Women’s Use of ICTs: Lessons Learned from Using Telemedicine Systems to Manage Health

itsrg working paper number two 8.06.08

caroline guigar

michele masucci

temple university

Feminist scholars have drawn attention to the importance of understanding the how women’s responsibilities and activities as members of families, communities and workforces shape and constrain their lives as individuals. This discussion has been extended into the realm of women’s access to and use of information and communication technologies (ICTs). Most scholars have chosen to approach the issue by assessing the disparities in basic access to ICTs, a necessary project for informing how society should proceed on the parallel paths of both advancing technology innovations and promoting extensive technology use. Some scholars are beginning to point to the need for better understanding the mechanisms that foster as well as limit digital inclusion for women.

The rapidly emerging field of e-health is a particularly relevant context for examining women’s digital inclusion experiences. The field of e-health addresses a wide range of issues related to disparities of technology access and their close connection with health disparities. Moreover, since women remain at the center of coordinating family health care, their use of e-technologies related to health is of particular importance to policy makers and health care providers alike.

Despite the centrality of health care within women’s daily lives, the impact of gender and its associated roles and family expectations is not well understood within the e-health literature. Issues such as how women will use technology to access health information, interact with their medical teams and track their own health risk factors and outcomes as well as their families should be of central concern in the advancement of e-health policy and practice. Health practitioners need to gain a more nuanced understanding of how women’s use and understanding of technology impacts their ability to use telemedicine and e-health system as a basis for developing web-based health care delivery and monitoring systems. We have found in prior studies that providing women with training to use e-health systems is essential for them to integrate the approach into their complex array of daily activities.

For the last four years the Information Technology and Society Research Group of Temple University (ITSRG) has partnered with the research teams of the Temple Telemedicine Research Center (TTRC) to provide basic and computer literacy training across several clinical studies related to the use of e-health systems among different groups of users from inner city Philadelphia. Generally, we worked with a predominantly poor, inner city patient population that was comprised of three cohorts of individuals: elderly African American men and women with risk factors for heart disease, young African American and Latina women with gestational diabetes, and middle aged African American women with metabolic syndrome. Most had little prior experience using ICTs and none directly related to using e-health systems or searching for health information on the Internet. Our role has been to partner with clinicians to learn about the health information related to the conditions patients are managing and to integrate the goals for computer and e-health systems use are related to specific clinical studies. We have developed computer training materials and workshops that foster gaining basic skills to use computers, access the Internet and search for health related information. We have also provided direct training to study participants related to use computers and associated e-health systems for managing their specific health conditions.

The one-on-one training that we have provided has provided a context for examining the value that participants place on integrating the use of e-technologies in the management of individual and family health. It has also provided a context for better understanding the unique constraints faced by women to learn about and use such systems given the challenges they face to deal with family, economic, transportation, and health concerns in their daily lives.

The characteristics and findings of studies, along with discussions of the study participant demographics, that ITSRG has engaged have been extensively reported in the health, geographic, and e-collaboration literatures. Three aspects of the use of e-technologies among the individuals involved in these studies deserve additional attention by policy makers and scholars. We will highlight the specific concerns related to the women with whom we worked in all three cohorts, since we found that they faced unique challenges to operationalize the use of ICTs for managing their health. These include: (a) the importance of English language literacy in the use of e-health systems and implications for system development and training; (b) the risks of using obsolete technologies to save costs; (c) the importance of understanding the relationship between basic and technological literacies among health care providers and e-health system developers; (d) the need to better understand the role that social networks play in improving e-technology use and access; and (e) the need to better understand how gender defined roles shape the technology use experiences among women.

English Language Literacy and the Use of E-health Systems

Philadelphia is home to many multilingual communities. The area served by Temple University Hospital is adjacent to one of the nation’s largest Puerto Rican communities. ITSRG has encountered many English Language Learners (ELL) throughout the course of training almost 300 adults enrolled in studies coordinated by the TTRC. One project involved setting up computers in homes of 30 women with gestational diabetes. About half of the women were bilingual, with Spanish as the primary language they use to read, write and speak. Because of this, translators were used during the home computer delivery and training process. These participants might have made better use of the e-health systems they used had Spanish language versions been available for use online.

However, mounting such an effort is time consuming and expensive, since it is important not only to provide a direct translation of the information, but to do so in a way that is culturally relevant to the population who will use the information resource and web communication system. One solution that might be appropriate to address this need is for studies to design implementation strategies that involve partnerships with community serving organizations that can assist with the barriers for information communication and different cultural contexts for using e-technologies that might shape user experiences.

