We all know what informed consent means. But recently we've been thinking about what it should mean: more than signing a piece of paper about a specific medical procedure. It should mean that patients understand not only the specifics of a treatment but its context. Why was this treatment chosen? What are the risks? Perhaps most important, what are the alternatives? Research has shown that patients often choose a more conservative less invasive procedure when given all the options.

Both my colleague Julie Barnes and I have been learning about this issue; Julie by participating in a Feb. 4 meeting here in D.C. hosted by the Foundation for Informed Medical Decision-Making, and me by doing some reading, including a health reform white paper by the Dartmouth Atlas. The Dartmouth researchers include informed patient choice and shared decision-making between patient and doctor as a key component in repairing our health care system and helping patients get treatment that is appropriate for their condition and in tune with their values. As a recent AP article on shared-decisionmaking put it, think of it as "Informed Consent 2.0."

The major message at the conference Julie attended was that informing and involving patients in decision-making is not the norm. But it should become the accepted standard of U.S. medical care, according to the foundation, co-founded by John Wennberg, former director of The Dartmouth Institute for Health Policy, and Albert Mulley, chief of general medicine at Massachusetts General Hospital. The meeting sought to recruit an "army of allies" to help develop and implement ways of allowing patients and physicians to share decision-making.

Julie heard several presentations on how medical decisions are made today, the barriers to change, and why the physician-centered status quo doesn't serve patients. Prof. E. Dale Collins of Dartmouth discussed the shared decision-making in the comprehensive breast cancer program at Dartmouth Hitchcock Medical Center. It includes a computerized assessment of decision-making and treatment preferences, which is forwarded to the surgeon before the patient has her consultation. The result has been improved patient-surgeon interaction, reduced distress and less decisional conflict. She also heard about Washington state's modified informed consent laws that provide a more patient-oriented standard of decision-making. Health Net, a managed care company, shared its experience with health coaching and patient decision aids, emphasizing the need to work with physicians and the company's sophisticated approach to identifying and prioritizing patients for outreach.

The highlight for Julie was the final panel, where Wennberg, Debra Ness of the National Partnership for Women and Families and Peggy O'Kane from the National Committee for Quality Assurance connected the dots between informed decision-making and health care reform. They argued that a lack of patient involvement in medical decision-making is wreaking havoc, contributing to underuse, misuse and overuse of health care. The panelists suggested that patient engagement is a critical step toward reducing harm, disparities and disease burden and waste. Solutions will include more patient-centered medical homes, greater patient access to their medical records and expanded comparative effectiveness research.

That leads us directly to the Dartmouth Atlas White Paper, which came out in late 2008. We suspect most of our readers are quite familiar with Dartmouth's work on overutilization and unwarranted regional variation in medical practice. But their work on decision-making, and its potential role in evening out the unwarranted variation, has gotten less attention. (The most relevant part of the white paper is pages 10-13):

Reducing unwarranted variation in preference-sensitive care and establishing the right rate of demand for discretionary treatments require improvements in clinical science and fundamental changes in the ethical standards that govern the way patients are informed. Delegated decision-making should be replaced by shared decision-making, and the doctrine of informed patient consent replaced by informed patient choice.

The paper recommended three major strategies: (obviously, this is for when there are clinically appropriate alternatives to surgery, not for when surgery is clearly the best option for the patient).

One, revised informed consent laws so they become informed choice. One model is that Washington State statute, which Julie heard about. Among the provisions: physicians who use patient decision aides get greater immunity from "failure to inform" malpractice suits than under standard informed consent provisions.

Two, make informed decision-making part of provider payment reform (after appropriate models are tested) so that hospitals and surgical centers are only reimbursed for elective surgery if they support a high-quality shared decision-making process; Start with the 10 common conditions where there is a lot of variation in discretionary surgery, such as early stage breast and prostate cancers, or arthritis of the knee, hip and spine. Research is also being done to see how various co-payments and cost-sharing models affect decision-making about care.

Third, making informed patient choice part of the Veterans' and military health systems.

The Dartmouth team said if we want to restrain costs and expand coverage we need a "coordinated, mutli-pronged strategy." Putting knowledge and tools in the hands of the patients can be part of that armament.