Expo and crystallizes the thematic underpinnings of the national program—action-oriented, patient-centric, interoperable personal health records that improve patients’ lives.
  10. 'Patient Centered Design: The Potential of User-Centered Design in Personal Health Records' Margarita Morales Rodriguez, Gail Casper and Patricia Flatley Brennan, Journal of American Health Information Management Association (2007) Rodriquez, Casper and Brennan explore the importance of “User-Centered Design,” one of the central themes of Project HealthDesign. The authors conclude that personal health records “will greatly benefit from a design and evaluation approach whose purpose is to ensure an acceptable and useful end result that meets the expectations and needs of the users.”
  11. Final Report on Round One of Project HealthDesign Project HealthDesign (2009) This report summarizes the work of the nine interdisciplinary Project HealthDesign teams and highlights the key insights from the first round of grants.
  12. Perspectives on the Future of PHRs California HealthCare Foundation (2007) This report presents six perspectives on the future of personal health records.

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Chapter 3: Observations of Daily Living

  1. 'Health in Everyday Living' Project HealthDesign E-Primer #3 (2008) This e-primer from Project HealthDesign defines “observations of daily living” and emphasizes the importance of integrating health into everyday life.
  2. 'Tomorrow's New Vital Signs, PHR-Delivered' Susan Promislo, Pioneering Ideas (2008) This blog post highlights the arrival of Project HealthDesign E-Primer #3 and distills its key points about observations of daily living.
  3. 'How Daily Living Can Populate a Personal Health Record' Jane Sarasohn-Kahn, Health Populi (2008) This post discusses Project HealthDesign E-Primer #3 and the potential benefits of integrating observations of daily living (ODLs) into personal health records (PHRs).
  4. Project HealthDesign Expo Webcast—Parts 4 and 5 Project HealthDesign (2008) In September 2008, Project HealthDesign and the Pioneer Portfolio hosted an expo highlighting the work to date of the grantee teams . Part 4 of the webcast features Project HealthDesign grantees and advisers discussing the important role that observations of daily living (ODLs) have to play in personalized medicine. Part 5 is Amy Tenderich’s Keynote, which covers patient centeredness and how people use the Internet to manage their health.
  5. 'The Tip of the Iceberg' Steve Downs, Pioneering Ideas (2007) This post foreshadows the importance of observations of daily living (ODLs) to Project HealthDesign. Downs explores the myriad “patient-sourced” data that constitute ODLs and suggests the need for sophisticated analytical tools to sort and glean meaning from this wealth of data.
  6. 'PHRs: They’re Hot, They’re Sexy, But What Are They, Exactly?' Steve Downs, Pioneering Ideas (2006) This blog post from Pioneering Ideas discusses the evolving (and expanding) definition of a personal health record (PHR). It also explores the relationship between PHRs and patients’ “official” medical records.
  7. Collecting Observations of Daily Living” Lygeia Ricciardi, Project HealthDesign blog (2009) One Project HealthDesign grantee explains why collecting personal data can be burdensome, embarrassing and emotionally fraught. This post presents these challenges, as well as the questions they raise for designing personal health applications and patient-sourced data observation regimens.

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Chapter 4: The Health Information Technology Landscape