The Risks of using Obsolete Equipment and Technology

Three strategies used by these projects to address possible access issues related to ICTs included: (a) providing used computers and free dial-up Internet service providers (ISP) to study participants, (b) identifying community church technology center (CTC) access locations and training staff members at those facilities to work with study participants, and (c) staffing a small community technology work station within the hospital research center. All three strategies required study participants to exercise a great deal of personal agency in order to make use of the resources that were provided. In the case of the first approach, providing free computers and dial-up ISP, we found that using old equipment and slow Internet access was highly problematic for inexperienced computer users. The challenges that were faced with the free equipment and dial-up ISP included lack of funds to pay for utility bills needed to run the equipment, problems with the effectiveness of operating system and virus protection software, insufficient memory to use the e-health systems that were being evaluated, and failures due to the wear and tear effects on the old equipment.

We found that many participants involved in the TTRC studies did not have reliable computers at home. Participants reported that they had been given or purchased used computers from work or from a friend. Routinely, participants noted that their computers were slow or were inoperable or had been given away to other families members, this was especially the case with elderly, heart health populations. While participants might have computers in the home keeping Internet access, both dial-up and broadband, was often problematic and was the first thing families got rid of in times of financial difficulties.

Our use of community and church community technology centers, along with the training that was provided to their staff members, while enthusiastically received had little effect on whether or not study participants used the e-health systems related to managing their conditions. The staffing of the hospital computer station was used by a few individuals with success in terms of their use of the e-health systems, but this approach required those participants to incur the extra time and expense of traveling to and from that site. One of the most interesting observations we can report is that most participants relied on more than one access strategy, with careful thought placed on the advantages and disadvantages in terms of the time involved, costs for transportation, and availability of support staff to use ICTs. One woman managing her heart health using a telemedicine system even noted that she often used the free Internet access in a local hotel lobby near her home.

For example, older participants often identified adult children and teenage grandchildren who they realized could assist them in using telemedicine communication tools. On occasion, participants would bring family and friends to trainings sessions in order to gain training for their support staff. Users often identified neighbors, church staff and librarians as key people to whom they could turn to if they had a question.

The Connections between Basic and Technological Literacies

One aspect that was common across all three cohorts of e-technology users was that basic and technological literacies seem to be closely related. We did not measure basic literacy directly in working with the three groups. However, through our one-on-one interactions with study participants, we observed and noted the ease with which they read instructions and Internet content, completed forms and questionnaires, and used search engines to find health information. The e-health systems and e-technology strategies employed by the various studies take into account that participants are likely to have only basic literacy skills. Therefore, the user-interfaces were designed to be as easy to use as possible. One feature common to all e-technologies used was the ability for participants and health providers to communicate with each other. We found stark differences between those with the highest and those with the lowest language use skills. And, we found contrasts between the language use skills between providers and participants, with providers communicating in more specialized terms and with respect to specific health related information. Participant communications, on the other hand, were not confined solely to health related issues but often to the broader context within which their health concerns were placed. And, participant communications often did not use health related language in ways that were consistent with provider uses or meanings of the same terminology. This relates to the use of the e-health systems investigated in two important ways. First, while clinicians share in common standard understandings of health conditions and measures, the study participants do not. Participant descriptions of their health was often ambiguous, inconsistent, and contextualized within their life-stories. The use of on-line communication boards to mitigate the differences between professional and lay knowledge of health concerns in order to help participants improve their use of the system and management of their health conditions is an important feature that was included in all of the studies. However, many participants did not use the communication tools at all, and others used them infrequently. We suggest that the differences in written communication skills, along with the differences in health knowledge, between professionals and study participants are so vast that new strategies for fostering this important mode of e-health need to be devised.

The Role of Social Networks in Fostering the use of E-Health Technologies

All three studies showed that women relied extensively on their social networks in order to access and use e-health systems. The strategies they employed included: (a) relying on family members and friends for access to equipment, ISP and additional training; (b) finding others to access and use e-health systems on their behalf as proxy users, (c) linking their computer use to purposes beyond health management, such as assisting children with homework, and (d) linking their use of e-technologies to manage health with other activities in their daily rounds. These strategies helped women study participants to manage the complex set of responsibilities and roles they have as family members, workers, and community members, well documented in the feminist geographic literature. However, we also found that these enabling strategies presented downsides for women as well. Family use of computers is complex, and in many instances we found that families competed over the use of computers in the home, often with women’s needs coming in behind those of their children.

This competition for technology resources in the home extended past women’s biological children as well. We learned that some of the grandmothers we trained were often the after school care-givers of grandchild and extended family members.  While, grandmothers reported that they both felt the children in the home needed access to computers over them due to school work needs, others noted that children  took over the computers and refused to allow the grandparents access.  A few elderly participants noted that adult children took their computers to use because the elderly participants had no need for the computer or didn’t use it enough. Elderly participants also noted that adult children monopolized the computer in the home as well. One young woman noted that she could not use the telemedicine in her study because use of the dial-up competed with other family members needs for the one phone line in the home. Additionally, she was the childcare provider in the home even though she did not have children of her own at the time. This responsibility to care for the young children in the home meant that she did not have time to use the computer in the home during the day to send her data to the clinicians.

