Consumer Health Informatics and Patient Decisionmaking
Although patient health informatics tools can potentially empower patients to make more informed choices, there is limited empirical evidence of the outcomes of their use and of their overall value. Few controlled and comparative studies exist on the effectiveness of tools intended to inform patients about their medical choices, treatment alternatives, and the risks and benefits of alternatives according to a study by Research Triangle Institute for the Agency for Health Care Policy and Research (AHCPR). The study looked at tools that include interactive computer discs, videotapes, audiotapes, brochures, and computer-generated fact sheets to help patients make decisions about medical screening and treatment. According to the study, most research has looked more at the effects of the tools on patient knowledge and satisfaction than on patient-clinician communications and health behavior and outcomes.
The following summarizes the study's 128-page final report (AHCPR Pub. No. 98-N001), which is available free from the HRQ Publications Clearinghouse while quantities last. Copies of the final report are also available from the National Technical Information Service (NTIS).
To identify, evaluate, and synthesize research on the effects of informatics tools and decision aids on patient decisions about medical screening and treatment, the Agency for Health Care Policy and Research (AHCPR) contracted with Research Triangle Institute to perform a comprehensive assessment. It examined the findings and the quality of the existing research and recommended a research agenda 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 facing choices among 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 can potentially empower patients to make more informed choices, limited empirical evidence exists of the outcomes of their use and of their overall value. Many studies have been small and exploratory, and their research designs have not always employed rigorous controls, adequate sample size, or standardized measurement. Further, it is difficult to ascertain what the tools' effects have been on patient outcomes or health care costs. This study analyzed the literature to see if there were answers to these issues.
The study reviews both computerized and noncomputerized informatics tools and decision aids, including such media as interactive computer discs, 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 published and unpublished literature about the effects of patient informatics tools and decision aids was reviewed. Particular attention was paid to the findings and the quality of the research.
Only 30 controlled studies were identified for evaluation and synthesis in this area, and the study presents detailed comparative information on them. Among the more substantive findings, some studies suggest that the use of information tools can increase patient knowledge of treatment alternatives and 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 influence patient use of informatics tools, such as the need for a second visit to use a tool or whether medical office personnel are required to help patients use the tools.
Although patients may tend to ask their physicians more questions as a result of using the tools, their effects on time burdens or on broader patient/clinician communication patterns imposed on clinical staff have not been studied. Some studies have shown that information tools can increase patient adherence to prescribed medical regimens and influence patient preferences 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.
Table 1 [5 KB] summarizes information on key findings and lessons for research.
Much work remains if we are to improve our understanding of patient health informatics and if we want to ensure that future tools will be developed and supported on the basis of sound health services research. Many issues remain 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, especially looking at computerized vs. noncomputerized ones.
- The studies are of varying methodological quality and most have been exploratory.
- The cost and clinical significance of informatics tools needs to be clearly established by more rigorous research designs, including use of randomized, no-treatment control groups, adequate sample sizes, a wider range of measurable effects, and standard outcome measures.
Future research priorities include research to:
- Identify factors that promote the use of information tools.
- Assess the effects of tools on the nature and content of patient/clinician communications and related clinician workload.
- Assess the effects of tools on health outcomes and health behavior, including quality of life.
- Compare and examine the cost effectiveness of different types of patient informatics tools for specified objectives, such as improved decision tools that focus on analysis compared with tools that focus on patient education.
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 these tools are being developed without sufficient knowledge about their effects on patient decisionmaking, health outcomes, and related costs. Suggestions are made in the final report 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 we do and do not know about consumer and 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. Information on how to reach developers of some existing tools is included.
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