REDMOND, Wash., Oct. 26, 2007—New research released this week shows that technology plays a vital role in helping many people with multiple sclerosis (MS) manage and live with their disease, yet relatively few are using accessible technologies that could help them overcome many of the visual, dexterity, mobility and cognitive challenges brought on by MS.
The research study, titled Staying Connected: An Investigation of How Technology Affects People Living with MS, was commissioned by the MS Technology Collaborative, an alliance that includes Microsoft, the National Multiple Sclerosis Society (NMSS), and Bayer HealthCare Pharmaceuticals. StrategyOne, an applied-research consulting firm, conducted a telephone and online survey of 2,390 American adults with MS.
According to the research study—the most comprehensive examination ever of how people with MS use technology in their personal and professional lives—70 percent of respondents say they are interested in using and keeping up with the latest technology, and nearly half agreed that technology plays a vital role in helping them live with MS. People with more severe types of MS, or those whose symptoms are more pronounced, place an even higher value on using technology to help them cope with their disease.
Yet, despite the strong interest and belief in technology among people with MS, few actually use accessible technology to help mitigate their symptoms and make everyday tasks easier. The study found that while people with MS have heard of accessible technology, they need better information about how accessible technology can specifically help them address their MS symptoms. Thirty-three percent of those surveyed say they have trouble typing on a standard computer keyboard, for example, but only 5 percent say they have turned to technology for a solution, such as using an alternative keyboard or a voice recognition program. Similarly, 30 percent say they have trouble reading text on a standard screen, but only 6 percent have made adjustments to their computer settings, such as increasing font sizes or using screen magnifiers.
MS is an unpredictable neurological disease that affects approximately 400,000 people in the United States, with a new case diagnosed every hour. Symptoms may include fatigue, vision problems, tingling or numbness, poor balance, loss of coordination, trouble walking, or memory lapses. Yet, each case of MS is different: symptoms can be permanent or may come and go without warning. While there is no cure for MS, early treatment can help slow its progression, and technology can make it easier for many people with MS to stay employed, live more independently, and enjoy a broader range of life choices.
“At Microsoft, we are dedicated to creating technology that adjusts to individuals’ needs as they change over the course of a day, a year, a lifespan – including those with MS or any other type of condition,” says Rob Sinclair, director of the Accessibility Business Unit at Microsoft. “We believe that technology will help people with MS maximize their abilities, even as those abilities change.”
Most People with MS Use Technology
Today, more and more people are using technology to enhance their lives, and people with MS are no exception. Like everyone else, people living with MS use their computers and the Internet to exchange e-mail, research topics that interest them, shop online, keep up on the news, manage their finances, play games, and download music and videos.
They also use technology to manage and learn more about their disease. Nearly three-quarters have used technology or the Internet to help manage their MS treatment regimen, which includes looking up information about new medications and side effects, finding out about new treatment options, and conducting research before selecting medications. In addition, more than half say that the Internet helps them to be their own advocate concerning their MS.
Clearly, fear of technology is not preventing people with MS from taking advantage of accessible technologies that could help them overcome many of their symptoms. According to the study, nearly all people with MS use computers and the Internet (93 percent for both) and cell phones (91 percent), which is significantly higher than usage in the general U.S. adult population. According to the Simmons National Consumer Survey in Spring 2006, for example, 80 percent of U.S. adults use computers, 75 percent use the Internet, and 69 percent use cell phones.
The study found that most people with MS are quite comfortable using technology. In fact, 49 percent say that their use of technology has increased since they were diagnosed with MS, while only 12 percent say they now use technology less than before.
Accessible Technology on the Job
The study also reinforced the potential value of technology in pursuing and maintaining a professional career—especially to people with MS. Forty-nine percent of the people with MS who responded to the survey are currently employed, and nearly 40 percent of those say technology makes it possible for them to keep working with their disease. That number is highest among people with more severe MS symptoms.
At some point during their careers, nearly half (44 percent) of the survey respondents have had to change their employment status as a result of MS symptoms, whether switching from full-time to part-time work or leaving their jobs altogether. Yet very few of those who faced this difficult choice took advantage of technology adaptations that might have given them the choice to remain in the workforce. Only 12 percent asked their employers for more ergonomic equipment, tools and furniture, and just 5 percent requested changes to the technology they were using.
Unfortunately, most people with MS are not taking advantage of accessible technology to address these and other challenges. Far more people in the research study report facing an MS-related challenge than the number who report making some kind of technology adaptation to overcome one. Even among people with more severe MS symptoms, very few have made adaptations to address their challenges.
“Considering the high unemployment rate among people with multiple sclerosis, it is essential that people understand the potential benefits of accessible technology,” Sinclair says. “The decision to stop working or reduce work hours is a very personal one, but those who are able to keep working with the help of accessible technology should not have to leave their jobs before they are ready to make that choice.”
Better Information is the Answer
People with MS are aware of accessible technology; they just aren’t using it. According to the study, 77 percent of people with MS say they have heard of at least one type of accessible technology, but only 39 percent have ever used an accessible technology product. And only 23 percent say they have ever made changes to a computer—adjusting settings, adding new software, acquiring a more accessible version of the technology—to help them manage an MS-related challenge.
The research found that “better information” is the number one thing that would empower people with MS to take advantage of accessible technology. More than half of the respondents (56 percent) say that it would be easier to make changes if they had better information about the tools and resources available to them.
Some of the other research findings further underscore the need to provide better information about accessible technology within the MS community. Forty-eight percent of those surveyed cited affordability as a potential barrier to using technology to manage their MS more effectively, even though many adaptive technologies are actually standard features in most computers. As an example, Windows Vista, the newest operating system from Microsoft, provides many easy-to-use accessibility settings that include screen magnification, speech recognition, and many other helpful features. The new Ease of Access Center in Windows Vista makes it easy to find and turn on accessibility features and provides personalized recommendations.
To help people with MS learn more about accessible technology and related resources, the MS Technology Collaborative has put together a Web site called MyMSMyWay.com. The group also launched a personalized, interactive, Web-based program called “Snapshot,” which is intended to show people with MS how technology can adapt to their changing needs and help them use it to achieve their goals. In addition, Microsoft provides extensive information about accessible technology on its corporate Web site.
“This research confirms that technology can make a critical difference in the lives of people with multiple sclerosis, helping them stay connected to their communities, and enabling them to make informed treatment and lifestyle decisions,” Sinclair says. “As we continue to work to meet the needs of people living with MS, the lessons we learn will enable us to help make technology accessible to everyone.”