This study identified, evaluated, and synthesized research on the effectiveness of tools intended to inform patients about their medical choices, their treatment alternatives, and the risks and benefits of those alternatives. These tools include interactive computer disks, videotapes, audiotapes, brochures, and computer-generated fact sheets to help patients make decisions about medical screening and treatment. The research found that although some studies do point to the promise these tools hold for helping patients and consumers make informed decisions, few controlled and comparative studies have been done. Specifically, only a few treatment choices have been examined, and most studies have looked more at the effects of the tools on patient knowledge/satisfaction and less at the effects of the tools on patient-clinician communication and health behavior/outcomes. Future studies need to be better grounded in theory and draw upon the empirical evidence of other relevant disciplines. Four areas have been identified as priorities for future research. These include an assessment of the effects of informatics tools on a wider range of outcomes, identification of factors that influence patient use of these tools, assessment of the effects of tools on patient/clinician communication, and analysis of the cost effectiveness of different types of patient informatics tools.
The purpose of this study was to identify, evaluate, and synthesize research on the effects of informatics tools and decision aids on patient decisions about medical screening and treatment. The study assessed the findings, the quality of the research, recommendations for research design, and priorities for future investigation.
Health information and medical care organizations are investing in the development and dissemination of health informatics tools to help patients and consumers make decisions about screening and treatment. These tools provide treatment- and disease-specific health information to patients, especially when they are facing choices about the ways to treat and manage their health conditions. Information about the risks and benefits of making alternative choices is often included in these tools. An example might be the choice between "watchful waiting" and surgery as responses to low back pain or for benign prostatic hyperplasia. Although patient health informatics tools have the potential to empower patients to make more informed choices, there is limited empirical evidence of their value. Many studies have been small and exploratory, and their research designs have not always employed rigorous controls, adequate sample size, or standardized measurements. Further, it is difficult to ascertain what the tools' effects have been on patient outcomes or health care costs. This study attempted to analyze the literature to see if there were any answers to these questions.
The study reviews both computerized and noncomputerized informatics tools and decision aids, including such media as interactive computer disks, videotapes, audiotapes, brochures, and computer-generated fact sheets. Experts and researchers in the United States, Canada, and the United Kingdom were consulted to make sure that the study captured as much of the relevant existing research as possible, and that the analysis of it was systematic and comprehensive. Both the published and unpublished literature about the effects of patient informatics tools and decision aids were reviewed, with particular attention paid to findings and the research quality.
Only 30 controlled studies were identified for evaluation and synthesis in this area; the study presents detailed comparative information on these studies. Some of the more substantive findings suggest that the use of informatics tools can increase patient knowledge of treatment alternatives; further patients report that they like the tools. Some studies report effects on treatment choice, but the number of underlying health conditions and range of tools studied are quite limited. Little is known about the operational and background factors that may influence patient use of informatics tools, such as the requirement for a second visit to use them.
Although patients may tend to ask their physicians more questions as a result of using the tools, their effects on broader patient/clinician communication patterns or on time burdens imposed on clinical staff have not been studied. Some studies have shown that information tools can increase patient adherence to prescribed medical regimen and influence patient preference for nonsurgical interventions. The body of literature would improve if future studies assess a wider range of treatment choices, describe the context of implementation, and document the effects of information tools on patient attitudes, treatment selection, health behaviors and outcomes, and costs.
Much work remains to be done to better understand patient health informatics and to ensure that future tools will be developed and supported on the basis of sound health services research. There are many issues to be addressed. Only a few treatment choices have been examined, and few studies have investigated the effects of tools on patient/clinician communications and health behavior/outcomes. There are no comparative studies of the cost and effectiveness of different types of tools, particularly in the case of computerized versus noncomputerized tools. The studies are of varying methodological quality and most have been exploratory. The cost and clinical significance of informatics tools need to be clearly established by more rigorous research designs, including use of randomized control groups, adequate sample sizes, a wider range of measurable effects, and standard outcome measures.
Future research priorities include 1) identifying factors that promote the use of information tools, 2) assessing the effects of tools on the nature and content of patient/clinician communications and related clinician workload; 3) assessing the effects of tools on health outcomes and health behavior, including quality of life; and 4) comparing and examining the cost effectiveness of different types of patient informatics tools for specified objectives.
Use of Results
This study points to the need to conduct systematic and rigorous research on the use of informatics tools at a time when investments in these tools are being made without sufficient knowledge about their effect on patient decisionmaking, health outcomes, and related costs. Suggestions are made for upgrading the quality of future studies to methodological standards found in health services and clinical research.
By organizing information about the state of our knowledge base, the report is intended to help decisionmakers better understand what is known about consumer/patient health informatics tools. Researchers from all fields can use the report to develop future research projects, and especially to identify specific variables that need further investigation. Practical information on how to reach the developers of some of the existing tools is included as well.
AGENCY SPONSOR: Agency for Health Care Policy and Research, Center for Organization and Delivery Studies
FEDERAL CONTACT: Denise Dougherty
PHONE NUMBER: (301) 594-1321
PIC ID: 6376
PERFORMER ORGANIZATION: Research Triangle Institute, Research Triangle Park, NC