Abstract
Objective: There is a knowledge gap between the capabilities of advocacy groups and healthcare providers (HCPs) and patients. The need to create awareness about valuable resources, available through not-for-profit organizations, for HCPs, patients, and caregivers led to the creation of the “Advocacy Connector” (www.advocacyconnector.com). This web-based resource links patients and HCPs to a variety of advocacy groups that serve to address a host of patient needs (e.g. emotional, educational and financial support). This resource will focus on the area of immunology, oncology, and a rare disorder, Castleman’s disease. This resource has been recognized as a valuable resource for HCP and their practices. Simply providing the Advocacy Connector link (www.advocacyconnector.com) to patients had generated valuable discussion regarding some of the needs, gaps, and challenges that patients experience as they embark on their cancer journey. Methods: Not-for-profit state and national level advocacy groups focusing on services directed towards patients across the United States were given a survey to complete. Information regarding state-level advocacy groups was gleaned from all 50 states. Initially, individuals within the groups were asked if they would participate in an on-line resource that would highlight the capabilities of their respective organizations. The advocacy groups identified their key services, the results of which were then reviewed and validated by an independent vendor. Results: The Advocacy Connector is a compilation of information from both state and national level advocacy groups, specifically focused on immunology and the following cancer-related diseases: prostate, ovarian, breast, colorectal, lung, leukemia, lymphomas, melanoma, myeloma, pancreatic, sarcoma, Waldenström’s macroglobuemia, and a rare disorder, Castleman’s disease. Advocacy Connector is organized so that patients and HCPs can easily access information about each advocacy group according to the type of services they provide for each type of cancer. Available information includes: help-lines, alternative and complementary therapies, research, caregiver support, clinical trial information, counseling, end-of-life care, financial assistance, legal/insurance assistance, men’s health, pain management and palliative care, screening and early detection, spiritual support, survivorship, travel services, veteran services, wellness, nutrition and exercise, women’s health, and young adult cancer support. Materials may be printed for home-use by patients and caregivers. Telephone numbers for the resources are included in the printed information for those who have no access to computers. Information is also available in non-English languages (e.g. Spanish). Conclusion: We believe the Advocacy Connector will help bridge the knowledge gap by increasing awareness of the extent of services offered by oncology advocacy groups and thereby increase patient knowledge, access to services, and overall satisfaction. Metrics have determined an increased need to have capabilities and resources identified for patients and caregivers; the addition of individual state resources has been acknowledged by patients through surveys to be an invaluable additional resource as they search for advocacy organizations within their local areas.
