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.

Public Health Relevance

Patients with more than one chronic condition have complicated daily care plans that involve many choices about care and treatment. These plans should include patients' priorities for care. We don't understand, though, what motivates the priorities of patients with multiple chronic conditions, how patients can best communicate their goals to their healthcare teams, or how health information technology could provide support. We will use participatory design methods-with patients and doctors working together-to understand patients' needs, preferences and capabilities for an interactive care priority plan shared between patients and healthcare providers. We will study if these participatory design methods will work for other projects to improve chronic care. Our results will help ensure healthcare technology is centered on patients' priorities.

Agency
National Institute of Health (NIH)
Institute
Agency for Healthcare Research and Quality (AHRQ)
Type
Research Project (R01)
Project #
5R01HS022364-03
Application #
9133328
Study Section
Health Care Technology and Decision Science (HTDS)
Program Officer
AL-Showk, Shafa
Project Start
2014-09-01
Project End
2017-08-31
Budget Start
2016-09-01
Budget End
2017-08-31
Support Year
3
Fiscal Year
2016
Total Cost
Indirect Cost
Name
Group Health Cooperative
Department
Type
DUNS #
078198520
City
Seattle
State
WA
Country
United States
Zip Code
98101
Berry, Andrew B L; Lim, Catherine; Hartzler, Andrea L et al. (2017) Eliciting Values of Patients with Multiple Chronic Conditions: Evaluation of a Patient-centered Framework. AMIA Annu Symp Proc 2017:430-439
Lim, Catherine Y; Berry, Andrew B L; Hirsch, Tad et al. (2017) Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients' Perspectives. J Gen Intern Med 32:1278-1284
Berry, Andrew B L; Lim, Catherine; Hartzler, Andrea L et al. (2017) Creating Conditions for Patients' Values to Emerge in Clinical Conversations: Perspectives of Health Care Team Members. DIS (Des Interact Syst Conf) 2017:1165-1174
Lim, Catherine; Berry, Andrew B L; Hirsch, Tad et al. (2016) ""It just seems outside my health"": How Patients with Chronic Conditions Perceive Communication Boundaries with Providers. DIS (Des Interact Syst Conf) 2016:1172-1184