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AMIA Annual Symposium Proceedings logoLink to AMIA Annual Symposium Proceedings
. 2018 Dec 5;2018:932–941.

InfoSAGE: Supporting Elders and Families through Online Family Networks

Yuri QUINTANA 1,2, Darren FAHY 1, Bradley CROTTY 4, Ruchira JAIN 1, Eli KALDANY 1, Maxwel GORENBERG 1, Lewis LIPSITZ 2,3, Diane ENGORN 3, Jorge RODRIGUEZ 1,2, Alex ORFANOS 1, Adarsha BAJRACHARYA 1, Juan HENAO, 1, May ADRA, 1, David SKERRY,, Warner V SLACK 1,2, Charles SAFRAN 1,2
PMCID: PMC6371310  PMID: 30815136

Abstract

With an increasingly elderly population, families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the findings of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families. The InfoSAGE system has 257 registered users; 52 of these opted into an in-depth longitudinal study. A descriptive analysis of these early participants, the online family networks, and barriers to participation that were encountered are presented.

Introduction

A growing proportion of the United States population is over 65 years of age and living longer, with increasing medical care needs. Longevity creates new information and communication needs for both elders and the children who are helping to coordinate their care. Navigating caregiving for families can be challenging because it is time-consuming, care is complex, and respecting the elder’s preferences and priorities are essential.1

The United States is currently experiencing a shift in age demographics, associated with the aging of the baby-boomer generation and an overall increased life expectancy. By 2050, it is expected that those aged 75 years or older will account for 11.0% of the population, up from 5.4% in 2010.2 This older population is projected to strain the healthcare system,3 with an average growth in health expenditure of 5.8% per year, and an estimated 20% of the total economy by 2025. Furthermore, when compared to previous generations at similar ages, baby-boomers experience higher rates of chronic disease.4 Those that cannot afford costly long-term care solutions will necessarily turn to family caregivers to fill the gap, with informal caregiving valued at $450 billion in 2009 alone.5

The burden of caregiving has been well studied in elderly patient populations, but little is known about technologies that can support care coordination for elders and families. Informal caregiving is associated with a high level of stress, poor quality of life, increased strain on family relationships, and burdensome time commitments.6 One study found that the time spent by informal caregivers on family members with moderate dementia could exceed 17 hours per week, reaching up to 41 hours per week in severe dementia.7 Often, informal caregiving falls disproportionately on a single individual, who may act as the coordinator of care in a family structure. The use of communication applications on the Internet, for the care coordination of elders, has the potential to distribute tasks and alleviate stress among family members, although there remain barriers to their usage and adoption.

Caregivers are increasingly utilizing the Internet as a support tool,8,9 making use of social networking,10 support groups,11 and searching for health information.1 Additionally, elders themselves are increasingly overcoming the digital divide, with 58% of seniors over the age of 65 now being online, and 78% employing the Internet to search for disease- or medication-specific information.12 Health-related information is now readily available online, although the quantity of search results raises problems of differentiation, which requires a certain level of health literacy to navigate.13 Internet search results are not regularly examined by users for accuracy, with users often assuming the results are true and up to date.14 One study found that, among those seeking health information, only 14% checked the relevancy of the source.15 Unfortunately, little is known about the use of the Internet or smartphones for those of 75 years and older.

To identify how information needs evolve with the aging process, and the impact on care coordination for families, we created a living laboratory of participants, including people over the age of 75 and their family members, and embarked on a multi-year longitudinal study to examine the feasibility of using online and mobile technologies to support the elderly and their families. The Information Sharing Across Generations (InfoSAGE) system is an online private social network, designed to provide useful features to families for information sharing, communication, and medication management. Here, we present the design of our online platform, an analysis of its adoption and usage by elders and their families, participants and networks, and barriers to participation.

