InfoSage Information Sharing Across Generation and Environments (Massachusetts)

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Summary:

Aging creates health care decisionmaking, information management, and communication challenges for older adults and their families. When family members and other informal caretakers take a more active role in an elder’s care and decisionmaking, it can be exceptionally challenging for them to manage the elder’s health care information while respecting the elder’s preferences and priorities. Both older adults and their families need tools to help them navigate this shared responsibility in various care environments, particularly for elderly patients who face diminishing cognitive function and may need to transfer aspects of control of their personal health information and decisionmaking to one or more family members. To facilitate this, an effective information management system must be resilient and adaptive, capable of supporting the evolution of older patients as they transition from a model of full autonomy to one in which they need assistance with: managing their personal health information; making decisions about their care plan; and optimizing their care plan for a realistic set of expectations or goals.

This project will conduct a longitudinal study of the information needs of older adults and families involved in their care by building a ‘living laboratory’ called InfoSAGE – Information Sharing Across Generations and Environments. The study will take place at the Beth Israel Deaconess Medical Center and Hebrew SeniorLife Institute for Aging Research, which is affiliated with Harvard Medical School. InfoSAGE will enable the research team to study real-life situations of older adults and their families’ challenges communicating, coordinating, and collaborating with complex and costly care environments. The goal is to gain an understanding of the health care information ‘ecosystem’ that can support the special needs of the independent elder, yet also be capable of supporting an incremental transition to shared management of information, decisionmaking, and communication.

The specific aims of the project are to:

  • Identify the information needs and decisionmaking dynamics of elders and those helping to care for them, with a particular focus on how needs evolve as they transition from full independence to family-supported care.
  • Create a 'living laboratory' – InfoSAGE – a novel, family-centered information management and collaborative environment that is based on the requirements and needs identified in the first aim.
  • Longitudinally study elder and family collaborative interactions and information management behaviors with InfoSAGE in the context of real health care decisionmaking and care transitions.
  • Evaluate the extent to which InfoSAGE improves communication, coordination, and collaboration for elders and their family.

This study will evaluate the extent to which InfoSAGE improves the patient’s and family’s sense of awareness and control over long-term care plans as well as optimizes overall resource utilization in care transitions. The goal of this work will be to produce a robust model of the health care information management infrastructure needed to meet the growing needs of older adults, their families, and other caretakers, as well as a framework for measuring the impact of consumer information technology on several key outcome variables.

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InfoSage Information Sharing Across Generation and Environments - Final Report

Citation:
Safran C. InfoSage Information Sharing Across Generation and Environments - Final Report. (Prepared by Beth Israel Deaconess Medical Center under Grant No. R01 HS021495). Rockville, MD: Agency for Healthcare Research and Quality, 2019. (PDF, 892 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services. (Persons using assistive technology may not be able to fully access information in this report. For assistance, please contact Corey Mackison).
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