Understanding and Honoring Patients with Multiple Chronic Conditions

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DESCRIPTION (provided by applicant): Current systems of care are not meeting the needs of older patients with multiple chronic health conditions. These patients receive more conflicting medical advice, and experience worse quality of life, more physical disability, more adverse drug events, and higher mortality than those without multimorbidity. Patients with multiple chronic conditions often face competing and conflicting health demands: for example, a person with diabetes may get advice to exercise but pain from arthritis or shortness of breath from lung disease can limit activity. To get the best care, patients with several chronic illnesses must communicate what is most important to them to their doctors and other healthcare providers, and doctors must understand and support patients' priorities for care. Unfortunately, we often do not talk to patients about their priorities or make them a part of care. We need care plans that include patients' priorities and tools for sharing them with all caregivers. But first, we must understand what shapes the priorities of patients with multiple chronic conditions and how these priorities can be supported by healthcare providers. In this project, experts in chronic disease care, health information technology, and participatory design methods will first study how patients with multiple chronic conditions understand and set priorities for care. The results will be used in a design process in which patients, their family caregivers, and their healthcare providers will develop a prototype interactive priority plan to be shared between patients and providers. The project focuses on patients with diabetes, who have some combination of osteoarthritis, coronary artery disease and depression. Based on increasing national implementation of meaningful use requirements, we envision the documentation and communication of a patient's priorities to eventually be integrated within an electronic health record shared between patients and healthcare providers. Our study, however, will establish when paper, telephone and in-person communications are needed to ensure common understanding and ongoing communication between patients and providers. We will also evaluate our novel use of participatory design methods to inform their potential wider use in projects that improve chronic care. Our project will help patients, caregivers, and doctors manage complex personal health information, and guide information technology developers on the design elements that are important for incorporating patient priorities into electronic health records.