From regular maintenance of a medication regimen to ongoing treatment of a chronic disease, patients often have difficulty following a doctor’s instructions—with sometimes harmful and occasionally fatal results.
For the past seven years, the Northwestern University Feinberg School of Medicine’s Health Literacy & Learning Program (HeLP) has led national studies highlighting and responding to communication gaps between medical providers and patients.
“This is not academic, ivory tower research,” says Michael Wolf, PhD, MPH, associate professor and founding director of HeLP. “This is coming up with strategies to simplify the patient interface of healthcare, one task at a time.”
HeLP activities range from redesigning and translating prescription drug labels, to leveraging available health and consumer technologies that support chronic disease management. Under a unique collaboration, HeLP works with Northwestern’s School of Education and Social Policy (SESP) to apply education and learning science principles to solve longstanding health system challenges.
“Our partnership with SESP is invaluable,” says Dr. Wolf. “Learning Sciences faculty have been able to transfer their expertise, applying best practices for how a young mind can better grasp math and physics toward how an older patient might understand a disease and engage in a treatment plan.”
SESP researchers are applying techniques like eye tracking to examine how consumers review over-the-counter drug product packaging, and whether the use of icons for the ‘Drug Facts’ label could ensure that important information is adequately highlighted, says David Rapp, PhD, associate professor of learning sciences and cognitive psychology.
“Where do people look, and what draws their attention?” he asks. “A lot of what we do in our lab is basic research. HeLP projects really force the work to become applied, by seeing how we can improve the understanding of actual, everyday health materials.”
Dr. Wolf’s team complements this research by testing cognitive abilities and measuring working memory to ensure that reading or recall issues are not affecting study participants’ performance. “Understanding how people approach and even struggle with the task of reading a drug label or navigating a health website will help us optimize the design of each task.”
The promise of their unusual alliance is what inspired David Baker, MD, MPH, chief of the Division of General Internal Medicine and Geriatrics at Feinberg, to provide initial financial support for HeLP. “I said, ‘If you can bring in people from the learning sciences, it would be so different than what everybody’s doing right now,’” Dr. Baker recalls. “Everybody was focused on re-writing materials at a simpler level, as if that alone was going to solve the problem.”
Range of expertise
HeLP’s efforts span topics ranging from preventive screening, to wellness promotion, to the use of health technologies. “We’re a generalist program—pediatric to geriatric, prevention to management of chronic conditions,” Dr. Wolf says. “To quote a close colleague, ‘our job is to figure out how to confuse people less when it comes to healthcare.’ In any clinical context or setting, we deconstruct the patient’s role and critically examine it, asking ourselves if we could better help them achieve success.”
Their work has drawn significant interest from the broader healthcare community, including numerous grant awards from the National Institutes of Health, Agency for Healthcare Research and Quality, Centers for Disease Control, private foundations, and industry. Wolf, a behavioral scientist and recipient of a J. William Fulbright Distinguished Faculty Scholar Award, believes “everyone can appreciate the need for easy-to-understand healthcare, and can probably share at least one frustrating experience.”
That’s especially true for older adults, he adds, noting a recent study his team published in the Archives of Internal Medicine that demonstrated how easily seniors can overcomplicate standard, multi-drug regimens. “Americans, especially as we age, are taking an increasing number of prescription drugs,” he says. “Beyond cost, one of the most significant barriers to medication adherence is regimen complexity.”
Dr. Wolf and colleagues from Emory, Louisiana State, and Harvard have proposed and are currently testing a “Universal Medication Schedule” that would standardize how doctors write and pharmacists transcribe prescription instructions. They envision all patients receiving directions with clearly identifiable times of day like morning, noon, evening, and bedtime, rather than vague descriptions such as every eight hours or three times times daily.
“There are so many cases that talk about how healthcare is hard to manage,” he says. “As patients, we have to take a personal role in our healthcare. As a health system, we should feel compelled to provide patients and families with direct, understandable, and actionable information to support their ability to access and use services and make informed health decisions.”
