What I learned from my online stroke education
Online stroke education is a huge area of potential for improvement in this country, but a lack of transparency and accountability is hindering the progress of stroke victims, according to a new report.
According to the National Institute of Stroke and Headache, nearly 1.1 million Americans suffer from a stroke each year, with nearly 80% of them in rural areas.
“We are seeing the first steps towards making online education available to all stroke victims and stroke survivors, but there’s still a long way to go in improving accessibility and quality,” said Julie Schlosser, a clinical nurse and chair of the National Stroke Prevention Committee, a group of stroke survivors who co-authored the study.
“As stroke survivors face higher levels of health care costs and lack of adequate access to healthcare, we want to make online education accessible to all strokes survivors as quickly as possible.”
The study was led by researchers at the University of Pennsylvania, the University at Buffalo, the National Institutes of Health, the New York State Department of Health and the Pennsylvania Health Care Foundation.
The researchers analyzed data from the National Electronic Health Record (NEHR), a nationwide health record system that collects information about patient visits and appointments.
The data showed that the stroke prevention program that the researchers studied had a relatively small patient base, but it had the most patients in its network.
“The NEHR’s online patient pool includes those with a stroke, as well as those who have a stroke and those who are hospitalized,” Schlossers said.
“While we know from past studies that people who have strokes are more likely to seek treatment and those with stroke are more affected by their disease, we didn’t know how many people in the community are using the system to obtain and receive care.”
The researchers also looked at how well the stroke education program met some of the criteria for inclusion in the National Center for Health Statistics’ Stroke Surveillance System, which monitors the progress in stroke care and rehabilitation in the U.S.
As of December 31, 2015, the stroke program had more than 1,600 patients, or 9.3% of the total number of patients.
In comparison, the average number of visits a stroke victim received during the same period was 1,098.
The researchers found that the average patient in the program had about $1,800 in medical bills paid.
“Many people are not able to pay the bills because they don’t have the means to pay for their treatment,” Schlosers said, adding that the amount spent on health care expenses has tripled since 2008, and that “it has reached a point where a lot of people are paying for the same type of care that they received.”
“This study shows that stroke prevention programs can be very effective in improving the quality of care provided to stroke survivors and stroke victims,” said Paul Fischler, a research fellow at the National Heart, Lung, and Blood Institute and lead author of the study published online in the journal Stroke.
“The program’s unique combination of online educational materials and training is ideal for the community to learn and be empowered to make their own decisions about what to do with their stroke care.”
“Our goal is to give stroke survivors the knowledge they need to manage their illness effectively and to manage the recovery,” said co-author Julie Littrell, a researcher at the Penn State School of Nursing.
“This study helps us understand the role of stroke prevention and stroke education in stroke recovery.”
In addition to the stroke programs, the researchers looked at the use of online education for other diseases as well, including hypertension, obesity and asthma.
The study found that more than 3.5 million people in a wide range of age groups in the United States received online education.
“Online education is critical for stroke survivors to make informed decisions about their care and to learn how to manage and improve their health,” said lead author Jessica P. Mather, an assistant professor in the Penn Stony Brook College of Public Health.
“There are many factors that affect the ability of a person to manage a stroke such as their socioeconomic status, medical history, type of health, and other health conditions, and online education is an important part of these decision-making processes.”
The findings from the study were published in the American Journal of Public Healthcare on January 15.
The full study can be read online at the American Stroke Association website.