By Cecilia Chan, GSN Managing Editor

More than 13,000 people in Arizona die each year from heart disease, while one in three people with cardiovascular disease succumbs to the disease.

“Almost every 40 seconds we have a patient with a heart attack,” said Gilbert-based cardiologist and researcher Dr. Nabil Dib. “It’s the No. 1 killer in the westernized world. There are 5 million admissions in the U.S. for heart failure per year, and we have 350,000 people die from heart failure a year.”

With that in mind, Dib and his team at the International Society for Cardiovascular Translational Research are looking to give heart patients a say in the treatment of the disease. Nib founded the organization in 2007 with the aim that includes expediting new therapies to patients.

The nonprofit group aims to recruit 1 million patients with cardiovascular disease or risk factors for heart disease such as diabetes and hypertension to participate in a new Patients Voice Program.

“Currently, all the decisions in healthcare are being made without patient participation,” Dib said. “The goal of this is to have patients have their own voice, to be considered for the purpose of regulatory approval for treatment or new therapy, payment for new therapy and recommendations for physicians.”

Under the survey-based program, enrolled patients learn about treatment options and provide their input, which is then compiled and given to decision-makers such as researchers, the Food and Drug Administration, Centers for Medicare and Medicaid Services and healthcare providers.

Those groups in turn help formulate guidelines, policies and healthcare decisions.

For instance, Dib said, health insurance companies may look at two treatment options, each with benefits and side-effects, and don’t know which one patients would prefer.

“So, the question comes to us and we distribute it to patients, ‘here are two scenarios, two options and here are the advantages and disadvantages for each, which is the one you prefer,’” he said.

The patients’ responses go to the insurers to help them make  a decision.

The input also will help physicians determine therapies for patients, Dib said.

Although physicians use their own judgment when treating a patient, most follow clinical practice guidelines and recommend appropriate care based on available scientific evidence and broad consensus.

But some procedures may improve mortality but are not good for quality of life and vice-versa, Dib said.

Younger patients may want a longer life than quality of life, while the reverse may be true for older patients, according to the doctor.

The current guidelines don’t take that into account, Dib said.

Feedback from those enrolled in the program can back up physicians who are reluctant to deviate from recommended guidelines to tailor the care to a patient, according to Dib.

“If they are guided by patient preference, it would make a huge difference for physicians on which therapy he should select for patients,” he added.

Tempe resident Bob Benton is among the 50 heart patients who have so far joined the program.

The 71-year-old suffered a heart attack while playing golf in 2015, the result, he said, from years of smoking and working in a stressful corporate environment.

Today, Benton credits Nib for saving his life. A significant part of Benton’s heart was damaged, leaving him struggling for breath while doing activities such as walking, but Nib’s work with stem cell helped rebuild his heart and put him back out on the golf course.

“We are trying to have patients who have had a heart condition history to provide information about their conditions so they can be part of the decision about their preferred treatment they will receive from physicians,” said Benton, who also sits on the program’s board.

Nib said the group will look to universities, the healthcare industry, social and news media and world of mouth to help recruit patients for the program.

“It’ll take a year or so to be able to achieve something tangible,” Dib said. “Patients love it when we talk to them about it. Patients can participate in the decision-making for their healthcare.”

To enroll in the Patients Voice program: isctr.org/patients-voice.