This pragmatic focus has attracted the attention of industry partners. “UnitedHealthcare is asking us to help their customers understand health and their insurance benefits: What is covered and what should you be doing? How much will you have to pay for your next exam? What are the out-of-pocket costs going to be?” The initiative also will focus on helping consumers to safely use and adhere to multi-drug regimens and test online and mobile applications to help patients manage their prescriptions.
This work is especially relevant given that medication non-adherence is estimated to cost the U.S. health care system more than $300 billion annually. “In many cases, the patient’s behavior is at the root cause,” explains Wolf. “We want people to get the maximum benefit from their prescriptions. When patients adhere to instructions, not only should we see improved health outcomes, but we can reduce costs associated with adverse events and re-hospitalizations.”
HeLP has led efforts to standardize physicians’ prescriptions, provide clear instructions, and eliminate the use of Latin abbreviations. Providers sometimes fail to give patients simple information like a medication’s name, says Stacy Bailey, PhD, MPH, assistant professor of medicine and associate director of the center.
Further, the typewritten instructions stapled to the bag from the pharmacy are often “written with a lot of jargon and dense text that people aren’t going to understand—or even read,” adds Elizabeth Wilson, PhD, an assistant professor of research. Wolf and colleagues supported the redesign of medication information for Target Corporation, as part of their ClearRx initiative.
Expanding on this work, Dr. Bailey’s research has focused on improving the quality of translation services in pharmacies and clinical practices. “A lot of pharmacies can’t provide instructions in languages other than English,” she says, and “certainly after Spanish, the languages drop off quickly.”
Over-the-counter (OTC) medications also pose unique challenges. HeLP is currently working with McNeil Consumer Healthcare (makers of Tylenol) to improve product labeling and prevent overdose.
“OTC drugs can be particularly harmful because you do not need an intermediary, such as a doctor or pharmacist, to access them,” explains Dr. Wolf. Acetaminophen overdose has been identified as the No. 1 cause of acute liver failure in the U.S., and part of the problem may be that not everyone is aware of the active ingredients. As a result, they may “double-dip” and take two medicines that contain acetaminophen.
Beyond medication use, HeLP’s work promotes the full array of patient behaviors associated with chronic disease management. Working with the American College of Physicians and its Foundation, HeLP faculty led a national clinical trial aimed at hard-wiring diabetes education and action planning into the care delivery models of federally qualified health centers. Dr. Wolf’s team is partnering with faculty at Mt. Sinai Hospital in Chicago on two ongoing cohort studies examining how well elderly patients can manage conditions such as asthma and chronic obstructive pulmonary disease.
Dr. Wilson has led research efforts to apply basic cognitive science principles to facilitate learning the ‘need-to-know’ aspects of managing a disease. To simplify the patient healthcare interface in yet another way, she optimized the use of brief asthma video education (known as “Asthma 1-2-3″), narrated by First Lady Michelle Obama, to convey basic self-care concepts, particularly targeting African American families who are adversely affected by poorer asthma outcomes.
Previous studies have found that learning new procedures, such as using an asthma inhaler and spacer, may be easier with video. She cites one example that examined how much patients learn from printed (text and photo) instructions versus videos and found that it depends on the type of information being conveyed. Factual information can be easily conveyed either way.
Pass it on
HeLP has spread the word about its work through conferences and research partnerships. More than 600 researchers attended two HeLP-sponsored international symposiums at Northwestern in October 2011, including the International Conference for Communication in Healthcare and the NIH’s Health Literacy Annual Research Conference. “This was a nice showcase of Northwestern, and specifically, research from our Division of General Internal Medicine and Institute for Healthcare Studies that has advanced the field,” Wolf says.
Last year, Dr. Wolf was able to bring the work at Northwestern to the international stage. His Fulbright scholarship took him to nine academic institutions in the U.K., and the World Health Organization, to build collaborations and form a unified research agenda. This has led to a successful, ongoing student exchange between Northwestern and the University College London and the University of Southampton.
“HeLP has been one of our biggest success stories,” says Dr. Baker. “Dr. Wolf has taken this to something that’s entirely unique in the United States, something that gets to the whole issue of how and what patients need to learn—the redesign of patient education materials and prescription labels—how you design them to avoid fairly predictable errors.”