InfoSage Information Sharing Across Generations and Environments (Massachusetts)

Project Final Report (PDF, 673.81 KB) Disclaimer

Using an online platform to facilitate information exchange and care coordination between those over 75 years of age and their support network is feasible and has the potential to increase quality of life for older adults.

Project Details - Ended

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, 673.81 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. 
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High Tech as High Touch: Using InfoSAGE to Connect Caregivers and Older Adults

COMPLETED RESEARCH – KEY FINDINGS AND IMPACT

Using an online platform to facilitate information exchange and care coordination between those over 75 years of age and their support network is feasible and has the potential to increase quality of life for older adults.

Recognizing the challenges of caring for older adults

As the number of adults over 75 years old increases, there is a growing need for families to assume a caretaking role and assist with their health and social needs. Caregiving can be challenging, as coordinating care is often the responsibility of one family member, and elderly adults may live alone or far from immediate family. To address these challenges, Dr. Charles Safran and his Boston, MA-based research team, including Dr. Yuri Quintana, created a secure, web-based platform for patients and families to communicate, collaborate, and search for curated information and local resources relating to aging.

Sharing knowledge while maintaining privacy Information

Sharing Across Generations and Environments (InfoSAGE) is a free, open-access website and mobile app (https://www.infosagehealth.org/app/#/) designed to share the personal health information and caregiving needs of older adults, called the “keystone,” with their caregivers. The platform includes a search function, information resources, calendar, shared task list, medication list, networking function, and a microblog. Described by Dr. Safran as “a new way to think about how systems are built to support patients and families,” the platform is designed to evolve with the needs of the older adult user as they transition from full independence to family-supported care. In the tool, the keystone decides which caregiver(s) may access the personal information in the platform and can make changes at any time to the amount of access the caregiver has. The research team studied how older adults and their caregivers used the tool and evaluated the extent to which to the platform improved communication, collaboration, and coordination between these two groups.

“It’s easier to introduce technology when you don’t have to use it. The time an elder is having a crisis is the worst time to intervene with the family. It’s better to find opportunities to introduce technology before they are needed, because when they are needed, it’s almost too late.”
– Dr. Safran

When InfoSAGE is needed the most

Dr. Safran found that InfoSAGE is most useful during transitions of care, for example when an elder is acutely ill and is transferred to the hospital. These transitions represent times where the risk of adverse events due to potential miscommunication is greater and is a time of significant vulnerability for patients. The research found the usefulness of InfoSAGE is highest if introduced when the elder is well and being used before it is needed in a medical crisis. By connecting individuals to their families and support networks, applications such as InfoSAGE have the potential to increase quality of life in elders by improving access to information, improving the ability to communicate, and reducing isolation. In future research, Drs. Safran and Quintana will be exploring the right time to introduce these technologies to older adults and families and use of the technology to optimize the patient’s medication regimen.

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