  1. The Power of PHRs: Personal Health Records in a Digital Age—Part 3 WGBH Interactive (2008) Part 3 of this four-part podcast series examines the technical challenges facing personal health records—like data standards and interoperability. The expert panel observes that the current incentive structures for patient and physician adoption are lacking and that new protections for data security are necessary to gain the public’s trust. The podcast also introduces Google and Microsoft as important players in defining a new, platform-based business model for personal health technology.
  2. Achieving Electronic Connectivity in Health Care Connecting for Health and the Markle Foundation (2004) This preliminary roadmap from Connecting for Health and the Markle Foundation outlines a strategy for achieving electronic connectivity in health care. Its recommendations are geared toward catalyzing an interconnected and interoperable electronic health information infrastructure.
  3. The Connecting for Health Common Framework: Resources for Implementing Private and Secure Health Information Exchange Connecting for Health and the Markle Foundation (2006) This suite of technical and policy guides for medical professionals provides guidance for secure information exchange among providers from different institutions and clinics. Click here for an overview of the Common Framework.
  4. A Common Framework for Networked Personal Health Information Connecting for Health and the Markle Foundation (2006) This set of technical and policy guides for individual consumers proposes a set of practices that, taken together, encourage appropriate handling of personal health information as it flows to and from personal health records and similar applications or supporting services.
  5. Health Information Technology in the U.S.: Where We Stand George Washington University Medical Center and the Institute for Health Policy at Massachusetts General Hospital (2008) Funded by the Quality/Equality team at the Robert Wood Johnson Foundation, this report outlines the state of health information technology (HIT) in the United States and uncovers some of the barriers to adoption of electronic health records (EHRs) among providers. It considers in particular the growth of EHRs—a common example of HIT—and how their adoption might affect the cost and quality of health care. Click here for the executive summary.
  6. 'The State of Meaningful Use' Mike Painter, Users' Guide to the Health Reform Galaxy (2009) This post from the Robert Wood Johnson Foundation’s health reform blog discusses the progress towards a definition of “meaningful use” of electronic health record technology. Painter praises the work of health care leaders to date, but questions whether enough is being done to connect “meaningful use” to other existing efforts to transform health and health care.
  7. 'Five Provocative Points About Bringing the Benefits of Information Technology to Health Care' Gordon Moore, Harvard Pilgrim Healthcare Inc. (2005) Pioneer Portfolio grantee Gordon Moore examines the role of information technology, and specifically electronic medical records, in the primary care setting. This discussion paper summarizes how information technology might contribute to an optimized model of primary care and transform the delivery of patient care.
  8. 'No Small Change for the Health Information Economy' Kenneth Mandl and Isaac Kohane, New England Journal of Medicine (2009) Kohane and Mandl’s prescription for the health information ecosystem is a platform infrastructure on which third-party developers can build competitive and interchangeable applications.
  9. Computational Technology for Effective Health Care: Immediate Steps and Strategic Directions National Research Council (2009 ) The National Library of Medicine brought together experts in biomedical informatics, computer science and technology, and health care providers to explore how information technology can be applied more effectively to health and health care. These experts argue that merely improving electronic health record systems is not sufficient to drive the kind of change that is truly needed to transform health and health care. This report articulates a vision in which health information technology is used to provide clinicians with patient-centric cognitive support, like diagnostic software and clinical decision-making tools.

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Chapter 5: Personal Health Records and Health Information Technology—Costs, Policies and the Incentives Driving Adoption

  1. Health Information Technology in the U.S.: Information Base for Progress George Washington University Medical Center and the Institute for Health Policy at Massachusetts General Hospital (2006) Funded by the Quality/Equality team at the Robert Wood Johnson Foundation, this report looks at how doctors and hospitals are using information systems to drive improvements in quality. Chapter 5 of the report summarizes the multiple financial, technical and legal barriers that have caused electronic health record adoption rates to remain low. Click here for an executive summary. (This report is the forerunner to the Health Information Technology in the U.S.: Where We Stand report.)
  2. Doctors and Hospitals Slow to Embrace Health Information Technology Robert Wood Johnson Foundation (2006) This video complements the Health Information Technology in the U.S.: Information Base for Progress report. It underscores the findings of the report, including the potential benefits of using electronic health records and the barriers to adoption.
  3. Health Information Technology in the U.S.: Where We Stand George Washington University Medical Center and the Institute for Health Policy at Massachusetts General Hospital (2008) Funded by the Quality/Equality team at the Robert Wood Johnson Foundation, this report outlines the state of health information technology (HIT) in the United States and uncovers some of the barriers to adoption of electronic health records (EHRs) among providers. It considers in particular the growth of EHRs—a common example of HIT—and how their adoption might affect the cost and quality of health care. Chapter 4 of the report contains an analysis of EHR and PHR adoption rates. Chapter 6 addresses privacy as it relates to HIT. (This report builds on the Health Information Technology in the U.S.: Information Base for Progress report.)
  4. 'Physician Adoption of Electronic Health Records Still Extremely Low, But Medicine May Be at a Tipping Point' Robert Wood Johnson Foundation (2008) This press release announces the publication of the results from a national public opinion survey on electronic health records (EHRs). The release discusses the various challenges facing HIT adoption. While the survey itself was funded by the Office of the National Coordinator for Health Information Technology (ONCHIT), the data ONCHIT collected formed the basis for the EHR and PHR adoption analysis conducted by RWJF grantees in the Health Information Technology in the U.S.: Where We Stand report.
  5. Despite Regulatory Changes, Hospitals Cautious in Helping Physicians Purchase Electronic Medical Records Center for Studying Health Systems Change (2008) This issue brief details the changes to the regulatory environment aimed at speeding providers’ adoption of electronic health records. The authors examine why hospitals have been slow to support investments in health information technology, despite the adjustments to the regulatory framework.
  6. The Power of PHRs: Personal Health Records in a Digital Age—Part 2 WGBH Interactive (2008) Part 2 of this four-part podcast series describes personal health records (PHRs) and explores how patients are benefiting from features like e-visits and medication reminders. It also raises questions about patient privacy, medical liability, and new reimbursement structures, the answers to which are integral to the widespread adoption of PHRs.
  7. 'The Challenges and Opportunities for PHRs' Abby Cofsky, Pioneering Ideas (2008) In an interview with the Pioneer blog team, Patricia Flatley Brennan, director of Project HealthDesign, discusses the barriers that need to be addressed in order to advance the program's vision for personal health records (PHRs). Brennan speaks about the incentives at play in the PHR marketplace, privacy policy, and the potential for common platforms to revolutionize the way patients manage their personal health information.
  8. Connecting Americans to Their Health Care Final Report Connecting for Health and the Markle Foundation (2004) This report, from the Working Group on Policies for Electronic Information Sharing Between Doctors and Patients, builds on Connecting for Health’s earlier work on personal health records (PHRs) by providing practical recommendations for implementing PHRs and integrating PHRs with existing provider-based electronic medical records (EMRs). Chapter 6 of the report includes a summary of the factors physicians weigh when considering whether to purchase and implement an electronic records system.
  9. Project HealthDesign Expo Webcast—Part 7 Project HealthDesign (2008) In September 2008, Project HealthDesign and the Pioneer Portfolio hosted an expo highlighting the work to date of the grantee teams. Part 7 of the expo covers the policy implications of personal health records (PHRs). The discussion centers on how reimbursement, liability and privacy policy structures need to change to allow PHRs to realize their transformative potential.
  10. Policy Perspective Resource Center Connecting for Health and the Markle Foundation This section of the Connecting for Health Web site contains issue briefs, blog posts, and congressional testimony that address health information technology policies and challenges.
  11. Ethical, Legal and Social Issues (ESLI) Resource Center Project HealthDesign This unique feature draws together resources that address the ethical, legal and social issues confronting personal health records.

