Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. Extent to Which Gaps are Being Addressed


Through our interviews, we identified a number of efforts initiated in response to concerns about information needs associated with today’s evolving marketplace and the data gaps that exist. Many of these are modifications in or expansion to ongoing data collection by associations to develop
information needed by their members. Other efforts take the form of independent research funded by states, foundations and other parties to fill the gaps. The 11 efforts selected by HHS for the second phase of our project include ongoing national data collection activities by the American Hospital
Association, American Medical Association, American Association of Health Plans, American Association of Homes and Services for the Aging, Association of American Medical Colleges, and National Committee on Quality Assurance, along with selected state and foundation funded efforts.

Table S.2 summarizes the focus of and impetus for the 11 efforts we studied in the second phase of our work and describes their weaknesses. Sponsors of these efforts perceive them to reflect attempts to respond to the priority data gaps they perceive. But they also view these efforts be relatively limited
compared with the needs. Limits on the players’ authority and resources restrict the amount of information that can be collected and who will provide it. Other barriers to better information include a lack of consistency in definitions used by reporting units and limitations in the willingness to supply
information in a highly competitive and demanding marketplace. At least three national associations have recently been forced to make some cuts in their data collection activities in response to budgetary constraints or marketplace concerns, an irony given the heightened demand they perceive for information.


Insights into These Topics for HHS

Despite the diversity of the user community, we found a striking similarity in many of the perceived needs and information gaps. These include considerable shortcomings in the information available on the internal structure and operational process of the health system as it becomes more integrated and complex. There also are concerns about how well performance and outcomes of the system can be measured, either as a whole or for its components. It is clear that stakeholders we interviewed perceive that information on the supply side of the system is very important. Yet in today’s environment, there are ironically growing fiscal and proprietary barriers that limit data collection.

A General Role and Need for HHS. Based on the information we obtained, we conclude that private sector stakeholders and states alone cannot address the concerns we identified. In the perception of most of those we spoke with, the private sector does not have the legislative authority inherent in government to require compliance nor the scope of influence needed to capture information that individual constituencies feel they need on the health system and its increasingly complicated organizational arrangements. States are limited both by resources and by the increasing consolidation of the system that limits the utility of state-based information in a context of national purchasing or managed care operations. We conclude the federal government has an important role to play in collaboration with others to address the issues we identified. In particular, the federal government can provide leadership to support collaborative efforts to address problems ill-suited for decentralized action.




  Impetus/Focus Perceived Limitations of Effortsa
  Structures &
Linkages Among
Health System
Process and
Outcomes Lack of Standard
Definitions For Data
Willingness to
Provide Data
Timeliness Cost
National On-Going Efforts
Other National Efforts
Other More-focused Efforts

Source: MPR Analysis

a The absence of a check does not mean this was not a problem since responses were obtained in an open discussion and some features may not have been mentioned.

The report includes 10 suggestions about what HHS could do to address, in collaboration with others, the key gaps we identified through our work. These suggestions are organized into three main categories.

Addressing Data Gaps on the Structure of Care. The first set of suggestions focus on better information on structure and functional linkages within the health system and their effects on the process of health care delivery. We view these needs as critical and also the most complicated HHS will face because work in this area is relatively undeveloped. We identify four priority areas for attention and suggest some ways of  proceeding:

  • In collaboration with the NAIC and DOL, HHS should assess current activity focused on developing more consistent and complete census data on health insurance and managed care plans, with a focus on encouraging attention to needs and issues viewed as important by the health policy and research community as this activity unfolds.
  • In collaboration with national provider and health plan organizations and associated researchers in and out of government, HHS should determine how to capture meaningful information about linkages across entities in the health system as they form more integrated systems under managed care.
  • Review HHS activity to collect provider information across diverse agencies with the objective of deciding change might be desirable in light of market-place change. These are generating growing interest in understanding the linkages across components of the system as well as the components themselves.
  • Review current activity to enhance information about purchaser activity in light of needs identified through this project to determine whether current activity is sufficient to meet the needs expressed and if not, what next steps might be desirable.

Addressing Data Gaps on the Process and Outcomes of Care. Our second set of suggestions
focus on better information on system operational performance and outcomes. There is considerably
more work underway in this area than the previous one both at HHS and elsewhere: The Health
Insurance Portability and Accountability Act, in particular, has generated a host of collaborative
activity focused on standards for transaction level information. However, while these efforts may
promote standardization, they are constrained if data to standardize do not exist. They also may be
limited by inherent weaknesses in understanding the structure of the health care system. For example,
what is the universe of entities that should be coded and how? We make three suggestions for
activities that could prove useful in hastening the speed of change.

  • To learn from previous experience, we suggest HHS commission an independent study of the key reasons some high profile prior reports such as those by NCHS committees or IOM have spurred only limited improvements in information systems. The focus should be a practical lessons for the future about how to structure feasible and valuable recommendations and implementation strategies.
  • Consult private-sector national associations to determine whether they perceived federal help could be useful such as, for example, in moving forward with NCQA’s recently issued “Roadmap” report on health data systems. 
  • Similarly, consult with representatives of states, payers, purchasers and others to identify barriers to any additional areas where federal help would be useful. Facilitate communication between these entities and provider and health plan entities on areas of mutual interest in improving performance measures, including developing condition-specific measures on a population basis, tracking care across settings and associating outcomes with costs.

Anticipating Strategic and Other Operational Barriers to Success. Our third and final set of suggestions focus on key strategic or procedural issues that may be impediments to improving information. Two suggestions are:

  • HHS may want to assess where it is dependent on information obtained voluntarily through private sector entities and any risks that this may generate in a competitive marketplace.
  • Because public-private partnerships appear an increasingly attractive vehicle for mounting successful data initiatives in today’s environment, HHS may want to review the operational issues for government entities joining such arrangements.

The third and final suggestion focuses on the issue of funding as a constraint on data improvements. Our work shows that the funding limitations are a barrier pointed out by all stakeholders interested in enhancing data, particularly in today’s environment. In today’s federal budget climate, it is also an issue for HHS. To identify how best to enhance data given available resources, we suggest that HHS may want to consider convening a “summit” of public and foundation funders to discuss cooperative strategies that might be employed.

In sum, the information needs associated with the changing health system are extensive. Gaps in available information are widely perceived by stakeholders as impeding their ability to effectively serve their constituents. While some activity is underway to improve data and better address gaps, these activities are viewed by their sponsors as severely limited. The federal government can play an important role with stakeholders to better address the current and anticipated future information needs. While data improvement is a long term process and there are many challenges to be faced, stakeholder perceptions suggest some important areas where concrete steps can immediately be taken to begin this process.

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