Trends in health care policy reflect the belief that patients should participate in determining their own care, known as the shared decision-making model, but little has been done to help or encourage consumers to participate in these decisions, according to this review of previous studies on the process.

Medical treatment decisions are critical to patient welfare, yet the decision-making process often suffers from poor information and communication and little attention to what patients want. This article, citing more than 90 studies, reveals the role of the patient in the process is an unsettled area. Patient decision-making aids (PtDAs) have proven to help consumers participate more effectively but are often not made available by doctors. Information on the Internet is widely available but not moderated or verified and has not yet been shown to help patients make good decisions.

Key Findings:

• Patients rarely feel they have the role they want in treatment decisions; they feel this way whether they want more or less involvement.
• There is considerable debate about patient involvement and much worry over conflicts between doctors, patients, payers and the ability of society to pay for expensive care demanded by patients. Evidence, however, shows better informed patients may actually choose less aggressive treatments than physicians.
• Structures in U.S. health care, including legal issues, payer systems, quality care standards and a fragmented information system, create barriers to patient involvement.
• Effective tools have been developed to help patients participate in some treatment decisions, but doctors often fail to make these PtDAs available, citing practical reasons and general reluctance to involve patients.
• Meanwhile, patients increasingly demonstrate their desire for more medical information by turning to the Internet. But this information may be wrong, confusing or misinterpreted by the patient and has not been proven to improve patient decisions.

If patients are to play the role they want, the medical decision-making process must be studied and changed to engage patients and remove barriers to their involvement. The goal should be to help patients and providers make decisions together to ensure “the right care is given to the right patient every time.”