Information on outcomes of the health care system have historically been among the least developed. In today’s environment, this kind of information is increasingly valued both by those concerned with assessing the value of care and by those concerned with understanding its costs and distributional implications. Table 5 summarizes questions in each of these areas that were raised in our interviews.
QUESTIONS HIGHLIGHTING DATA GAPS: STAKEHOLDER CONCERNS ON OUTCOMES OF HEALTH CARE DELIVERY
A. Appropriateness of Care and Clinical Outcomes
- Who is controlling the process of care and are the entities doing it doing an appropriate job or are they too restrictive?
- How can we assess changes in performance by distinguishing between effects of changes in medical practice versus access?
- What are the clinical outcomes of care? the risk adjusted outcomes?
- What are the resources that contribute to these outcomes? That is, how much is spent for given outcomes or types of patients or effects?
- How do consumers assess outcomes of care in making decisions, considering appropriateness, cost, perceptions, etc.?
B. Costs of Care
- Is bigger better in terms of the scale of enterprise?
- What resources are devoted to ambulatory care?
- How much is spent on physician care? on provider subgroups?
- To what extent are system savings a one time only savings versus continuing savings? A function of price discounts or real changes in the mix, intensity, or quality of care? Have we now gone beyond the fat to the meat in cutting costs?
C. Population-Based Access and Distribution
- How will we know if people are being squeezed out of the system? For example, what about the homeless? How do we interpret bad debt?
- Can we assume people get needed care once they are insured and affiliated with a provider?
- What is the value (community benefit) of a nonprofit institution or system?
- What is the relationship between managed care and the public health infrastructure?
1. Appropriateness of Care and Clinical Outcomes
A key set of outcomes-related concerns has to do with how to interpret practice. For example, is a C-section rate too high or too low when it falls or is below average? Some standard for comparison or form of analysis is needed to interpret change. For example, if care processes are subject to strict clinical and utilization management oversight is this appropriate or too restrictive? That is, what is the relationship between care process and outcome? When is medical practice becoming more appropriate of efficient, and when is needed access being denied? Change threatens historical expectations and established practice. Each stakeholder is affected and these effects influence funding streams. Sorting out efficiency from eroding quality becomes critical to a public policy debate involving all stakeholders and a substantial portion of the Gross Domestic Product. Without better and more comprehensive measures of appropriate care and cost-effective care, it will be difficult to address these questions and to separate out individual interests from broader public policy concerns.
Just having outcome information is another concern. What are the outcomes and how much does each cost? How can they be compared on a risk-adjusted basis so health plans or providers can be equitably assessed relative to others? What outcomes do consumers value, and how can this information be fed into decision-making? Again, consistent and flexible transactions/encounter level data on services is needed to support such studies, and the data have to include, if they are to be useful, those population- and provider-based variables needed for adjustment or manipulation.
2. Costs of Care
There is considerable interest in understanding cost trends, particularly with the shift toward managed care and more ambulatory based delivery using competitive models. Current spending categories provide limited insight on key questions. For example, consolidation is occurring with managed care, but existing systems provide only limited information that can be used to assess whether bigger scale is more efficient. Because spending data has been captured by setting rather than service, there are considerable barriers to assessing the extent of change. The development of capitated systems will make these gaps even larger to the extent that it leads to an erosion of data previously collected centrally to support fee-for-service billing. For example, if one wants to estimate resources devoted to ambulatory care, the fact that resources for hospital outpatient services are included in total hospital spending is a key gap in creating estimates of ambulatory spending. Capitated arrangements may make it more difficult to isolate spending on physicians, an issue of concern to those representing physicians, interested in how much is spent for their services. More generally, there is limited information that could be used to assess the effects of managed care on costs and how this may change over time, since neither costs nor characteristics of managed care are captured on any consistent, comprehensive, or timely basis. While this is a public policy issue, it is also of great concern to both providers or health plans with a stake in particular approaches, and to purchasers who want to “buy right.”
3. Population-Based Information on Access and Distribution
The shifts in the system are generating needs for population-based information about access and distribution. A key concern of a number of groups and individuals we interviewed involves whether one could be confident that existing information would show whether individuals are being squeezed out of the health system. Historically, hospital data on bad debt have been one marker of this event, but what if providers see fewer of such people in a competitive market? Similarly, insurance coverage has often been used as a proxy for potential access, but can we assume people get the care they need once they are insured and affiliated with a provider? What are the effects of differential cost sharing at point of service? How can one assess whether needed care is obtained when it is not clear what care people need? For example, with the growth of consolidation and competition, how can we assess the value of a nonprofit institution or determine the relationship between managed care and the public health infrastructure and how this affects community health? All of these are issues poorly captured in existing data.