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The Outcome of Outcomes Research at AHCPR: References


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Appendix 1: Survey of COER-Funded Principal Investigators: Summary

As one of the first activities in this OER critique, we felt it would be useful to have a systematic review of what had been produced so far with Agency funding. Therefore, a mailed survey was sent to all principal investigators (PIs) funded by COER between 1989 and 1997, asking them to describe their most important work. The survey was sent to all PIs who had participated in Patient Outcomes Research Teams, Minority Research Centers, Pharmaceutical Outcomes Therapy studies, and other recipients of COER funding. This letter asked PIs to "identify the most salient findings" from each of their outcomes/effectiveness research studies. They were asked to provide enough material for up to three slides, and to state findings in "succinct, bullet-point format." No specific criteria were provided to define the "salience" of findings, nor were PIs instructed about the number of findings to be submitted. The objective was to identify whether any common themes could be derived from a large set of research findings identified by PIs as being their most important results.

The survey letter was mailed to 95 PIs. Responses were received from 61 (64 percent). No additional effort was made to solicit information from non-responders.

After reviewing a sample of responses to the survey, we developed a taxonomy for classification of the findings. Eleven categories were identified and defined, which were intended to group findings with common characteristics of methodology or purpose (see categories). The process of defining categories was also informal, but provided a framework for identifying some common features of the findings submitted. An initial set of categories was proposed by one of the reviewers of the survey results, and this set was modified with input from two other project participants.

Once the list of categories was finalized, two physician/health services researchers reviewed the complete set of findings submitted by the PIs. Some PIs chose to list findings from a number of separate studies, while others reported a number of individual findings from a single study. The reviewers assigned findings for each discrete study to up to three different categories.

For the set of important findings submitted by COER-funded PI's, a total of 246 category assignments were made. Table 2 shows the frequency with which study findings were assigned to each category. The largest single category of important findings was "descriptive epidemiology": studies that described patterns of health care conditions or services. For example, one PI reported that the major independent risk factors for chlamydia infection are age less than 30, cervical friability, multiple sexual partners, and African American race. Another study reported the finding that the maximum estimated lost life expectancy for men with prostate cancer and a Gleason score of 5-7 was 4 to 5 years. "Practice variations," another primarily descriptive exercise, was the fifth largest category of findings. These studies generally identified unexplained variations in practice patterns that occurred in different regions, groups of providers, demographic subgroups, or time intervals. For example, one study identified a two-fold variation in the use of electrophysiology studies and implantable cardioverter-defibrillators by gender and race.

Another large group of studies identified as important compared the outcomes (clinical, quality of life, and/or economic) associated with different clinical interventions. Unlike the categories described above, these studies attempted to compare the outcomes associated with two or more alternative treatment strategies. In the majority of cases, these findings were derived from retrospective analysis of administrative databases. A smaller portion of these studies were prospective observational studies. Comparative effectiveness studies were able to associate various patterns of practice with differences in outcomes. Examples of "comparative effectiveness" findings include the observation that laparoscopic cholecystectomy is at least as safe as open cholecystectomy although the rate of common bile duct injuries remains uncertain. Another retrospective study confirmed the survival benefit from beta-blockers in patients after myocardial infarction and reported that this benefit is also observed for patients older than 75 years (who had not been included in the clinical trials).

Categories for findings reported by COER-funded primary investigators

Descriptive epidemiology: Natural history (follows patient without intervention), description of incidence or prevalence of condition, treatment, or complication, or identification of risk factors.

Comparative effectiveness: Comparison of outcomes associated with different treatments, diagnostic approaches, or other management strategies: "What works best."

Economic assessment: Compares costs and outcomes for different interventions, or looks at the costs of diseases or treatment without examining outcomes.

Patient-reported outcomes: Studies that report general or disease-specific quality of life, functional status, patient preferences, and/or patient satisfaction.

Practice variations: Comparison of rates of utilization of treatment, or service by some categorical group, such as region, demographic feature, provider, institution, time period.

Sociology of health care: Describes patient or provider knowledge, beliefs, and attitudes about conditions, treatments, process of care, etc.

Methodological development: Design, refinement, or validation of a technique for measuring, analyzing, or defining. Includes survey methods and risk adjustment/severity adjustment methods.

Modeling: Use of modeling techniques for decision analysis, predicting outcomes of interest, or determining cost-effectiveness of specific interventions.

Quality of care: Findings related to measurement of health care quality or provider performance.

Systematic review or meta-analysis: Summarizes existing literature with or without statistical analysis.

Legal, legislative, or regulatory: Describes or measures impact of an action of courts or government rulings that is related to health care.

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Appendix 2. Abstract: Presented at SGIM Annual Meeting, April 1998, Chicago

The Outcome of Outcomes Research at the Agency for Health Care Policy and Research

Purpose: The purpose of this study is to assess the contribution of the Agency for Health Care Policy and Research (AHCPR) in supporting outcomes and effectiveness research (OER). Categorization of salient research findings identified by Principal Investigators (PIs) can be compared with the initial expectations of stakeholders so that future directions of OER can be determined.

Methods: A letter was sent from the Director of the Center for Outcomes and Effectiveness Research (COER) to all PIs who had received COER funding between 1989 and 1997, asking them to identify the "most salient findings" from each of their studies. They were asked to supply sufficient material for up to three slides. No specific criteria were provided to define "salience." A taxonomy of 11 categories was developed in order to group findings with common characteristics of methodology or purpose. Two health services researchers assigned findings to up to three categories for each discrete study.

Results: Responses were received from 61 (64 percent) of the 91 PIs, reporting on 115 studies. A total of 246 category assignments were made. Descriptive epidemiology, defined as a description of the incidence, prevalence, or natural history of a condition, treatment, or complication, was the most common type of study reported (24 percent of total assignments made). Studies of comparative effectiveness were also common (17 percent), in which patient outcomes were associated with different treatments, diagnostic approaches, or other management strategies. The majority of these were retrospective studies of administrative data. Other studies fit the remaining categories: economic assessments (12 percent), patient-reported outcomes (10 percent), practice variations (9 percent), sociology of health care (7 percent), methodological development (7 percent), modeling (7 percent), quality of care (4 percent), systematic reviews (2 percent), and policy-related (2 percent).

Conclusion: The studies most commonly identified as "salient" by COER-funded PIs were reports of existing patterns of care and outcomes, and their variability by location, provider, demographic subgroup, or time interval. PIs reported few studies that demonstrate clear superiority of one clinical strategy over another, successful incorporation of results into practice or policy, or interventions that had improved quality or lowered costs. The challenge for the next generation of outcomes research will be to build on descriptive studies and methodological advancements with the goal of measurably improving outcomes, quality, and efficiency of care.

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Page last reviewed October 1999
Internet Citation: The Outcome of Outcomes Research at AHCPR: References. October 1999. Agency for Healthcare Research and Quality, Rockville, MD.