RESEARCH OBJECTIVES: The purpose of this proposal is to develop a deeper understanding from the patients' perspective of the: (a) commonly experienced social, behavioral, economic, and clinical challenges facing people with digestive, neurological and rheumatological (excluding arthritis) disease in their efforts to manage their conditions effectively; (b) ways in which people with these chronic conditions learn about and perceive that research of the type supported by the NIH (biological, behavioral, clinical) can assist them with their disease management tasks; and (c) ways in which interventions and communication for this population of patients could reflect their experience, understanding and communication channels and, therefore, be more effective in reaching, informing and assisting them. The proposed research will be a community-based participatory project conducted in a partnership between Advocacy for Patients With Chronic Illness, Inc., a 5Oi(c) (3) public charity, an organization with extensive experience working with people with the targeted categories of diseases, and the Center for Managing Chronic Disease at the University of Michigan (""""""""the Center""""""""), an academic organization with extensive experience in conducting community based and participatory research. Specifically it will: 1. Be guided by a group of partner patients with chronic disease from the constituency of Advocacy for Patients With Chronic Illness Inc. (""""""""Advocacy for Patients"""""""") who will participate in the design and implementation of the research and analysis of data to ensure the study reflects the full and particular perspective of patients attempting to manage effectively the range of targeted chronic conditions; 2. Involve recruitment conducted by the staff of Advocacy for Patients. The study will employ both retrospective and prospective procedures to recruit approximately 1,500 patients. The study participants will be clients of Advocacy for Patients with Chronic Illness Inc. currently managing a diagnosed digestive, neurological or rheumatological (excluding arthritis) disease; 3. Survey (conducted by staff of the Center for Managing Chronic Disease) over a period of two years these approximately 1,500 patients who have experienced significant challenges (social, behavioral, economic and clinical) in managing their chronic conditions and who can benefit from the type of research conducted by the NIH; 4. Analyze the resulting qualitative and quantitative data to identify commonalities in the experience of patients related to day to day management of their conditions, their understanding of the contributions of research to their efforts, and perspectives regarding how research, interventions, and communications could reach and assist them more fully.
