It wasn't long after the primary-care focused Rio Grande Valley Health Alliance in McAllen, Texas, was formed in 2013 that it became apparent the accountable care organization's patients had trouble talking with physicians about their health during office visits.
Part of the problem was language related—most of the ACO's 7,500 patients in the southern Texas border town speak English as a second language. But a bigger challenge was the intimidation patients felt when they were meeting a doctor in the clinic was limiting their understanding of their health and how to improve or maintain it.
“We knew that our patients were sometimes willing to just say 'yes, I understand,' or they were reluctant to really show that they didn't understand certain aspects of their care,” said Victoria Farias, program administrator at Rio Grande Valley.
It was a problem with serious potential consequences. Many of the patients within the ACO are on Medicaid and considered to be high-risk, high-cost patients with high incidence of end-stage renal disease and diabetes.
The challenges Rio Grande Valley has encountered in educating its patients about their health is indicative of what many healthcare providers across the country are facing as the industry plays catch-up in recognizing the importance of having a health-literate patient population. Yet only an estimated 12% of individuals in the U.S. are considered to have a proficient level of literacy to effectively manage their health and prevent disease.
“Someone who has low health literacy usually has been demonstrated to have poorer health outcomes and their costs, because of higher utilization and later utilization of the healthcare system, is much higher,” said Pamela Cipriano, president of the American Nurses Association.
Health literacy, defined by HHS as having the “capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions,” is associated with lower rates of preventable hospitalizations and emergency department visits, better management of chronic conditions, and lower healthcare costs.
For years hospitals were not given an incentive financially to promote health literacy since doing so under the traditional fee-for-service reimbursement model would have resulted in less use of healthcare services and lower revenue. As more providers shift toward valued-based pay models, greater recognition is being given to the importance of promoting health literacy as a means of reducing and controlling costs.
“When hospitals were being paid to fix their mistakes, the lack of health literacy was a profit generator,” said Michael Abrams, managing partner at healthcare consulting firm Numerof & Associates. “Hospitals did not, by and large, own the issue.”
Estimates of the cost of low literacy indicate the problem is only growing. According to the National Institutes of Health, low health literacy cost the U.S. healthcare system between $106 billion and $238 billion in 2003, accounting for as much as 17% of all personal healthcare expenses. By 2015, the estimated cost of low health literacy was estimated at between $1.6 trillion and $3.6 trillion, according to researchers at George Washington University.
“If we ask 'is there a business case for health literacy?' there is,” Cipriano said. “That shouldn't be the compelling reason, but I believe it is one that really has been able to demonstrate value.”
Farias said the lack of effective dialogue has hindered efforts to educate patients on ways they could better manage their conditions, which led to more frequent visits to the doctor's office, more healthcare services being performed, and higher costs.
Rio Grande Valley decided to try a different approach toward educating its patients. Leaders hired four care coordinators to schedule home visits with the high-risk patients who make up 10% of the total population they serve but account for half of all healthcare costs.
In the more relaxed setting of their home, Farias said patients began feeling more at ease and shared details with coordinators about difficulties they were having with taking their medications, care access, or problems they might have been having with a specialist.
“Sometimes they really don't want to ask for help, and we're trying to break down those barriers and let them know it's OK to ask for help,” she said.
But despite the growth in awareness and the efforts of a few providers, critics argue most hospitals have not made much progress in promoting health literacy among their patients, and some don't believe it's a financial slam-dunk to do so.
“Honestly, there isn't a business case for a hospital to do it,” said Dr. Andrew Snyder, chief medical officer at healthcare consulting firm Evolent Health. “What I think hospitals consider to be helping with patient literacy is more along the lines of patient engagement, which for hospitals amounts to marketing.”
Educating or marketing?
Few would dispute that one of the goals of helping patients become more health literate is for them to become more engaged in their health, which leads them to make more informed medical decisions.
But Snyder said hospitals oftentimes seek patient engagement for the purpose of keeping them loyal to their brand. He said many of the materials hospitals provide are often too confusing and hard for patients to find, requiring them to go to different sites to learn about their health conditions. He said a better system would be to take a more coordinated approach toward health literacy by creating a platform that provides patients with a single access point to find all the relevant information they need.
