Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. V. Implications for HHS and Priority Efforts



  • Private sector stakeholders and states alone cannot address fully the concerns we identified. Private sector actors are unable to mobilize sufficient resources and lack influence over components of the system to gather needed information. States can play an important role but they too are resource-constrained. In addition, the increasing consolidation of the health system means that individual state initiatives will fail to address some needs, for example, the interests of purchasers that include multiple states or provider/insurance systems crossing state lines.
  • We conclude that there is an important federal role in working with the private sector and states to address the information needs created by a rapidly changing health care system. A key contribution of the federal government is to provide a leadership and convening function. We make 10 concrete suggestions for actions that the federal government can take in collaboration with the private sector and states to address priority data gaps and information needs we identified.

Although the information needs of users are diverse, the similarities in these needs and in perceived gaps in information is striking. There is a perceived lack of information on the internal structure and operations of the health system as it becomes more integrated and complex. There also are concerns over the fact that the ability to measure performance and outcomes for the system as a whole or for its components is seriously limited. It is clear that the stakeholders we interviewed perceive that information on the supply side of the system is very important, even as ironically, the same forces that are creating needs for information are also sometimes limiting the resources and willingness of the private sector to provide such data. What is less apparent is how HHS alone or with others might address these gaps. Also somewhat elusive are the reasons for certain persistent data limitations despite respected efforts to develop consensus on how to address them.

In this concluding section, we consider what our findings suggest in terms of priorities that HHS may want to consider as it moves to address the issue of information needs in a changing health care environment. We discuss first the issue of an appropriate federal role and then make specific suggestions in three areas.

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