? Technical Data Core Health-system embedded pragmatic clinical trials (ePCT) that address the needs of people with dementia (PWD) and their caregivers (CGs) are critical for developing and disseminating evidence-based, non-pharmacological interventions. A key element of ePCTs is to use data derived from and integrated with the health system workflow in the design, conduct, and dissemination of interventions. Central to the establishment of National Institute on Aging (NIA) Alzheimer's disease (AD)/AD-related dementia (AD/ADRD) Healthcare Systems (HCS) Collaboratory, the Technical Data Core (TDC) will develop methods, tools, and data strategies that enable efficient use of electronic health records (EHRs), administrative data and other sources of information to accelerate the conduct of ePCTs in PWD and their CGs in partnership with the HCSs that serve them. To do so, the TDC core will conduct the foundational work needed to establish the methods that identify participants and measure outcomes, provide technical assistance to implement those methods and monitor pilot progress, and provide aggregated information about sites of care and geographic areas to assist in selection of pilot sites and dissemination. The methods and tools developed in this Core will have broad applicability for future full-scale ePCTs conducted with HCS that test interventions aimed at improving the care and outcomes for PWD and their CGs. The TDC will be led Dr. Julie Bynum, Professor of Medicine in Geriatrics and Palliative Care at the University of Michigan, an expert in the study of health system quality, processes and outcomes when caring for older adults, with a specific focus on AD/ADRD. Dr. Bynum will be supported by five exceptional Executive Committee members, who bring critical expertise in: natural language processing and informatics, complex data sharing, experience with data needs of AD/ADRD ePCTs, healthcare information systems in complex illness, and the NIH HCS Collaboratory?s Distributed Research Network.
The Aims of the TDC are:
Aim 1 : To develop and disseminate standardized and valid algorithms to identify and characterize PWD, from EHRs, registries and administrative datasets (e.g., Medicare claims, Minimum Data Set) and their CGs;
Aim 2 : To develop and disseminate standardized and valid data algorithms that capture relevant health outcomes of PWD and their CGs;
Aim 3 : To provide technical assistance to Collaboratory pilot project leaders and career development awardees, as well as NIA-funded investigators conducting ePCTs in PWD;
and Aim 4 : To enable access to remote enclaves of sensitive data (e.g., EHRs, private claims records). IMPACT: A successful TDC is essential to enable ePCTs by improving efficiency of participant identification and outcome measurement, and to provide information that supports selection of sites for pilot studies and for ultimate dissemination of ePCT across HCS. The methods and tools developed in this Core will have broad applicability for future full-scale ePCTs conducted with HCS that test interventions aimed at improving the quality of care and outcomes for PWD and their CGs.
