Data Capacity for Patient-centered Outcomes Research for People with Multiple Chronic Conditions
More than 25% of Americans have multiple chronic conditions (MCC), accounting for more than 65% of U.S. health care spending. These individuals have complex health needs handled by diverse providers, across multiple settings of care. As a result, their care is often fragmented, poorly coordinated and inefficient, making data aggregation particularly important and challenging for people with MCC. Development of electronic (e-)care plans based on structured data has been proposed as a method for enabling electronic systems to pull together and share data elements automatically and dynamically. Such aggregated data would not only provide actionable information to identify and achieve health goals for individuals with MCC, but also would reduce missingness and improve quality of point-of-care data for use in pragmatic research.
Through funding made available from the Department of Health and Human Services’ Patient-Centered Outcomes Research Trust Fund, the NIDDK has partnered with the Agency for Healthcare Research and Quality (AHRQ) on the development and testing of a pilot, interoperable electronic (e-) care plan to facilitate aggregation and sharing of critical patient-centered data across home-, community-, clinic- and research-based settings for persons with MCC, including chronic kidney disease (CKD), type 2 diabetes mellitus (T2DM), cardiovascular disease (CVD), and chronic pain with opioid use disorder (OUD).
The purpose of the workshop is to convene experts from diverse domains—including patient and caregiver experience, primary and specialty care, patient-centered outcomes research, informatics & data science, social determinants of health, health information technology development, geriatrics, long-term services and support, home care, social work, nursing, and care coordination, among others—to:
- Understand the data elements important to the care of people with MCC, including CKD, T2DM, CVD, chronic pain and/or OUD, across settings of care
- Identify, discuss and facilitate collaboration across ongoing work relevant to development of e-care plans for people with MCC
- Discuss challenges and potential solutions relating to electronic exchange of care plan data with regard to privacy, security, patient preferences, and interoperability, among other issues