Connecting for Health recommends specific actions for bringing health care into the Information Age

New York 14 July 2004As momentum grows for bringing the outdated, paper-based health care system into the Information Age, Connecting for Health, a public-private collaborative, has released a timely report that details specific actions the public and private sectors can take to accelerate the adoption of information technology in health care. Connecting for Health's "Preliminary Roadmap for Achieving Electronic Connectivity in Health Care" calls for all stakeholders from across the health care industry to work together to build a health information infrastructure that would improve patient care, reduce medical error and lower costs while protecting patient privacy.

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The Preliminary Roadmap's key recommendations fall into three broad categories:

  1. Creating a Technical Framework for Connectivity: The creation of a non-proprietary "network of networks" is essential to support the rapid acceleration of electronic connectivity that will enable the flow of information to support patient care. The network should be based on a "Common Framework". The network should use a decentralized, federated architecture, that is based on standards, safeguards patient privacy and is built incrementally, without the use of a National Health ID or a centralized database of records.
  2. Addressing Financial Barriers: The development of financial and other incentives and related processes to promote improvements in health care quality through the adoption of clinical applications and information exchange based on standards.
  3. Engaging the American Public: Informing the public with a consistent set of messages to be used by government, health care, and consumer leaders to promote the benefits of electronic connectivity and to encourage patients and consumers to access their own health information.

In order to support implementation of its recommendations, Connecting for Health will release a final version of the Roadmap and detailed reports by individual Working Groups that contributed to it by September. The final Roadmap will provide additional detailed recommendations for action and commitments from Connecting for Health's Steering Group members, who include some of the foremost health care leaders in the public and private sectors.

"The only way to overcome the barriers to electronic connectivity in health care is for the public and private sectors to work collaboratively to build an infrastructure that will improve health care for patients and their families", stated Carol Diamond, MD, MPH, managing director at the Markle Foundation and chair of Connecting for Health. "Connecting for Health developed the Preliminary Roadmap to achieve broad agreement on a set of immediate actions that can be taken by all health care stakeholders over the next several years to help accelerate health care's transformation to the Information Age."

"Connecting for Health is pulling together the right people, giving them an action plan in order to efficiently create a decentralized and standards-based network that's good for health care and patients", stated John Lumpkin, MD, MPH, senior vice president of the Robert Wood Johnson Foundation, chair of the National Committee for Vital and Health Statistics and executive vice chair of Connecting for Health. A recent study from the Center for Information Technology Leadership estimates that the creation of a standards-based interoperable health information infrastructure could save the nation $86,8 billion annually after full implementation.

Connecting for Health is an unprecedented collaborative of over 100 public and private stakeholders designed to address the barriers to electronic connectivity in health care. It is operated by the Markle Foundation and receives additional support from the Robert Wood Johnson Foundation. Since Connecting for Health began its work in 2002, momentum for electronic connectivity in heath care has accelerated rapidly, culminating in the president's recent call for electronic health records for all Americans within ten years.

"There is a great amount of work being done throughout the country to support the development of electronic medical records, however, the health care system will remain highly fragmented and we will never fully realize the benefits that IT can bring to health care unless the systems and applications being developed can share information with each other", stated Zoe Baird, president of the Markle Foundation. "To address this problem, Connecting for Health has come up with a set of groundbreaking recommendations that set the stage for development of an electronically connected, patient-centric health care information system."

Connecting for Health's Preliminary Roadmap is being released at a critical time. In addition to President Bush's call for the creation of electronic health records for all Americans within ten years, leaders of both parties have highlighted the importance of IT in health care. Dr. David Brailer, the newly appointed National Health Information Technology Co-ordinator for the Department of Health and Human Services (HHS), will release a report on the Administration's strategic health IT plan at the HHS-sponsored National Health Information Infrastructure 2004: Cornerstones for Electronic Healthcare conference in Washington, D.C.

"We have already begun to see the emergence of private sector activities conducted by Connecting for Health Steering Group members designed to turn our recommendations into reality", stated Janet Marchibroda, chief executive officer of the eHealth Initiative and executive director of Connecting for Health. "We now have an excellent opportunity for the public and private sectors to work together and drive real change in health care."

"The most innovative aspect of Connecting for Health's Preliminary Roadmap is that its recommendations show how to develop a national health infrastructure through the creation of a network of networks which is based on open standards and which can be created without a central database of health records or a National Health ID, both long-time barriers that have prevented bringing the benefits of information technology to the field of health car", stated Dan Garrett, vice president and managing director, Computer Sciences Corporation's Global Health Solutions Group, and executive vice chair of Connecting for Health.

"Previous efforts to achieve the benefits of electronic connectivity in health care have been hampered by the fact there seemed to be no way of electronically linking medical records without jeopardizing privacy", stated Jim Dempsey, executive director of the Center for Democracy and Technology and member of Connecting for Health's Working Group on Accurately Linking Information for Health Care Quality and Safety. "However, recent advances in technology offer solutions to this problem by providing the ability to deliver medical information when and where it is needed, whether by patients themselves or by the clinicians who care for them, without the need for central databases or national ID cards."

In order to maximize trust in the system, Connecting for Health's Preliminary Roadmap recommends a decentralized and federated network approach that leaves decisions regarding the sharing of health information with patients and their health care providers. This approach creates a network of networks connected over the Internet, linked only by directories pointing to the sources of records. The directory system knows where records are kept, but not what information the records contain. The records are stored locally and can be shared electronically if authorized.