We also found that women relied on family members for assistance in using ICTs and e-health systems, but many complained that their helpers were doing not teaching the skills they needed to learn. And, in many instances women had to cope with the anxiety and power dynamics associated with having less experience and knowledge about the use of ICTs and e-health systems than their children and other young people in their social networks. Women in the studies often voiced fear of the computer and the Internet and worried about breaking the computer. During training sessions many of the women needed constant reassurance from trainers that they could not “break” the computer.

Yet, their the experience of ICT use was dynamic within the house especially among elderly women. One women noted that she took a computer class in order to be able to understand and monitor what the children in her family were doing with the computer. Some women  were trained with their husbands and reported that they would be the ones to enter the health data for their husbands. Furthermore, the men we trained often noted that their wives were the more technologically savvy members of the household and the men would rely on their wives to do the work of updating their husband’s health data in the telemedicine system they were using.

Women’s use of computers at work to manage health was also problematic for those who feared repercussions from employers and a lack of privacy with respect to their health information. Finally, In some instances, women did not feel safe at home at all due surveillance by family members and government institutions as well as the threat of domestic violence. Health care providers involved in the studies did not account for the effects of family dynamics, negotiating power relations related to the use of ICTs, and safety concerns that women face.

The Importance of Gender based Roles and Responsibilities for Women

We found that gender based responsibilities presented constraints for women study participants, even in instances where they had sufficient access to ICTs and experience to use them for managing their health.  The most significant challenges faced were the time constraints related to child care, elder care, and work that mitigated access and use. Since women’s roles on the job are often involved in customer service and as support staff, not only is their time constrained, they often do not have privacy in their work settings that would support use of work ICT infrastructure for personal health matters. At home, the situation is often little improved in that women had to put a great deal of thought and planning into managing their time in order to use e-health systems privately. In fact, the use of e-health systems and the Internet highlights the contrasts between the privacy women experience in their daily lives as mothers, daughters, workers, aunts, grandmothers, nieces, friends, and helpers and the privacy standards associated with accessing proprietary health systems and the Internet. The two realms are inconsistent altogether, and women we worked with often experienced conflicts between what was expected in their personal realms and what was expected in their use of ICTs and e-health systems. During interviews women often noted that while they found the telemedicine systems helpful and interesting they lacked the time to integrate it into their daily lives.

We found that a number of the elder women who we trained had been employed as secretaries and data input specialists. Many of these individuals were enthusiastic about gaining new technology skills in relation to the management of their health. We found that by coupling the opportunity to gain new ICT skills with managing individual health, women managed both processes better. Given the degree to which women are placed at the center of managing family health, we suggest that this is one of the most promising pathways for increasing ICT skills of elderly women, a group that is often cited as the least included within the digital society.

Conclusions: Implications for Future E-Health Research and Policy Implementation

In the end, what begins to emerge is a complex pattern of compliance and the daily struggle women face in caring for their own health as well as the health and welfare of their families — as well as the enormous impact that this daily dance has on their lives and long-term health status. Our experiences working one-on-one with women learning to use ICTs for managing their health illustrated the need for better understanding of the context within which women are learning and applying technology skills in their daily lives. On a practical level, our efforts show the importance of identifying multiple settings for accessing and using ICTs, including ones that support them to manage their social roles as caregivers and workers with their individual health concerns. We also suggest that more attention to the socially-bounded movements of women is needed. Women are extremely mobile, navigating multiple work and social environments often relying on more than one mode of transportation. Yet, the e-health systems we worked on were static in nature, and assumed that women’s lives are situated primarily in their homes. Relying on the home as the primary and sole locus of computer access and use proved to be an ineffective strategy for many of the women with whom we worked. Gaining a better understanding of the cultural contexts of women’s lives is equally important. Health care providers are especially attuned to the challenges of communicating across language and cultural barriers. E-technologists need to reflect that concern in their conceptualization of e-health systems to extend the benefits of their use across cultures and geographic settings. Most of the women with whom we worked were enthusiastic ICT learners and users, and recognized the potential of e-health systems to improve the quality of their health care. For some, it represented better care than they could receive in person because of the potential to reduce office visits and improve monitoring health conditions. It is incumbent upon health care providers and technology specialists to account for women’s experiences using these systems to design ones that take into account their particular challenges and concerns. The rapid rate of improvement in mobile technologies holds promise for many, since transportability would seem to address many of the access issues we observed. More direct connections between technology and literacy training also seems essential for improving the use of systems among women who lack English language skills and technology use experiences. Approaches for implementing e-health monitoring systems also need to attend to the safety, privacy and empowerment concerns of women if we truly expect to improve their health outlooks using e-technologies.

© Caroline Guigar and Michele Masucci 2008 All Rights Reserved