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. This is the last post in the series.
Last week we considered what a “better” decision means and how we can evaluate whether decision aids (DAs) are positively affecting decisions themselves. We’ve also looked at evaluating the effects of DA exposure on the decision-making process and whether DAs were disseminated to the right people.
The study designs needed to collect this data vary, and no one study is going to collect data addressing all of these important evaluative questions. However, we very much need more quality data on when and how using DAs affects patient care, and we should try to take advantage of every opportunity to collect good evaluation data when DAs are introduced into a new setting.
There are three elements to think about when considering the collection of evaluation data.
Data collection strategies
Data collection needs to be built into the dissemination and DA delivery process in order to evaluate how well DAs reached the right people. For most of the other objectives (other than costs), data collection directly from patients or providers has to be planned. This may have to include some special-purpose surveys of patients long after the target decisions are made.
For measures of knowledge, decision-making processes, and patient goals and concerns, organizations like Healthwise and Massachusetts General Hospital can provide valuable information and measures that have been evaluated for many conditions and decisions.
Control or comparison data
To assess the impact of having patients use decision support material, it is necessary to collect comparable data from similar patients who did not have access to decision support material (or who had access to different kinds of these materials). One of the most common ways to arrange that is to collect data at a site prior to introducing DAs (so-called historical controls). The other approach is to collect data from patients faced with the same decisions at some other clinical site where no (or different) decision support materials are used.
In summary, we need to gather a lot more systematic data about various aspects of how DAs work when they are integrated into routine clinical care. By planning ahead whenever there is a new opportunity, we can greatly enhance our knowledge both about how best to design and use DAs and about when and how often they produce good results for patients and for all of us.
That said, we do have valuable evidence that decision aids not only improve patients’ knowledge of their options, but also assist people in making decisions that are more aligned with their values and preferences.
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. Continue reading
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