Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. A. Rationale For This Work


It could be argued that there is greater instability and change in our health care system today than at any other time in the recent past. The emphasis on market competition is strong among both private and public purchasers. Managed care has become the dominant arrangement both for delivering and for financing care for privately insured individuals. It is also a growing presence in public programs like Medicaid and Medicare. At the same time, health care providers are consolidating more and more as they affiliate or merge with one another and accept greater risk and/or organizational responsibility for the delivery of care as a provider system affiliated with managed care plans. These trends, along with current budgetary constraints and concerns, are generating intense interest in the health system. Answering the vast range of questions now prompting scrutiny of the health system will require solid information about new and existing system components, the changing relationships among them, and the effects of these changes on institutions and people.

Although the Department of Health and Human Services (HHS) and other federal agencies have historically served as central repositories for population-based information nationwide, especially information from household surveys, HHS devotes many fewer resources to collecting information on health insurance plans and providers--the “supply” side of the system. Although efforts by the states and national entities like the American Medical Association (AMA) and American Hospital Association (AHA) extensively complement federal efforts to collect supply side information, this decentralized structure makes it more difficult to expand the content of supply side information and make it more consistent so that it better serves current needs. By “supply side”, we refer here to information on suppliers of health care services including both institutional and individual providers and practitioners, as well as suppliers of health insurance and coverage. The focus is on information produced within the structure, contrasted with the self-reported information typically obtained in population based surveys (i.e. the demand side).

As the supply side of the health care industry evolves and information on this segment of the industry becomes more important, because of market place changes federal policymakers must consider how these developments affect information needs and how to meet these needs effectively. In addition to its direct role in producing information, HHS plays an important leadership role in the effort to identify perceived gaps in current data and other information collection efforts and to address issues common to information consumers and producers. This role may become increasingly important since changes in the health care market are expanding demand for health system information not just among policymakers but also in the private sector where timely insight on market change and performance is critical to strategic and optimal success.

The purpose of this project is to develop insight into how information needs associated with a changing health system are perceived by a wide variety of user groups and constituencies including those representing providers, insurers, purchasers, consumers and government at various levels. The project also identifies specific activities by a subset of those groups undertaking response to new and evolving health system information needs. With a few exceptions documented in the literature, we focus solely on non-HHS actor perceptions about information needs and their efforts to address these. Insight into these activities will complement HHS’s knowledge of its internal and other federal information needs and activities. Together, both sets of information will help HHS policymakers set priorities and develop appropriate collaborative strategies for addressing important gaps that exist or may be arising.

This project is one of several steps HHS is taking to assess the needs for better information on the health care system. The work here, which addresses information needs and gaps relating to the supply side of the health care system, is intended to support HHS’s Data Council and to complement other activities in the private sector and in other government bodies. The work also complements HHS’s recent survey integration initiative, which focused largely on population-based surveys, that is, the “demand side”. Although the supply side encompasses a range of interests, the focus here is information relevant to the health care system broadly. That is, we focus less on needs for detailed information on individual sectors of the system (e.g., specific kinds of providers, specific federal programs) than on needs for information that cross these areas and provide insight into the system more generally. For example, information pertaining to new business and structural affiliations of providers was an expressed need by various interest groups, including insurers, purchasers, consumers, researchers, and policymakers. In a few areas (e.g., purchaser-related information, expenditures), the needs are not clearly supply- or demand-related. However, we include these areas because they are both frequently overlooked and seen as very important by many of those with whom we spoke. In our view, it is valuable to include them.

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