One size does not fit all: using qualitative methods to inform the development of an Internet portal for multiple sclerosis patients

Abstract

Disabled and elderly populations are the fastest growing segment of Internet usage. However,these people face an "Inverse Information law"-access to appropriate information is particularly difficult to those who need it the most. Our tertiary care Multiple Sclerosis (MS) center received funding to develop a MS specific patient portal linked to web messaging system so as to empower patients to become more active participants in their health care. In order to design an effective portal, we conducted a qualitative study using focus groups and direct observation techniques. The study explores the perceptions, expectations and interactions of MS patients with the portal and underscores the many challenges MS patients face in getting quality health information on the Internet. Many of the patient barriers were due to inappropriate font sizes, low contrast, cluttering of web page and use of dynamic and flashing objects. Some of these issues are not addressed by Section 508 accessibility guidelines. We believe that any future patient portal or health information website needs to address these issues and educate the patients about accessibility options to enhance utilization and user satisfaction.

Figure 1

A screenshot of the redesigned MCCO system. Other features that were incorporated and not displayed here are the ability to retrieve forgotten passwords and pharmacy details, provision of information on general accessibility options and the ability to navigate using the keyboard alone.