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Chapter 6: Privacy and Personal Health Records

  1. 'The Need to Know: Addressing Concerns About Privacy and Personal Health Records' Project HealthDesign E-Primer #2 (2007) This e-primer examines how consumers regard issues of privacy, security and control of their health data in an age of smarter personal health record systems and asks how policies and norms must shift as a result.
  2. 'Next-Generation PHRs Surface New Questions on Privacy and Ethics' Susan Promislo, Pioneering Ideas (2007) This blog post announces the release of Project HealthDesign E-Primer #2 and outlines its key messages. The post asks whether people be willing to share personal health information in order to gain greater efficiencies in their everyday lives.
  3. Health Information Technology in the United States: Where We Stand George Washington University Medical Center and the Institute for Health Policy at Massachusetts General Hospital (2008) Funded by the Quality/Equality team at the Robert Wood Johnson Foundation, this report outlines the state of health information technology (HIT) in the United States and uncovers some of the barriers to adoption of electronic health records (EHRs) among providers. Chapter 6 of this report provides a concise historical account of privacy law as it relates to health information technology, including a detailed exegesis of the Health Information Portability and Accountability Act (HIPAA).
  4. 'Confusion Over HIPAA Slows PHR Adoption' Lygeia Ricciardi, Project HealthDesign blog (2009) This post discusses the confusion over whether existing privacy laws apply to independent personal health record vendors, like Google Health and Microsoft HealthVault.
  5. The Power of PHRs: Personal Health Records in a Digital Age—Part 2 WGBH Interactive (2008) Part 2 of this four-part podcast series describes personal health records (PHRs) and explores how patients are benefiting from features like e-visits and medication reminders. It also raises questions about patient privacy, medical liability, and new reimbursement structures, the answers to which are integral to the widespread adoption of PHRs.
  6. 'The Challenges and Opportunities for PHRs' Abby Cofsky, Pioneering Ideas (2008) In an interview with the Pioneer Blog team, Patricia Flatley Brennan, director of Project HealthDesign, discusses the barriers that need to be addressed in order to advance the program’s vision for personal health records (PHRs). Brennan speaks about the incentives at play in the PHR marketplace, privacy policy, and the potential for common platforms to revolutionize the way patients manage their personal health information.
  7. Project HealthDesign Expo Webcast—Part 7 Project HealthDesign (2008) In September 2008, Project HealthDesign and the Pioneer Portfolio hosted an expo highlighting the work to-date of the grantee teams. Part 7 of the expo covers the policy implications of personal health records (PHRs). The discussion centers on how reimbursement, liability and privacy policy structures need to change to allow PHRs to realize their transformative potential.
  8. Ethical, Legal and Social Issues (ESLI) Resource Center Project HealthDesign This unique feature draws together resources that address the ethical, legal and social issues confronting personal health records. Many of the resources touch on privacy and the challenges facing PHRs as they relate to secure information exchange.

