Connecting for Health - Frequently Asked Questions

What is the purpose of the Connecting for Health Collaborative?

The purpose of the Collaborative is to catalyze specific actions that will rapidly clear the way for an interconnected, electronic National Health Information Infrastructure. The Collaborative will focus on three key areas:

Accelerating adoption of national clinical data standards in order to facilitate interoperability.
Solving the security and privacy issues needed to enable use of personal health information across plans and providers.
Identifying key steps for meeting consumer needs arising from the advent of an interconnected, electronic healthcare system.

Why is the Markle Foundation involved in this effort?

The mission of the Markle Foundation is to accelerate the use of information systems to address critical public needs. That is why the Foundation is acting as convener and funder of the Collaborative. We believe Markle's initial investment of two million dollars, and our active involvement in leadership of the Collaborative, will enable participants to reach realistic, implementable, patient-oriented solutions.

What is a clinical data standard?

A clinical data standard enables patient-oriented information to be easily sent, received and understood by different users of that information. Without a standardized vocabulary, clinical terms that have one meaning to one group of users may mean something very different - or mean nothing at all - after being filtered through another user's information system. So, for example, clinical standards are needed to govern the content and coding of data related to the patient physical exam and history, laboratory results, outpatient prescriptions, etc.

Why are standards important?

The absence of standards has given rise to an array of clinical information systems that cannot efficiently communicate with each other. As a result:

Clinicians are providing care without knowing what has been done to the patient previously, resulting in redundant, costly and sometimes dangerous treatments.
Patients who wish to collaborate with their doctors in managing their healthcare have inadequate information, resulting in lower quality care and higher costs.
Clinicians are often unable to obtain usable information that would enable them to both avoid preventable mistakes - safe care - and apply research breakthroughs to their patients - evidence-based care.
Adoption of standards will help clinicians better meet the needs of patients while bolstering the ability to measure and improve outcomes.

Why makes the need for standards more compelling today?

First and foremost, the events of 9/11 and its aftermath have painfully highlighted the fragmentation of health care information. Public health has long been constrained by its reliance on primarily paper based reporting from health care providers. However, as the nation struggled with the threat of broad-scale bioterrorism, it became evident that we did not have the necessary national capacity to collect and analyze critical health information. A National Health Information Infrastructure would dramatically improve the capacity to monitor and detect disease outbreaks. As a result, the political will to support change, absent in the past, has grown considerably. Second, there is growing pressure to control spiraling health care costs while maintaining or improving quality of care. The same inability to collect and share information that was seen on a national basis post 9/11 also affects individual patients at the point of care. Standards would both enable both significant financial savings and safer, more evidence-based care. Finally, technological barriers to interoperability are disappearing as computer advances allow us to affordability interconnect a geographically dispersed set of participants. Meanwhile, adoption of standards will provide the developers of new technologies and pharmaceuticals a consistent data framework that will reduce development time and costs and further speed innovation. In response to all of the above factors, the Collaborative plans on reaching agreement on clinical health information standards by June 1, 2003 - nine months after its first meeting.

Will the Collaborative develop its own standards?

No. The members of the Collaborative will establish multi-stakeholder consensus on the key steps that need to be taken to enable widespread adoption and use of existing standards. For example, we may recommend the incorporation of additional data elements. We do not propose to supersede the current standards development organizations and will work with them to encourage adoption of our recommendations.

What is the relationship between the Collaborative's work and the requirements already mandated by the Health Insurance Portability and Accountability Act (HIPAA)?

The Collaborative fully supports HIPAA. HIPAA provides both standards for the electronic interchange of administrative data and rules for privacy and security. The goals of this project include development of consensus on and acceleration of the adoption of clinical standards as well as identification and communication of best practices related to privacy and security.

What is the Collaborative's relationship with other standardization initiatives?

The work of the eHealthInitiative (eHI) with the federal Centers for Disease Control and Prevention served as a launchpad for this initiative. Certain components of that work will be folded into this initiative, while others will continue within the separate collaborative run by the eHI. In addition, eHI, including its chief executive officer, Janet Marchibroda, is providing some of staffing for the Connecting for Health work, although the two efforts remain independent.
The federal government's Consolidated Healthcare Informatics initiative is identifying common data standards across the federal government. Our work is complementary, in that we focus on the intersection of the public sector with the private sector. In addition, several CHI members sit on our Steering Group.
The American Hospital Association recently launched the National Alliance for Health Information Technology. A number of health systems are involved with the Collaborative, and we look forward to working with the AHA to leverage our work.

What happens once standards are agreed upon?

The Markle Foundations will continue working with government, healthcare and industry leaders to ensure that these standards are implemented to the benefit of the ultimate health consumer - the patient.