Methods

In the context of the challenges of communication in informal caregiving, we began inviting families to join a ‘living laboratory’ in 2015, to better study the information and communication needs of families, while also aiming to improve the tools available for care management. Our aim was to gain a deep understanding of the healthcare information ‘ecosystem’ that could support the special needs of the independent elderly patient, yet also be capable of supporting an incremental transition to shared management of information, decision-making, and communication. Our focus was on those elderly people over the age of 75, where there was little previous research on, or evaluation of, technologies to support this demographic group. The InfoSAGE study focused on the following specific aims:

  1. To establish the feasibility of the use of an online platform by elders, families, and their caregivers for information exchange and care coordination;

  2. To understand communication patterns between elders and their online care network.

  3. To understand the usability challenges involved in the use of online technologies by elders for information and healthcare coordination; and

To achieve these aims, we designed a longitudinal study, built around an online private social network, created especially for the project. Together, this represented a ‘living laboratory’ of voluntary participants. Families who used the network were further invited to participate in a two-year longitudinal study of their information needs.

InfoSAGE Systems Design

To inform the design of InfoSAGE, we conducted 10 focus groups with people over the age of 75, and people who cared for someone over the age of 75.1 We sought to identify necessary features, and better understand privacy and security concerns. We learned from the qualitative data that families wanted access to health information, such as medical records, but that the more independent and functional elders wished to maintain control over who could access their information, the extent of access, and when. We also learned that Internet searches were overwhelming for many older people, who may have difficulty separating advertising designed to mimic search results from reputable sources.

We had found that social contacts became important sources of information, related to aging, trusted more than the Internet, highlighting the importance of social networks and social capital for health. The Internet was a place where many families turned to find logistical information, but many found it difficult, otherwise, to assess the reliability of the information. Based on the findings, we created a private social network, with features to help find useful information and improve care coordination. We denoted the person at the center of the network as the ‘Keystone’ user, representing the importance of, and centrality in, the family network. To help with the concerns we identified, in a manner that was acceptable to older people and their families, we developed the following design principles from our qualitative work.

  1. The platform must be family and community focused, not institution focused.

  2. The platform must be built with older people in mind.

  3. The platform must allow for shared and/or delegated control over the network and health information.

  4. The Keystone (the center of the care network) must be in charge if desired or delegated to a trusted proxy.

  5. Robust security and privacy provisions must be provided, without critical sacrifices to usability.

  6. An experience suitable for phones and tablets must be created.

We prioritized and developed care coordination features, based on our qualitative data, as well as from early feedback from beta testers. Early features included a filtered web search, curated by geriatricians and nurses, a medication manager, a communication hub, picture sharing, and a ‘help’ list. We partnered with the Health on the Net Foundation to use the HON certification process as a basis for including sites in our custom Google search, with additional hand selections and validation from our clinical team.

The InfoSAGE website (https://www.infosagehealth.org) is a free and open web- and mobile-based Internet platform that is built around an elder—the Keystone. This Keystone is connected to care participants, such as family members, care-providers, and neighbors/friends. When users sign up for InfoSAGE, the system invites them to participate in the more in-depth cohort study. The study networks are, at a minimum, a family dyad: an elder over 75 years of age (the Keystone) and an identified study partner (‘Proxy’ or ‘Caregiver’), a family member who provides support or care. For both parties, participation involved completing surveys at baseline and every six months to provide data about information needs and health and functional status. The surveys were conducted using Redcap (https://www.project-redcap.org) and were automatically sent when both a Keystone and a family member opted into the study in the registration process. The main page is shown in Figure 1.

Figure 1.

Figure 1.

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InfoSAGE website

The platform allows the elder to control who is in their network. The system has a search tool that can be used to search curated resources for elder care; a message and comment board for elder and family communication; a shared calendar and task list; and a medication manager. Additionally, individual medications can be access-restricted to Keystones and proxies only. Privacy, in particular, required additional design, such that information would not be inadvertently shared to all members of a Keystone’ s network. We further heard from our older focus group participants that they wished to retain control over the flow of information, and can delegate or invite members of their families as they saw fit. We created tiers of access, including Proxy, Caregiver, and Participant, and restricted access to certain features by tier. Keystones and proxies can adjust the tiers at any given time. The privacy model is shown in Figure 2.