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Chapter 7: Personal Health Records—Business Models, Open Platforms and the Challenges Ahead

  1. The Power of PHRs: Personal Health Records in a Digital Age—Part 3 WGBH Interactive (2008) Part 3 of this four-part podcast series examines the technical challenges facing personal health records—like data standards and interoperability. The expert panel observes that the current incentive structures for patient and physician adoption are lacking and that new protections for data security are necessary to gain the public’s trust. The podcast also introduces Google and Microsoft as important players in defining a new, platform-based business model for personal health technology.
  2. The Power of PHRs: Personal Health Records in a Digital AgePart 4 WGBH Interactive (2008) Part 4 of this four-part podcast series is a moderated discussion about the economic incentives driving the business case for personal health records (PHRs). The expert panelists address PHR profitability and sustainability, consumer preferences, patient trust, and a host of other challenges facing PHRs. The opinions expressed in this podcast reflect the growing consensus about a new PHR ecosystem in which open platforms simultaneously aggregate data that are scattered across health institutions and stimulate the development of innovative personal health applications.
  3. 'No Small Change for the Health Information Economy' Isaac Kohane and Kenneth Mandl, New England Journal of Medicine (2009) Kohane and Mandl’s prescription for the health information ecosystem is a platform infrastructure on which third-party developers can build competitive and interchangeable applications.
  4. “Siloed, Tethered PHRs Are a Dead-End” John Moore, Chilmark Research (2009) In this post from Chilmark Research, Moore responds to three articles from the March 2009 issue of the New England Journal of Medicine. Moore responds to the concept of an open platform for HIT advanced by Kohane and Mandl. He also offers several counter arguments to an article by Paul Tang, who chairs the national advisory committee for Project HealthDesign, in which Tang argues that physician-hosted (“tethered”) PHRs provide the greatest value to patients.
  5. An App Store for Your EHR? Why Not?” Steve Downs, Pioneering Ideas (2009) Downs responds to the New England Journal of Medicine perspective by Isaac Kohane and Kenneth Mandl articulating a vision for a health information infrastructure that separates the platform from the functionality of the applications.
  6. "Catalyzing the App Store for EHRs" Steve Downs and John Lumpkin, Pioneering Ideas (2009) In this post, Downs and Lumpkin recommend several strategies for how best to catalyze the open-platform approach to HIT advanced by Isaac Kohane and Kenneth Mandl. Among their suggestions is a venture fund for platform providers, a venture fund for application developers, and a prize to stimulate competition among aspiring PHR platform vendors.
  7. Project HealthDesign Common Platform Components—Functional Requirements Sujansky and Associates (2008) This technical report by Sujansky and Associates lays out the common functionalities essential to personal health applications like the ones designed by the Project HealthDesign teams. The report outlines technical specifications for four functionalities: calendaring, identity management, medication list management, and recording observations captured in the course of daily living.
  8. Project HealthDesign Releases Functional Requirements for PHR ‘Building Blocks’” Lygeia Ricciardi, Project HealthDesign blog ( 2008) Lygeia Ricciardi provides an in-depth look at the Sujansky and Associates report on the common platform and analyzes how a platform approach promotes the objectives of Project HealthDesign.
  9. The Challenges and Opportunities for PHRs” Abby Cofsky, Pioneering Ideas (2008) In an interview with the Pioneer blog team, Patricia Flatley Brennan, director of Project HealthDesign, discusses the barriers that need to be addressed in order to advance the program's vision for personal health records (PHRs). Brennan speaks about the incentives at play in the PHR marketplace, privacy policy, and the potential for common platforms to revolutionize the way patients manage their personal health information.
  10. Patti Brennan: Looking Ahead” Abby Cofsky, Pioneering Ideas (2008) In this blog post, Patricia Flatley Brennan, director of Project HealthDesign, considers other players within the ecosystem that could be involved in the next phase of personal health record development.
  11. Attitudes of Americans Regarding PHRs and Nationwide Electronic Health Information Exchange Markle Foundation (2005) This public opinion survey found that while Americans are generally supportive of online personal health records (PHRs), issues of trust and privacy remain essential to PHR adoption. The results from this survey were presented at the Connecting Americans to their Health Care (2005) national conference, which was jointly hosted by AHRQ, the Robert Wood Johnson Foundation and the Markle Foundation. Connecting for Health also issued a press release highlighting the survey results.
  12. Project HealthDesign Expo Webcast—Parts 6, 7, 8 and 9 Project HealthDesign (2008) In September 2008, Project HealthDesign and the Pioneer Portfolio hosted an expo highlighting the work to-date of the grantee teams. Part 6 of the expo gives an overview of the Project HealthDesign common platform, and it stresses the importance of third-party access to open-source platforms. Part 7 covers the policy implications of personal health records (PHRs). Part 8 gives a health systems perspective on personal health records. Part 9 provides an industry perspective on PHRs’ future trajectory.

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