Discussions to date have stressed that health care services at the start of the 21st century are delivered not within a system but by a disparate and rapidly changing array of institutions and relationships. In terms of information, the most important criticism is that too much of the data now collected is useful only nationally, or only for paying for health services. When the data are used for other purposes, they often produce misleading information.
Business trends in health care are toward capitation,(15) consolidation, and reliance on market mechanisms¾with important implications for what information is collected, and how. In clinical care, two major trends are the growing interest in evidence-based medicine and the growing use of expensive, high-tech solutions to medical problems. Other trends are the provision of care outside traditional inpatient settings and pressures away from specialty care and toward primary care.
There is growing attention in the U.S. to outcomes and quality issues¾at least partly in response to payer demand, public policy, and media attention. Yet little of the information that is currently collected is useful for these issues. For example, data on hospitalizations is collected completely separately from data collected in other health care settings or by surveys, and these various sources cannot be linked to provide a cogent picture of health needs and how they are being met.
In terms of health care seeking by consumers, a significant number of Americans are choosing alternative forms of treatment, some of unproven usefulness and possible harm. Consumers also are seeking information on the Web, engaging in self-care, and participating in self-help/mutual aid groups.
In addition to those noted above, knowledge gaps related to health services delivery lie in the following areas, among others:
- The relationship between the population’s health and relative investments in primary care and ambulatory specialty care
- The effectiveness for the population’s health of specific medical interventions purported to improve health (Examples: What are the implications for survival of radical prostatectomy compared to brachytherapy? How much of the explosion in new and expensive drugs really improves people’s health and well-being? Is the increasing cost of health insurance compromising health? What types of care produce the best results for the health of the population?)
- Information to determine whether the demonstrated benefits of surgeries, drug treatments, and putative quality of life enhancements extend to all people
- The effectiveness of investments in preventive services versus curative services
- Information about the types of services available to local populations and the balance among them
- The impact of adverse effects of medical care on the health of the population
- Data on alternative therapies (e.g., procedures, providers, consumer care-seeking)
The fragmentation of health care delivery today makes it essential to have integrated, effective information systems in order to understand the health care system and how people fare in it. Without this, we lack a composite picture of the preventive and treatment interventions given to individuals or to communities¾making it impossible to evaluate the effectiveness of health services. Tying together information on communities, events, people, providers, and health outcomes from different sources can help create more integrated services and improve efficiency and quality.