How Patient Empowerment Tools Can Improve Health Outcomes

The fifth year of open enrollment under the Affordable Care Act closed last week, although signups continue in some states. Love it or hate it, Obamacare has frequently been in the public spotlight in recent years, and with an uncertain future it’s likely to remain a focus of heated debate. But amid the arguments over repeal and replace and attempts to eliminate the tax penalty for the uninsured, there’s one wonky element of the ACA that has never gotten the attention it deserves: value-based care.

Shifting the focus to patient outcomes

Value-based care is an attempt to shift providers’ focus from fee-for-service to patient outcomes. It attempts to tie how much providers get paid to treatment protocols and the patient’s recovery, rather than how many tests and procedures were performed.

From a policy perspective, value-based care is an attempt to help control the rising costs of healthcare by reducing the incentives (both financial and legal) of ordering up every single test and recommending every last procedure for every patient.

There’s still plenty of debate over whether value-based care has helped hold down ever-rising healthcare costs. But the focus the ACA places on patient outcomes has produced a broad and growing understanding among providers and advocacy groups that our health system needs to adopt a more holistic, patient-centered approach to care.

What does ‘patient empowerment’ mean?

There’s just one big problem. Patient-centered care requires empowering patients to take charge of their healthcare. But for providers and patients, patient empowerment often means two different things.

For providers, empowerment generally means patients will step up, get engaged and work hard at their own health. That means listening to advice about diet and exercise to prevent or control conditions like diabetes and high blood pressure, and improving “adherence rates” –– how often people actually take the medicines they are prescribed –– above the current 50%.

For patients, however, the crux of the problem is somewhat different. Patient-centered care is recognition that they are a person, not a collection of symptoms, and they expect to be treated as such. But to get that recognition, they need to be able to clearly convey to their doctors –– in the timespan of a 15-minute office visit –– their values and goals for treatment. They also need to be able to ask questions about treatments to explore how their doctors’ recommendations line up with those values and goals.

Currently, there are few models for how to start and carry out these highly personal and often very difficult conversations.

Factoring in quality of life

From fall 2014 to spring 2016, our agency conducted research with providers and patients for a national patients’ rights advocacy organization. What we discovered was that the current healthcare system simply is not structured to take into account patients’ quality of life. But patients don’t know that. They generally assume doctors are taking their overall wellbeing into account, rather than narrowly focusing in on treating a symptom or condition. Meanwhile, unless patients speak up, doctors assume they want all treatment at all cost right up to the last day of life. (Some people do.)

We also found that doctors were more willing to answer questions candidly if patients asked very direct questions. But they rarely took proactive steps to broach sensitive topics. Meanwhile, many patients were hampered by concerns that questions might seem disrespectful. Even more importantly, they usually had no idea what kinds of questions they could and should ask.

Tools to bridge the communications gap

Based on this research, we built two tools to help patients better communicate with their doctors. The first was the Trust Card — an online tool that helps patients create a greeting card that respectfully conveys their expectations and preferences for treatment. For patients, the Trust Card helps them think through their values and goals before an appointment with a new doctor, and gives them a way to start the conversation. For doctors, the Trust Card saves time by helping them quickly understand where patients are coming from and whether they prefer frank information or a more gentle approach to bad news.

Then we built the Diagnosis Decoder — a web-based tool for patients with cancer and other serious illnesses that helps them figure out what to ask at their next doctor visit. The tool is designed to empower patients to understand and prioritize the type of treatment they receive. It makes it easier to start and navigate discussions about treatment choices and factor in wishes for quality of life considerations.



Value-based care sounds wonderful in theory. But there is much to be done to turn that idea into practice. In today’s healthcare system, the yawning communications gap between patients and doctors leads to less than optimal outcomes for both patient and provider. We hope our tools are the first of many experiments that strive to make patient-centered care the norm, rather than the exception, empowering patients to take an active role in achieving the care they want and need.

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