A portrait of heart failure in the United States would be etched in tones gray and gloomy. Some 5.7 million people have hearts that can’t pump sufficient volumes of blood to the rest of the body. The disease costs nearly $31 billion a year – a figure that doesn’t include the many ways it diminishes the quality of life for its sufferers.

But there are bright spots in the otherwise dismal portrait, says Dr. Larry Allen, a cardiologist at UCHealth University of Colorado Hospital on the UCHealth Anschutz Medical Campus and medical director of Advanced Heart Failure at the University of Colorado School of Medicine.

“Heart failure is one of the most common chronic conditions in the world,” Allen acknowledged. “The good news is that we have a number of medications that make a big difference for patients with the disease.” They include meds to rid the body of excess water, strengthen the heart muscle, relax blood vessels and raise potassium levels – all of which improve cardiac function, making people feel better and live longer.

Missing the meds

But Allen quickly adds a dose of bad news. “When we look across the U.S. at who is getting the medications, we find that, depending on which type of medication, anywhere from 20 percent to 80 percent of patients aren’t getting their medications,” he said.

Even among patients who are prescribed these medications, many don’t necessarily receive optimum care, Allen added.

“We have great therapies, but there are a lot of them, and each one is complicated because you have to gradually intensify the dose – and that’s just not happening as often as we would like,” he said. For example, only about half of all patients on beta blockers for their heart failure receive 50 percent of the maximum recommended dose, Allen noted.

Terms of engagement

Allen does not see cost as the major culprit. He points instead to providers who may be reluctant to make changes to patients’ medications without an emergency and to patients who feel “disempowerment,” or a lack of involvement in their own care.

Allen is out to change that with a study spanning all UCHealth hospitals. It uses the Epic electronic health record (EHR) as one tool to encourage heart failure patients and their providers to communicate openly and work together to achieve the best care possible. The strategy aims to move as many patients as possible to the optimum dosage for their prescribed medications.

The study targets patients with left ventricular ejection fractions – a key measure of the heart’s pumping power – of 40 percent or less. Half of those enrolled – the overall target is 300 – receive standard care. The study group receives materials through My Health Connection, the Epic patient portal, prior to their next appointment with their cardiologist. The materials include a three-minute “patient activation” video that emphasizes the importance of patients taking their heart failure medications and speaking honestly with their physicians about their disease.

Patients also receive a one-page checklist of heart failure medications with brand and generic names to help them identify what they take and the dose, as well as information about each category of drug. A bottom-of-page message emphasizes the importance of taking control of their own care and asking questions of their providers. Patients bring the completed checklist to their clinic visit as an icebreaker of sorts for a two-way conversation aimed at identifying at least one positive change in their care by visit’s end.

If it sounds like a straightforward approach, that’s by design, said Gracie Finnigan-Fox, project manager for the study and a senior professional research assistant with the Colorado Program for Patient Centered Decisions (Allen is a member of the program’s faculty). Finnigan-Fox handles patient enrollment, follow-up, record-keeping and materials delivered to patients through My Health Connection to help keep them involved in their care.

“The beauty of the study lies in its simplicity,” Finnigan-Fox said. “The three-minute video and the checklist give patients a place to start with their providers. Providers have been very pleased that patients have been engaging them more.”

Flip the script

That’s an important shift from a long-established dynamic that often puts providers at the center of the prescribing universe.

“Traditionally, decisions about medications have been relegated only to physicians,” Allen said. “For patients, there have not often been discussions about ‘Why am I on this medication or not on this medication?’ I think patients want to have some control over their heart failure management, but they feel that FDA-regulated medications aren’t really something they have control over.”

As for providers, Allen believes that for too long, they’ve lacked an incentive to invest time in engaging with patients to optimize their medication dosages. This “clinical inertia,” as he calls it, has spawned a reluctance to “rock the boat,” especially if patients profess that they’re doing ok. He believes that the study tools could put patients in control of their clinic visits, but focus the discussion on the medications proven to be effective in improving their condition.

Tailored education

For Alexander Bruce Campbell, 73, the study is important, but only a first step in involving heart failure patients in their care. A private practice lawyer for 30 years in Denver, Campbell went on to complete a 14-year term as a federal bankruptcy judge before retiring in 2015. He said he had no history of heart issues until last summer when he began noticing unusual shortness of breath.

The bouts went on long enough that he’d planned to visit his primary care physician, but a summons for jury duty and selection to serve put that on hold. In the midst of deliberations after a weeklong trial, his symptoms worsened sufficiently that he visited an urgent care clinic. There, an EKG revealed atrial fibrillation, which sent him ultimately to UCH for a weeklong stint in the Cardiac Intensive Care Unit.

Campbell left UCH with a diagnosis of heart failure – an echocardiogram showed his left ventricular ejection fraction stood in the mid-20s, he said – and an ongoing risk of blood clots that require blood thinners.

After enrolling in Allen’s study, Campbell met with UCH cardiologist Dr. David Kao for an 80-minute visit he approvingly described as “unrushed, with lots of explanation.” Kao, he added, was “incredibly candid” in stressing to Alexander that while cardiac rehabilitation and attention to diet are important parts of his care, it’s the heart failure medications, including beta blockers, that will play the biggest role in managing his condition.

“He was not resistant to a holistic approach, and he encouraged me to listen to the dietitians and exercise specialists, but he was very clear that they won’t alone fix my heart,” Campbell said.

Campbell said that he accepts Kao’s clinical judgment that the medications are effective. “I get the picture of how important the physicians feel the meds are in the treatment,” he said. Still, he feels the study tools are only a first step in engaging patients.

“Philosophically, I couldn’t agree more that the study reflects the concern about the importance of communicating and engaging patients so they will appreciate the importance of the medications,” Campbell said. He made clear, however, that he’d like to see even more comprehensive education about heart failure that avoids a “one-size-fits-all” approach and takes into account “different learning styles and abilities.”

First steps

Allen acknowledges that the study narrowly focuses on optimizing patients’ heart failure medications and improving their adherence to their medication regimens. It’s one step toward a broader discussion of issues that affect care.

“We’re saying, ‘Let’s start with the low-hanging fruit,’” he said. “The challenge with this study is to redirect the conversation to things that we have evidence for.”

Longer term, Allen sees the study as one piece of an ongoing move to population health, which stresses using standardized, evidence-based care to manage patients with heart failure and other chronic conditions. A key part of the groundwork for the study was work with UCHealth’s Information Technology team that integrated the software used to store echocardiogram images, the best way to pinpoint the left ventricular ejection fraction, with the Epic EHR. In addition, the ejection fraction appears in the EHR as a number, meaning that Allen and his colleagues can identify all the heart failure patients in the UCHealth system who fall below the 40 percent threshold.

“That number triggers me, as a provider, to say, ‘Are my patients getting the right meds for this serious problem?’” Allen said. “Without that number identified, that is very difficult. If you can’t find the patients, it’s hard to automatically employ health resources to improve these conditions.”

The availability of reliable data, on the other hand, opens the door to examining prescribing patterns across different care settings and different patients and evaluating the effectiveness of his own study and others, Allen said.

His work ultimately is an effort to use technology as a prod to old-fashioned give-and-take, Allen concluded.

“Instead of a patient coming in and saying, ‘I’m doing great,’ now patients can come in and say, ‘What can I do to make this better?’” he said. “It’s now an easier thing for a clinician to say, ‘Great. Let’s have a discussion.’”