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

Using a participatory research process, Advocacy for Patients with Chronic Illness Inc, 12 Patient Partners, and the Center for Managing Chronic Disease is conducting a survey of 1500 people currently managing digestive, neurological or rheumatological (excluding arthritis) conditions. The aim of the survey is to identify the commonalities in:

1. the social, behavioral, economic and clinical challenges in day to day management by patients across these conditions;
2. the importance and value that patients place on NIH-type research (biological, behavioral, clinical) and how they believe such research can help them;
3. and 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.

Two different versions of the survey are available: patient and family caregiver. Participants can opt to take the survey online or schedule a telephone interview.
The survey, powered by Survey Gizmo, can be accessed at http://chronicdisease.survey.sgizmo.com.

For more information on this project, please contact Shelley C. Stoll, MPH at scstoll@umich.edu.