- 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.
A. A General Role and Need for HHS
Private sector actors and states alone cannot address the concerns we identified. The private sector lacks the potential for generating legislative authority to require compliance that is inherent in government. Also--and perhaps of greater relevance--the private sector does not perceive itself to have the resources or scope of influence over components and players in the health care system required to collect needed information. States have an important role to play, but resources also limit their activity. Further, the increasing consolidation of the health system means that individual state initiatives cannot address user needs which cross state lines. For example, these include national purchasers that want consistent information for health plans in diverse states or consolidated health systems spanning state lines.
There are a number of reasons for federal leadership in addressing these issues. First, as highlighted in Chapter III.A, the federal government is a major funder of information collection activity on the supply side of the system. While federal spending may here may pale in contrast to the spending on population-based surveys, the federal government remains a major funder of information systems on health care providers and their services. HHS has a fiduciary responsibility to the tax payer and Congress to assure that its efforts are well spent and focused on issues of greatest priority. Second, the current decentralization of authority and involvement in data collection on the health system, complicates the task of addressing data gaps which span multiple governmental jurisdictions and the defacto scope of influence of diverse private sector constituencies. This creates a need for leadership that is well-suited to the federal government and its potential to collaborate on convening multiple parties. And third, the ERISA pre-emption means that on key issues involving health insurance/health plans, states are often handicapped by their inability to bring in self-funded plans. HHS involvement not only can help bridge this gap but also can encourage a focus on health policy needs when insurance departments and labor address issues of health insurance information.
B. Structural Data Gaps: Suggestions for Action
There is a need for much more information that could be used to describe the health system both in terms of function and in how the relationships of its components are evolving in an era of consolidation, integration, and managed care. The needs in this area correspond to the resource and structural issues we discussed, and to the related concerns about the ability to describe what these changes in functional relationships mean for the process of health care delivery. The perceived need for this kind of information seems relatively recent, and there is both little historical work on which to build and major barriers to progress. For example, some information needs are so “simple” as an inability to even decide which entities should be defined for data capture when both these entities and their linkages are unstable, shifting, and so little documented in the marketplace.
This set of needs is probably the most complicated that HHS will address because work in this area is relatively undeveloped. We suggest that HHS may find it useful to the many focus on four gaps that weaken stakeholders’ ability to understand how the health care system is structured today and how care delivery works.
C. Process and Outcome Data Gaps: Suggestions for Action
There is a need for better information on system performance and the outputs of care, whether expressed in process or outcome measures, or measured at different levels of aggregation. These include difficulty of obtaining transaction data outside a fee-for-service environment, or in a central location anywhere for the under 65 population, the lack of standardization, and the difficulty of associating performance with specific expenditures or accountable parties.
Unlike the structural data gaps discussed above, the needs have been recognized for some time, and there is ongoing activity that promises to address some of them. A clear illustration is the current extensive work being undertaken by HHS and others to implement the HIPAA of 1996. Yet it is also clear from a review of the historical record that serious barriers have limited past efforts to improve and standardize transaction data to support analysis, and also other features of current systems. Overcoming these gaps is key to the development of improved performance measures and outcome indicators. While efforts around the HIPAA are important opportunities for standardization, their impact will be constrained if data to standardize do not exist or it is not clear what structure of the health care system to code and how.
D. Strategic and Process Issues That May Impede or Enable Efforts
Aside from the substance of the work that is needed, there are certain strategic or procedural constraints that may impede progress. The following three suggestions could enhance the success of efforts and the availability of information.
- Suggestion #8. In today’s competitive climate, HHS would be wise not to necessarily assume that information available under voluntary private efforts will continue to be available. We were struck by the fact that several groups had eliminated efforts to collect provider data. Historically, provider groups may have stopped collecting data when market changes influenced revenue or when sensitivities of members changed. HHS may want to commission a study to assess where it is dependent on such information, how important the information is, whether there is a need to develop or consider alternatives, or whether an independent capacity should be viewed as important.
- Suggestion #9. In today’s environment, public-private partnerships to collect data -- such as those developed in states like Minnesota -- are likely to be increasingly important to successful data initiatives. This assumption is incorporated into the suggestions made here. In light of the emerging need for such partnerships, HHS may wish to commission a review of both the operational issues these partnerships create and the experience in states or elsewhere that might inform this effort.
- Suggestion #10. HHS should assume that funding will be a constraint for all stakeholders concerned with the issues discussed here. The agency should consider convening a “summit” of public and foundation funders to discuss cooperative strategies that might finance data collection efforts. This is particularly critical, as historical experience suggests that states are severely limited both by the financing available for new data systems and by the resources and authority to attract and support technically proficient staff. Our study suggests that competition also may be reducing resources in the private sector. While more may be invested in data collection, there may be less willingness to engage in data collection for cooperative, as opposed to competitive, concerns. This summit can be a forum for considering not only what partnerships and innovations may be feasible but also the terms on which they may be feasible.
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.