The proposed network is designed to be flexible to accommodate the various electronic health record (EHR) and personal health record (PHR) models that are being developed. "Our recommendations limit the need for large scale disruption of services and huge up front capital investments because the network is designed to exploit current methods of institutional and provider record keeping while improving interoperability of existing systems", stated J. Marc Overhage MD, PhD, associate professor of medicine, Indiana University School of Medicine; senior investigator, Regenstrief Institute and co-chair of the Connecting for Health Technical Panel.

To support the incremental approach to development it advocates, the Preliminary Roadmap calls for the immediate creation of a "common framework", a set of common standards, policies and methodologies to enable the secure transport of data to support electronic connectivity across the country. The Preliminary Roadmap calls for a public-private collaborative to test the "common framework" in a reference implementation to be completed with one year.

"A common framework is a critical aspect of making sure that we are able to mobilize and effectively share health information on a large scale", stated Wes Rishel, vice president, Gartner Research and co-chair of the Connecting for Health Technical Panel. "The reference implementation will help leverage interoperability on a broader scale."

Connecting for Health's Preliminary Roadmap includes recommendations designed to realign incentives and tackle the legal and financial risks that providers and hospitals face when making decisions regarding the adoption of IT applications and interoperable systems. The Preliminary Roadmap also includes a set of recommendations regarding data standards, focusing on a "ready set" of standards that are mature and proven.

The Preliminary Roadmap recognizes that widespread adoption of interoperable, standards-based health records and the networks that enable electronic connectivity will not occur without the realignment of financial incentives and recommends a level of incentives that would encourage the adoption of electronic health records. The Connecting for Health Working Group on Financial, Organizational and Legal Sustainability will release later this summer an analysis of funding and other incentives designed to help health care leaders better understand the costs and benefits of accelerating the use of health IT systems.

"Because the peer-reviewed research to date does not yet support a robust business case for the provider adoption of IT, having some qualitative models to help people to think through the business case can be a first step in understanding what it's going to take", stated John Glaser PhD, vice president and chief information officer, Partners HealthCare System and chair of the Connecting for Health Working Group on Legal, Financial and Organizational Issues.

"Due to the scarcity of capital, not a lack of interest, health care providers are hard pressed to make the investments in technology that would allow them to provide better quality, evidence-based care", stated Herb Pardes, president and chief executive officer of New York Presbyterian Hospital and executive vice chair of Connecting for Health. "With an adequate set of investment and incentives, the health care industry will respond."

Some of Connecting for Health's most far-reaching recommendations involve the patient's changing role regarding personal health and health care. Research done for Connecting for Health by the Foundation for Accountability (FACCT) has shown that few Americans understand how much today's inadequate information systems affect the quality of their health care. While Americans express high levels of interest in electronic health records, many believe that such systems are already in place. In fact more than half believe their own doctors are far more "wired" than is actually the case.

Connecting for Health's Preliminary Roadmap addresses this problem by calling for an educational campaign about both the benefits and the current status of electronic connectivity in health care. "Educating patients would empower them to be more effective managers of their own health, better partners in care and more informed advocates of moving the health system towards greater connectivity", stated David Lansky PhD president of FACCT and chair of Connecting for Health's Working Group on Policies for Electronic Information Sharing Between Doctors and Patients.

The Working Group plans to release its final report at this year's National Health Information Infrastructure conference: Cornerstones for Electronic Healthcare on July 21. The report provides further details on the patient empowerment recommendations contained in the Preliminary Roadmap and will also include an analysis of research on the public's attitudes towards Personal Health Records and proposed themes that could be featured in an educational campaign.

Connecting for Health is committed to accelerating actions on a national basis to tackle the technical, financial and policy challenges of bringing health care into the Information Age. Connecting for Health has demonstrated that blending together the knowledge and experience of the public and private sectors can provide a formula for progress, not paralysis. Early in its inception, Connecting for Health convened a remarkable group of government, industry and health care leaders that led the national debate on electronic clinical data standards. The group drove consensus on the adoption of an initial set of standards, developed case studies on privacy and security and helped define the electronic personal health record.

Emerging information and communication technologies possess enormous potential to improve people's lives. The Markle Foundation works to realize this potential by accelerating the use of these technologies to address critical public needs, particularly in the areas of health and national security. The Markle Foundation's overarching goal in the health area is to accelerate the rate at which information technology enables consumers and the health system that supports them to improve health and health care. The Foundation's goal is to ensure that the extraordinary potential of 21st century information technology to improve the health and health care of each citizen is translated into everyday use as quickly and as effectively as possible.

The Robert Wood Johnson Foundation, based in Princeton, New Jersey, is the nation's largest philanthropy devoted exclusively to health and health care. It concentrates its grantmaking in four goal areas: to assure that all Americans have access to quality health care at reasonable cost; to improve the quality of care and support for people with chronic health conditions; to promote healthy communities and lifestyles; and to reduce the personal, social and economic harm caused by substance abuse - tobacco, alcohol and illicit drugs.

A full copy of the "Preliminary Roadmap for Achieving Electronic Connectivity in Healthcare" can be found at the Connecting for Health Web site. More information on Connecting for Health is available in the VMW February 2004 article Connecting for Health creates incremental roadmap for achieving electronic connectivity in health care. Please, also consult this VMW issue's article Funding underway for public private-sector collaboration on community electronic health information exchange


Leslie Versweyveld

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