InfoSage Information Sharing Across Generations and Environments (Massachusetts)

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Summary:

As individuals age, they may experience a reduction in cognitive function with a resultant need to transfer at least some control of their personal health information and decision making to others. As the aging process advances, family members typically support elders to maintain their independence for as long as possible by promoting healthy behaviors and providing health-related information. This support is often provided at a distance, making information sharing important but difficult.

The research team developed an online platform, Information Sharing Across Generations and Environments (InfoSAGE), for elders over 75 years and their family members to connect, communicate with one another, and collaborate around health and healthcare. InfoSAGE is freely available to the public at https://www.infosagehealth.org/app/#/ and includes the following features: search function, information resources, calendar, shared task list, medication list, networking function, and a microblog.

The specific aims of the research were as follows:

  • Identify the information needs and decisionmaking dynamics of elders and those helping to care for them.
  • 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 healthcare decision making and care transitions. 
  • Evaluate the extent to which InfoSAGE improves communication, coordination, and collaboration for elders and their family. 

The development of InfoSAGE was informed by 10 facilitated focus groups: 5 with elders living in senior housing facilities and 5 with family members. A longitudinal study of InfoSAGE was conducted with seniors and their family caregivers recruited from two senior care facilities in Massachusetts. Recruitment was more difficult than anticipated, likely because proposed users were already communicating with family members with email, phone, text message, and in-person visits.

During the focus groups, participants indicated they would be supportive of the ability to share information. Elders exhibited reticence and mild distrust with sharing medical information online, despite their knowledge of InfoSAGE’ s privacy and security controls. Actual usage of the platform increased over time. During acute medical needs, usage improved if the user was already familiar with the platform. Information needs were found to vary over time, increasing and decreasing depending on current health needs of the elder. The amount of information elders shared with family members did not remain static; instead, they shared more information during illness than during periods of relative wellness. The researchers noted the importance of shared patient portals to accommodate the ability of seniors to change the level of information sharing depending on their current clinical circumstance.

This research demonstrated the feasibility of an online platform to facilitate information exchange and care coordination between those over 75 years of age and their families and caregivers. Applications such as InfoSAGE have the potential to increase quality of life by improving access to information, improving the ability to communicate, and reducing isolation of elders by connecting them to their families and support networks.

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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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