Figure 2.

Figure 2.

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Tiered user roles and access levels

Recruitment

We partnered with local senior organizations, including two large retirement/continuing care communities in and around metro Boston. These organizations both helped to recruit potential participants, and provided early feedback and helped shape the overall project design. We advertised the presence of the site through newsletters and town hall meetings. A member of the study team met with prospective users and families on demand, to help with enrollment and to get people onboard.

Results

We evaluated the platform based on the: (1) adoption and usage of the system by elders and families; (2) network structures; and (3) feedback from user surveys. The population of users represents people drawn from early partnerships with local continuing care retirement communities. We asked users to provide their year of birth during enrollment, and calculated ages using December 31 as the anchor date. Participants additionally self-reported gender and those opting into the longitudinal survey-based study were also asked to self-report race, ethnicity, and educational information. For site usage, we recorded user logins. We more broadly measured site usage and behavior using Google Analytics, which included information about user location, flow through the site, and search terms, although these data were not linked to individual users. We created a geographic representation of Keystone networks based on the location of each users’ logins. The study team met regularly to reflect on barriers to enrollment and use, based on solicited early user feedback and meetings with prospective users.

Feasibility Assessment

From January 1, 2014 to March 1, 2018, there were 275 registered users and 18,499 page views. One-hundred-and-sixty-two users provided their year of birth, and 113 did not. Based on those who did report their year of birth, the average age of the Keystone users was 75.5 years, and the average age of the caregiver users was 56.6 years (Keystone median age 82, IQR: 23.5; caregiver median age 56.5, IQR: 11.0). There were 26 dyads (elder and caregiver pairs) that signed up for the detailed survey study. Of these users, 54% self-reported as Caucasian, 4% as African American, and the rest were unknown. Of those who did describe their relationship with a Keystone, 47% were daughters, 25% were sons, 9% were spouses, and 19% were other, including formal caregivers. There were 184 medications added, 85 messages exchanged, and 121 tasks created. We looked at what devices were used to log onto the website and, for all users, desktop/laptop devices accounted for 87.6%, while mobile/tablet accounted for 12.4%. Users in the longitudinal survey were asked 6 months after sign-up “Do you feel comfortable using this system?” and they responded Strongly Agree=6%, Agree=19%, Neutral=56%, Disagree=19%, and Strongly Disagree 0 %.

Network Structures and Usage Patterns

In analyzing our care networks, we observed that family members were distributed across 122 communities, so providing more geo-specific resources could be useful additions. Figure 3 shows a sample network with the locations of users in a single network by city location and usage over time by each user. Figure 4 compares Keystone usage versus non-Keystone usage.

Figure 3.

Figure 3.

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Sample network consisting of four users

Figure 4.

Figure 4.

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Distribution of user activities. CMA: Created/Modified/Assigned; Medication Events: Activated/Deactivated, Deleted, Details Viewed, Modified

There were user visits from 19 countries, as shown in Figure 5 (filtering methodology: exclude sessions under 30 seconds that were considered to be possible spam bots). There were user visits from 192 different US communities (inclusive of type: town, city, etc.; filtering methodology: exclude sessions under 30 seconds, exclude 100% bounce rate that are visits that did not go beyond the homepage). For survey study enrollees, the users logged in from 29 different US communities (filtering methodology: include logged-in sessions from study-enrolled users).

Figure 5.

Figure 5.

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InfoSAGE worldwide and Massachusetts usage

User Surveys

User surveys indicated that, when asked ‘how frequently have you looked up information about health or medical topics from the Internet?’, Keystones and Caregivers both showed an increase between baseline and the six-month follow-up. We observed that the rate of skipped or unanswered survey questions decreased from baseline to six months. This may suggest that Keystones, in particular, were hesitant to engage with a new system, but became more familiar and comfortable after a period of use (Figure 6). Keystones also reported having between two and six healthcare providers.

