Participate in a Research Study? It May Improve Your Own Health as Well as Others'

University of Washington Professor of Nursing Cynthia Dougherty recently completed a study focused on heart disease patients who had received implanted internal defibrillators—a major surgery that requires intensive recovery and rehabilitation.

Patients must adapt to a new way of living and Dougherty's research explored ways to help these patients succeed. The participants followed an exercise program and then gave personal testimonials about the experience. Many participants said they were happy to have joined the study. They felt healthy—and they contributed important scientific knowledge which will help others who have a similar heart condition.

And yet, for this study, Dougherty had to ask more than 3,000 people to participate before reaching 160 participants to enroll in the exercise program.

"Every single person who makes the vital commitment to participate in research to improve their own health also makes a significant contribution in helping others who have heart disease," Dougherty said. "I am struck by the generosity and graciousness of those who work with us in research, even when they are not assured a direct benefit to themselves. For them, I am eternally grateful."

UW biobehavioral nursing and health systems professor Cynthia Dougherty focuses on cardiac disease management, psychological and behavioral interventions, exercise and activity interventions, and end of life care in advanced heart disease.

Dougherty is a vocal proponent of participation in scientific research and studies heart disease at UW Medical Center, where research- and evidence-based medicine is a guiding principle.

Patients who receive health care at UW Medical Center have access to research investigations that may improve their own health and those with similar conditions. Some people, though, are reluctant to participate in scientific research, and they offer the following reasons: Too busy. Too sick. Too complicated.

Or—it takes too much time, and it's not important to my health.

Dougherty said, "My goal is to reach and inform every person about the research we have underway, who has the types of heart disease we study. Then, each person has the right to decide if they want to participate.

"As health care providers, it is our responsibility to make known the studies that may affect our patient's health, and then allow that person to make the informed decision about participation," she said.

Dougherty also mentioned that people have genuine concerns about their health privacy. Those concerns are often mitigated once they are made aware of the stringent scientific regulations that are in place to protect privacy.

On any given day at UW, hundreds of researchers are at work examining the various complexities of heart disease. Some researchers focus on prevention strategies. Some study methods of diagnosis, hoping to improve the accuracy and speed of diagnoses. Still others research the efficacy of various treatments available to people with heart disease, analyzing which treatments work best within a population or individual.

The success of these research studies and the validity of their findings depend on voluntary, active participation from individuals willing to help advance science and improve health care. It is important to note the other side of participating in scientific research, which is the knowledge that studies are being conducted all the time, and outcomes from these studies may affect a patient's treatment plan.

Staying up to date on the latest research can help patients advocate for themselves. Unless a patient is treated at an academic medical center or research-based clinic, he or she may not know the most up-to-date evidence and research from the healthcare provider, let alone whether they can participate in a research study.

The landscape of heart disease is changing. Rates of the most common forms of heart disease are falling. There are a number of factors contributing to this trend. Drugs that help lower cholesterol and high blood pressure, like Crestor and Diovan, ranked in the top ten most prescribed drugs for the past four years. Rates of smoking—a known risk factor for heart disease—have also been falling.

Despite these reductions in heart disease incidence, heart disease and stroke are still the number 1 killer of U.S. adults, totaling more than 600,000 deaths per year.

As the disease evolves, so must the research—and the call for willing participants.

The University of Washington School of Nursing—one of the nation's premiere nursing schools—is dedicated to training the future generation of nurse leaders, advancing nursing science and improving the health of communities locally, regionally and globally. For more information, visit nursing.uw.edu.

Photo © Clare McLean