A Partnership to Enhance Research Related to the Management of Chronic Disease

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DESCRIPTION (as provided by applicant): Using a participatory research process, Advocacy for Patients with Chronic Illness Inc, 12 Patient Partners, and the Center for Managing Chronic Disease will conduct a survey of 1500 patients currently managing digestive, neurological or rheumatological (excluding arthritis) conditions. The aim of the survey is to identify the commonalities in a) the social, behavioral, economic and clinical challenges in day to day management by patients across these conditions; b) the importance and value that patients place on NIH-type research (biological, behavioral, clinical) and how they believe such research can help them; and c) the ways in which interventions and communications directed to them could be enhanced to be more accessible, informative and helpful. A model of self regulation combined with the direct day to day experience of the patient partners will guide the development of research instruments and implementation of the survey. Although considerable information about self management by patients with heart, cancer, respiratory disease, arthritis and diabetes is available, very little exploration of management tasks by patients with the targeted conditions is available. Findings from the study are expected to inform the efforts of clinicians and voluntary groups assisting such patients and to lead to the development of self management intervention to assist them. Individuals and their families face significant social, behavioral, economic and clinical challenges in managing a chronic condition and little is known about the commonalities in these challenges across digestive, neurological, and rheumatological (excluding arthritis) diseases. How patients find out about and value research related to these diseases is also not well understood. This participatory research will identify the common patient management challenges and how research and interventions can be made more accessible, informative, and helpful to patients among 1500 people managing the target conditions.