The National Survey of Medical Decisions (The DECISIONS Study)

Purpose

The National Survey of Medical Decisions was designed to collect nationally representative data from adults age 40 and above on a variety of medical decisions from the patient perspective, using a random digit dial (RDD) telephone survey. The study was designed to assess the perceived degree of involvement in medical decisions across a range of different conditions, including cancer screening tests (colorectal cancer, breast cancer and prostate cancer), initiation of medications (for hypertension, high cholesterol and depression), and surgical interventions (knee/hip replacement, cataracts and surgery for lower back pain). An additional module on coronary artery disease (involving decisions relating to heart bypass survey or angioplasty) was included. The goals of the study were to address questions about the prevalence of such common medical decisions (i.e., how often do people face such decisions) and whether they result in action, as well as the quality of those decisions and patients’ perceptions of involvement in the decision process.  The study was designed to optimize comparisons of decisions across the various types of conditions mentioned above, and to yield a rich dataset for detailed analysis both within and between decisions.

The specific goals of the DECISIONS Study are to:

1. Gather nationally representative data regarding patient decision making across a range of different conditions, including cancer screening tests, initiation of medications, surgical interventions and decisions related to treatment for coronary artery disease.

2. Determine the prevalence (e.g., how often people face such decisions) and outcomes (e.g., whether the decision results in action) of these decisions.

3. Assess the process and quality of medical decisions made including patients’ perceptions of involvement in the decision process, where patients get medical information, and whether they know some basic facts about the decisions they make.

Findings

Further details of the study including the full dataset, codebook and documentation are at the Interuniversity Consortium for Political and Social Research (ICPSR) data archive.  The web page for the survey has been created and a persistent URL generated.  The data and documentation are available to interested researchers.

The project is now complete. The September/October supplement issue to Medical Decision Making features eight original articles, each exploring an aspect or implication of the DECISIONS study findings, from how the Internet plays a role in patient decision making to how a patient’s race or ethnicity may be associated with medical experience, or how a patient’s perception of health risks affects their involvement in their medical decisions. The study concluded that many patients do not have key types of information needed to make the best decisions.