Figure 6.

Figure 6.

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Keystone (green) and caregiver (orange) baseline and six-month survey answers to frequency of health information searching from the Internet

Discussion

Our review of the literature showed that there is little published about care support technologies for older adults over the age of 75 years old.1-29 We speculate that this might be because 65 is the cutoff age because of Medicare, and this may have influenced the previous funding priorities for research studies. Below are some of our keys findings from this study.

Adoption of Use

Our study has shown that it is possible to recruit elders over the age of 75 and their families to use online and mobile technologies for information sharing and care coordination. One system design was based on the belief that families are the key to the community of care around an elder, but most existing approaches are single-user focused, rather than family-centric.

Recruitment proved to be more difficult than anticipated. We hypothesized that the main barrier to participation was overcoming the use of preexisting methods of communication, such as email, phone, or in-person visits. Potential participants had to be open and flexible to learning and using a new system for communication, made doubly difficult by a dyad-based study design. Additionally, in the elder communities, a sense of reticence and mild distrust was exhibited in sharing medical information online, despite the privacy and security controls that constitute the backbone of InfoSAGE. Other studies have experienced similar difficulties with recruiting from this population, speaking to the importance of user engagement and the utilization of continual feedback.16,17

Information Needs

We have also observed that information and support needs vary over time and are not monotonia Needs increase and decrease, depending on the care trajectory of the elder. Further investigation is needed to understand online usage patterns, how they relate to changes in health status, and how the system could be more useful in emergent care needs.

Privacy

Elders and families indicated that privacy controls were important. We do not know the optimal balance of privacy vs. information sharing/cascading to family members. We believe that, with changes over time and the care trajectory, the privacy needs and information sharing needs may change. Hence, having a system that allows control of privacy level to an increasing number of family members may be more valuable over time.

Usage

Apps such as InfoSAGE compete for attention as the communication channel of choice. Some families are in the habit of making many phone calls to support care coordination and to update family members. Regular email is also used to update families at a distance. Usage of this system requires it having a higher value than existing communication channels. We added medication management and interaction alerts, based on user feedback, and we noticed higher usage after those features were launched.

The InfoSAGE platform is more useful if the user (elder or family) is already registered and familiar with the system before needing it, meaning that InfoSAGE, or other technologies like it, designed to support elders in their homes, have many functions and potential uses, such as medication lists, calendars, to-do lists, microblogs, personal stories, etc., that may ply a role at different points in care. From a family’s perspective, these tools are most useful during the transitions of care. For example, the system may be more valuable during a visit to the emergency room, or a discharge from hospital to home. However, the family needs to be familiar with and using the tools before these transitions occur in order to make information available at the time they are needed.

Reduction in isolation requires greater family support and communication. One barrier to the adoption of InfoSAGE in this context is the family’s perception, structure, and support for using the tools.. The perception of ‘no-need’, alternate forms of contact, or if there are no family caregivers, are reasons for non-use. One possible gap here is the difficulty of incorporating formal caregivers (home health aids, visiting nurses, social workers) and informal caregivers within one network. Future research may explore these barriers in more depth; they may be related to an added time burden for physicians, the lack of an informal or family caregiver, difficulty incorporating formal and informal caregiving, and unclear compensation or liability for additional usage of external tools.

Technology Issues

In our recruitment, we found that while older adults do not necessarily have smartphones, almost all their children do. So, in some sense, a website designed to be adaptive to mobile devices and mobile apps, such as InfoSAGE, is designed for baby-boomers who have the burden of supporting their parents. One size does not fit all, in that we have many active users of InfoSAGE who are well above 65 years old.

We have also found that smartphones have a poor form factor for people with poor eyesight, or who have movement disorders, which include most of our elders over seventy-five. We are currently conducting formal usability evaluations on the mobile app. Although not widely deployed in elder homes, voice assistants, such as Amazon’s Alexa, Apple’s Siri, or Google Home devices, could improve upon problems with the form factor.

