The health care system has long been focused on finding ways to improve patient care.

But to pharmacist Josh Neumiller and other members of an interdisciplinary research team at Washington State University Spokane, too often something was missing.

Patient perspectives.

“We flipped that around,” explains Neumiller, an associate professor at WSU’s College of Pharmacy who studies medication lapses and other adverse conditions among those who take multiple prescription drugs. “There’s been this realization…that the people these improvements were supposed to be for weren’t being included in the decision-making process.”

Neumiller, along with researchers from the WSU College of Nursing and Providence Health Care, has drawn national attention for the decision to put patients alongside scientists on the research team. They helped design the study, used their own experiences to assist in identifying pertinent issues, and worked with experts to pose questions in ways that folks without extensive medical backgrounds would be most likely to understand.

The result is a study that has given researchers detailed insights into the day-to-day challenges faced especially by older Americans trying to follow often complex medical regimens while coping with multiple chronic conditions.

Those findings now are being used to develop new strategies for reducing medication errors and adverse side effects, particularly in outpatient settings. The first large-scale test of this “educational toolkit,” designed to improve the way patients and health care providers interact, is expected in the months ahead.

Neumiller says the study showed that while patients generally consider their doctors among the most important people in their lives, effective communication is lacking—not purposely but because medical issues can be extremely complex.

Patricia Benson of Spokane, who takes multiple prescriptions herself and was among the patients recruited to serve on the research team, believes the quality of those interactions can help improve outcomes.

“I think one of the things we, as patients, really helped them to understand is that it’s hard for us to know what questions we should even be asking when the doctor gives us a new prescription,” says Benson.

With that in mind, researchers began crafting the educational toolkit.

The centerpiece is a small card with the types of questions patients should consider asking during exams and consultations. Examples include determining whether the medication should be taken with or without food, understanding common side effects, and how they might best be mitigated.

“I came away from this experience with an understanding that we, the patients, need to let our doctors know what’s happening, and whether there are negative side effects that make us not want to take a particular medication,” says Benson.

Study participants were given tablet computers with a series of questions to answer each day so researchers could get a better sense of how errors or lapses might occur.

Nationally, medication errors and adverse side effects are major concerns. An estimated 1.5 million people are harmed by adverse medication encounters each year, and about 7,000 die. Studies indicate about 25 percent of adverse effects are preventable.

Health care research at WSU began moving toward greater patient involvement about 10 years ago. Then, in 2010, Congress allocated federal funding designed to promote patient-centered research and the WSU Spokane study of medication errors in 2012 was among the first projects to receive financial support.

Former WSU nursing professor Roxanne Vandermause, now at the University of Missouri-St. Louis, was a principal investigator along with Neumiller.

“In the past, we’ve always talked about community-based participatory groups,” says Vandermause. “The idea was to listen but the problem was the patient wasn’t always at the center of the project.”

The Spokane study pushed the patient focus to new levels.

“We didn’t even write the proposal without having patients right there at the table with us,” she explains. “As academics we had this idea of what we thought should be asked, but patients were able to explain what makes sense to them.”

Neumiller hopes others will embrace the approach.

“In our minds, we always think we’re doing what’s in the patient’s best interest,” he says. “We counsel people on a new medication, why they are taking it, and what it does. That’s just part of what we should be doing. We also need to be asking the patient what they want.”

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2016winter-power-patient-extra-thumbKnowing what to ask