The Internet and non-profit disease advocacy: An empirical analysis

The rapid advance of the Internet is leading to dramatic changes in information delivery for health care and medicine. In the past, most patients were not direct consumers of medical information but relied on physicians to tell them what they needed to know. The Internet is changing this custom.; Among those providing health-related content on the Internet are non-profit organizations whose mission involves advocacy for disease-specific conditions. The Internet allows these organizations to expand their activities with increased efficiency and a host of tools to connect stakeholders.; The purpose of this study is to analyze how disease-specific, non-profit health advocacy organizations are using Internet Web sites and what effects these activities have on the way they perform their mission. The Web sites selected consists of 27 major disease-specific non-profit organizations. The data set includes: (1) Type of information content. (2) Web site interactivity and community building and (3) Web site attempts to empower the patient.; The Internet has revolutionized the way non-profit disease advocacy organizations achieve their mission. However, some have not fully integrated their use of the web beyond a Web presence for general information about their grants and research endeavors. To a few organizations, the Web seemed merely an extension of what they already did with little else besides patient tracts and basic medical education. About half (56 percent) have some content that might empower patients with information to make more informed medical decisions. Nearly three-quarters (74 percent) provide information on clinical trials.; Indeed, most of the organizations used the Internet to expand the amount and type of information provided to include more resources, and to attract a more diverse group of stakeholders. About two-thirds of Web sites utilize some type of interactive group. The Internet also allowed the organizations to connect stakeholders. All the Web sites had e-mail, phone and fax numbers available for stakeholders.