Proposal Presented for the Master Plan For Aging (#27)
Disclaimer
Throughout the MPA process, more than 100 proposals were developed thanks in particular to thousands of hours of work by external stakeholders and members of the public. These proposals and the MPA Council commentary are being submitted to the Governor and shared with policymakers and the public to inform policymaking. These proposals represent a starting point for discussion. Further discussion is necessary between relevant state agencies and stakeholders to both refine these proposals and assess which may be appropriate to adopt and implement.
Summary
Establish a central repository of HIPAA-compliant cognitive health data to inform policymaking and resource prioritization in support of optimizing value, equity, inclusion and effectiveness of cognitive health promotion and care in NYS. The proposal includes an evaluation of existing data sets and of use cases for the repository.
Justification
Existing data sets about cognitive health are not easily accessible or structured to best support cognitive health promotion and disease prevention across the lifespan. The scope, accuracy, and comprehensiveness of the data sets are limited as they do not provide the necessary information for addressing cognitive health, thereby limiting their usefulness for decision-making, policy planning and development, and care provision. Having a full range of accurate data will support the understanding of the costs, benefits, and effectiveness of existing cognitive health services.
Full Proposal
There are currently multiple community and governmental data sets which are not easily accessible or structures to best support cognitive health promotion and disease prevention across the lifespan or reduction of cognitive disease. These data sets do not provide the full scope of information needed to address cognitive health, and the accuracy and comprehensiveness of the data sets vary, limiting usefulness of some data for decision-making, policy planning, and care provision.
- Establish a central repository of HIPAA-compliant cognitive health data to inform policymaking and resource prioritization in support of optimizing value, equity, inclusion and effectiveness of cognitive health promotion and care in NYS.
- Conduct an initial and ongoing landscape review of existing federal, state and local datasets and systems to create an accessible, comprehensive, data repository to support decision-making specific to cognitive health.
The data can support an understanding of the costs, benefits, and effectiveness of existing services related to cognitive health, provision of a mapping of available services and programs for providers, policy-planners, and consumers, support epidemiological surveillance relevant to cognitive health, understand patterns of health care utilization and cognitive health trends in order to improve healthcare and preparedness planning, support workforce development, and support New York State’s existing initiatives in Dementia care.
MPA Council Commentary
This proposal is categorized as long-term. While a robust collection of available data is critical for the development of informed Statewide governmental decision-making, the collection of data is administratively complex and may require regulatory changes. Proposed first steps for implementation could include an evaluation of existing DOH resources and the accessibility of other data sources. Following this evaluation, DOH can evaluate possible regulatory changes with relevant state agency partners for the continued development of a decision-making framework informed by cognitive health data.