Advancing Shared Decision Making
The Informed Medical Decisions Foundation, now a division of Healthwise, has been working to advance evidence-based shared decision making since 1989. We believe the only way to ensure that high quality health care decisions are being made is for a fully informed patient to participate in a shared decision making process with their clinician. Through our research and advocacy efforts, we are dedicated to helping people make better health decisions.
Editor’s Note: Join us as we explore questions to evaluate and document the impact of decision aids in routine clinical care. Check back for additional posts.
Last week we looked at evaluating the effects of decision aid (DA) exposure on the decision-making process. Our final evaluative question asks whether the DAs are actually helping patients make better health decisions.
How would we know a “better” decision if we saw one? Donald Berwick, former director of the Centers for Medicare and Medicaid Services, proposed what he called the “Triple Aim”: better health care and better health at lower cost. One way to answer the question of whether the decisions are “better”—and thereby demonstrate the “value” of using DAs and other patient support materials—is to collect data to evaluate how each of these aims is affected.
Triple aims, of course, entail three different kinds of evaluations.
Decision aids and better health care
There may be contexts for saying that in order to best serve patient interests, certain decisions are either more or less prevalent than they should be. For example, there may be certain tests or surgical procedures that are believed to be overused; other interventions that may be thought to be underused; and certain patient self-management behaviors (such as exercise or not smoking) that are considered very likely to serve patient interests well. In those contexts, tracking the aggregate rates, either from records or specially collected patient reports, may support some conclusions about whether the use of DAs is having a positive effect on the decisions being made.
However, DAs are most often used when there is more than one reasonable option, and so what is best is likely to depend on the individual goals, concerns, and preferences of the patient. In such cases the aggregate rates of tests or procedures do not provide information about how well patients and decisions are being matched. To assess that, it is necessary to ask patients about what is important to them relevant to the decision, and then assess how well the decisions they make align with their expressed goals, concerns, and preferences.
Decision aids and better health
For many decisions about medical and surgical interventions, the target is some symptom that is reducing patient quality of life. In those instances, measuring the status of those symptoms and the patient assessment of quality of life before and after the target decision can provide that information. For those managing chronic conditions, follow-up assessments of how well managed or controlled the patients consider their conditions may help assess health-related outcomes. There may also be measures available from medical records, such as blood pressure readings, that can serve as indicators of health status. Of course, we must keep in mind that patient-centered care means giving priority to what the patient considers important. Therefore, someone with a herniated disc may choose to conservatively manage low back pain and forgo the surgery that would relieve the pain more quickly. That person’s pain score would likely be worse than that of the person who chose surgery, yet each might have made a “good” decision. Nonetheless, despite exceptions for some decisions, in aggregate we hope that informed decisions would produce better health outcomes as reported by patients. In any case, we certainly need to collect the data that would enable us to say when that is and is not the case.
Decision aids and lower costs
The third aim—to lower the costs of medical care—is one of the hardest to assess. To do that, it is necessary to add up the medical services patients received for some period of time after their decision that could reasonably be related to their condition and its treatment. The time period must be long enough to capture the services associated with conservative management, and long enough for someone who initially opted for conservative management rather than a surgical intervention to have a change of heart and get surgery. It also must be in a setting in which all (or most of) the problem-related medical services received by the patients can be captured. That almost certainly means working with a payer so that costs and services will be known regardless of who delivers those services.
Come back next week to learn the key elements of studies needed to better understand the effects of decision aids.
The next key evaluative question is this: How was decision making affected by exposure? There are a number of reasons to introduce accurate, complete, understandable information to patients. And a comprehensive assessment of how well those objectives are achieved requires appropriate data collection procedures and measurement. Continue reading
Together, Jack and Al wrestled with how to find the “right rate” of medical care, preserving wanted variation attributable to patients’ clinical conditions and preferences while reducing unwanted variation due to clinicians’ preferences. They concluded that the answer would be found in ensuring that patients are fully informed about and involved in their medical decisions. This melding of minds produced the Informed Medical Decisions Foundation in 1989. And for 26 years we’ve had truly big shoes to fill in carrying forward their ideals! Continue reading
Any evaluation of the effects of adopting DAs has to start with the question of the extent to which they are used by the patients who need them. How well are they disseminated? This, in turn, requires collecting four different kinds of information. Continue reading
“More accurate than traditional biopsies” and other misinformation about a new prostate cancer test from NY-Presbyterian Hospital
The release quotes the study author speculating that the new test could “replace traditional surgical biopsies.” But that’s not what the study suggests. Biopsies will still be necessary to confirm prostate cancer in those who test positive; the study shows potential just to reduce the number of unnecessary biopsies. Continue reading