Integration

The effort expended on data entry by/for the users needs to be minimized to make this tool easier to use. Integration with the existing healthcare environment is difficult but important. There is a significant cost to setting up Internet data connections to import or export medication lists between a consumer-controlled website or app and a healthcare-provider system. Interoperability standards could help, but there is still a cost justification that needs to occur. Clinicians do not necessarily want another communication channel with patients, given the data overload that already exists, and time pressures.

There are many fragmented sources of information, each with their focus and associated politics. For instance, most community resources that have websites are designed to capture the user to their site. However, each website uses a different design. It would be useful to have a community resource information standard that would define an information package that could plug-in to apps like InfoSAGE to make resources more widely discoverable and easily integrated into other systems. Furthermore, we need to improve the quality of the wording of the information to make it easier to understand for elders. The look and feel could also be standardized. Finally, we have used curated resources from the Health on the Net Foundation, but more information resource sharing from providers with curated resources would be useful.

Medication Management

Accurate medication lists reduce medication errors and adverse drug events,18 but require frequent attention to maintain accuracy, especially in patients with multiple providers who may not effectively share health records.19 Use of a cloud-based app, such as InfoSAGE, for medication management may save time, for both for patient and provider, and may potentially reduce harm by: 1) hosting a more accurate medication list that includes non-prescription medications; 2) minimizing unintentional medication discrepancies or errors by sharing with multiple providers caring for the patient an accurate medication list; and 3) providing the patient with medication interaction information. We need to improve the interface between the medications and related decision support, to make it easier for the elders, and to study the impact of this technology on improving patient safety.

Challenges and Barriers of Elder e-Health Adoption

Although the proportion of older Americans who regularly use the Internet continues to rise, there exist barriers to further adoption of technology that are unique to this segment of the population. Advancing age produces new health conditions that inhibit the accessibility of technology that is often not designed with an older user in mind. For example, an estimated 20% of adults in North America aged 75 or older self-reported as having eyesight conditions,20 and increasing age has been linked to the inability to accurately and precisely use a computer mouse or track-pad.21-23 Beyond physical barriers, the design of websites and computer programs often assume a certain level of familiarity, with regards to computer interfaces, that puts late adopters, such as the elderly, at a disadvantage. The design of the user interface and user experience can cause indecision and frustration in this population, especially with elements of web navigation, such as hyperlinks.24,25

The literature has also reported that among the common barriers to adoption, as expressed by the elders, are issues of trust and privacy26. Mistrust is regularly experienced by older online users, expressed as a feeling of being on constant guard against perceived threats to privacy and security.27 Studies have observed that trust is significantly associated with Internet use among those aged 65 or above,28 and that, of those with Internet experience, trust is a significant factor of behavior change due to information found online. Online encyclopedias, such as Wikipedia, are user-curated information hubs, and have become de-facto health information sources, appearing in 71-85% of searches involving common health keywords.29 The accuracy and trustworthiness of any individual article cannot be assured, and several studies that have examined drug information have found the quality and quantity to be inconsistent, potentially increasing the risk to consumers.30,31

Conclusions

Our study shows that it is feasible to establish an online platform for elders over the age of 75 and their families and caregivers for information exchange and care coordination. This advances our understanding of some of the technological and adoption challenges in the use of online technologies by elders for information and healthcare coordination. The survey participants reported higher usage of the Internet for healthcare needs after six months. Applications such as InfoSAGE have the potential to increase the quality of life by improving access to high-quality education, improving communication and reducing isolation by connecting elders to their families and support networks. We also need to do more analysis on the structure and demographics of families and informal care givers, to see which family networks are more likely to benefit from this system. While our results are from a limited sample size, they are promising, given that more elders in future will have access to the Internet and mobile devices. Our investigation helps us to better understand communication patterns between elders and their care networks. Based on user feedback we receive, we will be able to improve the system to better meet the needs of elders and their families.

Acknowledgments

Acknowledgements: We acknowledge support from AHRQ grants R01HS021495 and 1R18 HS24869-01.

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