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SHARED DECISION-MAKING

Featuring Partners HealthCare

This is one in a series of stories about strategies primary care practices are using to increase patient engagement. MHQP is in a unique position to learn about structural programs and innovative practices that help empower patients to be active in their own care, as we have recently completed a first-of-its-kind statewide study of patient engagement activities in primary care practices in Massachusetts with the support of CRICO.

A key element of a successful patient engagement effort is to ensure patients are fully informed and involved in major decisions about their care.

Patients do not always have adequate input into the decisions that clinicians make about their health and their lives. In particular, they often do not know enough about their treatment options – especially the underlying evidence base – to make informed decisions. Even when providers are supportive of patient involvement in decision-making, they may not have the tools or capability to make it happen.

Shared decision-making is a model of patient-centered care that enables and encourages people to play a role in the medical decisions that affect their health. It assumes that consumers armed with good information can and will participate in the medical decision-making process and that clinicians will respect patients' goals and preferences and use them to guide recommendations and treatments.

We spoke with Soren Capawanna, Program Manager for the patient engagement group in the Center for Population Health at Partners HealthCare, and Karen Sepucha, PhD, Director of the Health Decision Sciences Center in the Division of General Internal Medicine at Massachusetts General Hospital, to learn about their decision aid program:

Soren Capawanna:

"One of our key patient engagement strategies is to provide decision aids to the patient in order to improve their satisfaction and experience outside of the conversation that occurs in the clinic with the provider. We encourage patient self-management and strive to increase patient confidence levels by providing patients with tools that not only improve their understanding of their disease, but equip them to manage their disease. Once a patient gets a new diagnosis, the doctor has an introductory conversation, but the patient has a long road of treatment ahead of them. The provider provides the decision aid to the patient and our hope is that they are reviewing it at home with their family.  When they come back in for their follow-up appointment, they feel more empowered to make a decision with their provider that is in line with their goals and their family’s goals. It’s not just the doctor telling the patient what they should or should not do. For example, before we jump right to recommending back surgery, we want to engage the patient in conversations about their treatment options, what is important to them and to their family, all the pros and the cons of physical therapy, of pain management through medication or surgery. The decision aid helps the patient along this journey of determining what is important in their treatment choices.

We have about 40 decision aids that are available online or in print that cover common decisions for adults. Some of the decision aids include videos of patients talking about their experience with the treatments and doctors explaining the diagnosis and treatment. Providers across the Partners network are able to order decision aids for their patients via the patient’s electronic medical record. Once an aid has been ordered, it is sent directly to the patient through regular mail or e-mail. These orders are tracked internally and data is provided to practices to show which decision aids are being ordered most frequently and by which providers." 

Karen Sepucha:

"I’m an engineer by training, with a focus on decision sciences. I’ve always been fascinated with how people make decisions, particularly situations that require collaborative decision-making –when you have to work with other people – and in situations where there’s uncertainty. In many medical decisions, physicians and patients need to work together to figure out the best choice, while managing a lot of uncertainty. Our work in shared decision-making focuses on training physicians to have good conversations with patients, and providing tools, called decision aids, to patients to help inform and engage them in decisions.  

Decision aids are educational tools and there’s a large evidence base, more than one hundred randomized controlled trials that have tested these tools. They’re different from traditional pamphlets patients might get from their doctor that talk about, “How to get ready for surgery.” They focus on describing different options, the potential outcomes of each option and probabilities of those outcomes, and then help patients focus on what’s most important to them. The studies of these tools across a range of different conditions have found that they are very good at communicating information to patients and that patient knowledge is much higher when we use them. Decision aids also help patients who might have been unsure about what they want to reach a treatment preference. And that’s really important. Patients who might otherwise defer to the doctor, are more likely to share their goals and preferences and play a role in making decisions after reviewing a decision aid. That helps our doctors tailor their recommendations to the outcomes the patient values most.

We have distributed more than 50,000 decision aids since the project first started back in 2005. The most popular topics are treatment of insomnia, anxiety, chronic low back pain, knee osteoarthritis and prostate cancer screening. More than 1,000 unique clinicians and staff have ordered programs for our patients, so this is something that has spread across the entire system. Having the ability to order decision aids integrated into the electronic medical record helps, as does the centralized distribution of the decision aids. We work with different practices and centers across Partners, often engaging staff as well as clinicians, to design workflows that integrate the decision aids into routine care. Strong support from the Center for Population Health, as well as strong support from the clinicians across the sites has been critical for the success of the program.

When we think about what it means to make a good decision, there are three things we’re looking for (1) evidence that the patient is well-informed, in other words, did we do a good job communicating the important information so that the patient understands it; (2) evidence that patients were meaningfully involved, that there was a really good conversation; and (3) evidence of what we call concordance, that we’ve tailored the treatment to what matters most to the patient – so match the right patient to the right treatment. If they say they really want surgery, that’s what they would end up getting. Or if they say they want non-surgical options, is that what they ended up getting? We have done some studies within our patient population to see whether using the decision aids helps achieve these things when used in routine care—and they do help improve the quality of medical decisions. Looking ahead, we are always trying to improve on the available tools and training, so that we can ensure high quality decisions for all patients."

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