“A simple place that brings together the patient's literacy format would vastly improve the use,” Snyder said.
But easier access to education resources is only one of several challenges that continue to hinder providers from promoting better patient involvement in their healthcare. A number of hospitals are discovering that the effort to make patients more health-literate often depends on the relationship established with a physician. Yet many providers aren't sufficiently trained in strategies that will encourage patients to become more engaged for the purpose of becoming a shared partner in managing their care.
Attempting to bridge the gap has been the focus of a project developed over the past year at UPMC to create a center for shared decision-making to address gaps in clinician training when it comes to engaging patients.
The concept was adopted from a model first developed by Dartmouth College in 2014, according to Amy Ranier, senior director of patient experience at the University of Pittsburgh Medical Center, who said the purpose is to help providers learn how to reframe the patient-doctor conversation to focus on their quality-of-life issues.
“The concept of the patient not just engaged in the options but also getting to say what's important to them in terms of their outcomes is novel,” Ranier said. “That's not how the health system runs.”
Ranier said shared decision-making requires a high level of health literacy among patients, which in turn requires the hospital to do more in its education effort than simply distributing pamphlets.
UPMC employs a screening tool to review all information to make sure that it is written in a way that is understandable before it is sent out to a patient.
Much of the information is transmitted through the system's patient portal, MyUPMC. Dr. Glenn Updike, medical director for the portal, said the organization has seen an increase in the number of patients who reported reading their messages and reviewing their online after-visit summaries.
Updike said such efforts can help patients better understand their health information, but acknowledged it was difficult to measure the efficacy of their work in terms of whether their initiatives were making patients more engaged, and whether that engagement led to better self-management and improved health outcomes.
Many healthcare providers that have just begun their health literacy promotion efforts don't know what, if any, impact they will ultimately have on their patients' health outcomes. But a number of stakeholders have seen their work produce results.
Dr. Dennis Weaver, chief clinical officer at New York-based insurer Oscar Health, said the company has found success in achieving high levels of member engagement by offering members free access to Oscar's telemedicine service for the past several years.
Each member upon enrolling into a health plan is assigned to a personalized concierge team that answers questions about their health insurance and helps schedule provider appointments.
Weaver said 62% of Oscar members reached out on a monthly basis with questions about their health over the course of the third fiscal quarter of this year. Weaver said the high level of engagement the company sees through its technology provides an opportunity to educate patients through consultations with the concierge team.
“We don't even call it healthcare literacy,” Weaver said. “We do things every day that are at a very consumer-focused level and we do it not really using the language of healthcare literacy but rather at their level.”
Weaver said a key point is interacting with members on their terms, which means not overwhelming a patient with too much information while always being ready to answer questions.
The more personalized approach toward the dissemination of health information is an approach Kaiser Permanente has begun to employ as part of the system's health literacy effort in recent years.
Dr. Stephen Tarnoff, president and executive medical director of Kaiser's medical group in Washington state, said leveraging information from the system's electronic health record has been key in helping patients make more informed decisions. He said clinicians engage in what he called a “robust shared decision-making” process with patients any time there is a question about the best course of action.
Kaiser also uses several patient “decision aids” to assist patients in weighing their care options. They include brochures, DVDs and online interactive tools.
A study on the efficacy of such tools by Kaiser Permanente in 2012 looked at whether they had an effect on the rates of surgeries performed and their outcomes. The study found the introduction of the decision aids led to a 26% decrease in total knee replacements and 38% fewer total hip replacements.
“We find that we have a lot more satisfied patients with fewer complications,” Tarnoff said.
Movement as a country toward improving health literacy has been slow. Numerof's Abrams said the lack of a centralized effort on the part of the federal government to address low health literacy is somewhat surprising given that HHS recognized it as a major problem back in 2010 when it released a National Action Plan.
He said much of the effort to improve health literacy is still done by not-for-profit advocacy organizations, which he said were limited in their scope. He said hospitals in general have been late in addressing the issue of health literacy, until it became apparent the issue was driving up costs.
But he noted there are signs of a cultural shift as more hospitals take on value-based risk for providing care and younger clinicians who are more open to the idea of educating patients step into the field.
“This is a cultural thing, and cultures change slowly,” Abrams said. “It's a process that takes time.”