Using a participatory research process, CMCD investigators worked with Advocacy for Patients with Chronic Illness, Inc. (now known as The Jennifer Jaff Center) and patient partners to analyze the results of a survey of over 1,800 people currently managing digestive, neurological, or rheumatological conditions. The aim of the study was to identify: common themes across conditions in peoples day to day challenges with disease management, the value that patients place on NIH-type research and how they believe such research can help them, and the ways in which interventions and communications directed to people living with these conditions could be made more accessible, informative and helpful. Over the year-long data collection period, approximately 1,500 patients and 300 caregivers participated.
For information about what we learned from this project, contact Shelley Stoll at firstname.lastname@example.org.
Informal Caregivers, Neurological & Digestive Diseases