ABSTRACT
Improving the prevention, detection, and treatment of Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) across racial, ethnic, and other diverse populations is a national priority. To this end, this paper proposes the development of the Standard Health Record for Dementia (SHRD, pronounced "shared") for collecting and sharing AD/ADRD real-world data (RWD). SHRD would replace the current unstandardized, fragmented, or missing state of key RWD with an open source, consensus-based, and interoperable common data standard. This paper describes how SHRD could leverage the best practices of the Minimal Common Oncology Data Elements (mCODETM) initiative to advance prevention, detection, and treatment; gain adoption by clinicians and electronic health record (EHR) vendors; and establish sustainable business and governance models. It describes a range of potential use cases to advance equity, including strengthening public health surveillance by facilitating AD/ADRD registry reporting; improving case detection and staging; and diversifying participation in clinical trials.
Subject(s)
Alzheimer Disease , Health Equity , Alzheimer Disease/diagnosis , Alzheimer Disease/prevention & control , Electronic Health Records , HumansABSTRACT
This study used a focus group methodology to examine how Medicare beneficiaries reacted to messages on specific kinds of preventive action, including those adopted by public and private section health organizations. Beneficiaries were asked to rank the messages on their own, and then to discuss their rankings in focus groups. The best-received messages advocated a collaborative patient-provider relationship. They also specified which actions to take, and how to implement them. The authors conclude that public health campaigns to reduce errors need not undermine trust in providers.
Subject(s)
Attitude to Health , Consumer Behavior , Information Services , Medical Errors/prevention & control , Medicare/standards , Physician-Patient Relations , Aged , Communication , Consumer Advocacy , Focus Groups , Health Services Research , Humans , Managed Care Programs/standards , Social Marketing , Trust , United StatesABSTRACT
People enrolled in Medicare often turn to family members and friends for help in making health decisions, including Medicare health plan choices. To learn how family members and friends participate in decisionmaking, what information they currently use, and what information they would like, we held eight focus groups in San Diego and Baltimore. Although responses were different in the two markets, participants in both cities reported receiving inadequate information and indicated they were largely unaware of available CMS-supported information. Beneficiaries want easy-to-use print materials targeted to their needs and opportunities to participate in seminars and receive personal counseling.
