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XX.2 March + April 2013
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Digital Citation

Designing for health activism


Authors:
Andrea Grimes

Health is a hot topic among technology researchers and practitioners. Medical care is being transformed as health records shift from paper to digital and as physicians increasingly utilize decision-support software, tablet computers, and smartphone apps to augment their practice [1]. The portability and pervasiveness of computational devices have also allowed health management to break out of the boundaries of the hospital setting. We are seeing a proliferation of electronic tools that everyday non-professionals interact with directly as they attempt to improve their health. The HCI community is actively participating in this digital health revolution: We have designed and evaluated numerous systems that support chronic disease management and encourage preventive behaviors, such as physical activity and healthy eating. However, we have largely and implicitly treated wellness as a state that is equally achievable by all people. And, as a consequence, we have paid little explicit attention to how and why populations differ in their ability to manage their health.

Yet health-related inequalities abound: Developing countries have poorer health outcomes than developed nations. Within nations, income and ethnicity are powerful indicators of health status; for example, low-income and ethnic minority populations in the U.S. have the highest rates of preventable diseases such as obesity and diabetes. In large part, these differences can be attributed to the social determinants of health, that is, “the conditions in which people are born, grow, live, work, and age” and the systems put in place to manage health [3]. When we look at geographically bounded communities, we see the social determinants of health at work: Neighborhoods are distinguished from one another by their work and school environments, housing conditions, income levels, cultural norms, and resources (e.g., food vendors and opportunities for exercise).

While the term social determinants of health can appear fatalistic at first glance, researchers and policy makers have articulated strategies for eliminating health disparities. Doing so requires examining the larger structural forces (political, economic, and social) that shape community conditions. For example, low-income neighborhoods face low access to healthy foods, poor housing conditions, and higher rates of crime—all of which mediate residents’ ability to be well, physically and emotionally. The health sector’s ongoing attempts to eliminate disparities can be characterized by their activist focus: Recommendations for future work unabashedly call out issues of power, inequality, conflict, and morality [3]. And in so doing, these pursuits go beneath surface issues such as “poor eating habits” and “lack of physical activity” to examine what factors beyond the individual contribute to those behaviors.

An Activist Approach

As HCI practitioners we need to explore the implications of taking an activist approach in our design efforts. Doing so will involve an explicit examination of how and why groups disproportionately experience health problems, the social determinants of health that help create disparities, and how information and communication technologies (ICTs) can uniquely address these issues. Our community has produced valuable systems that encourage healthy living, but they are often designed with a primary focus on the behavioral and attitudinal barriers to wellness. Less frequently confronted are the social structures and environmental factors that work to create health inequities.

But how can we begin to create activist tools, those systems that tackle the unwieldy issues of power, conflict, and inequality? Focusing our sights on the community as a unit of analysis provides a tractable starting point because each community is a microcosm of larger societal trends. For example, we know that poverty is correlated with higher rates of diet-related disease. This trend is partially influenced by neighborhood-level factors: In the U.S., low-income neighborhoods have far fewer grocery stores than affluent ones. And in the stores that do exist, fresh fruits and vegetables are hard to come by. In this setting, technology such as a personal electronic food journal may be less effective, because the problem is not simply a lack of awareness of one’s habits, but also that making healthy choices is fundamentally more challenging. Examining health issues in this way moves us beyond a focus on how behaviors can be improved, to how ICTs might help users make healthy choices despite a food environment that makes such choices difficult.

Coping with the Ramifications of Inequality

Activist tools can take many forms. One approach is to create systems that help users cope with the ramifications of inequality. Much of my work has focused on helping residents of low-income, predominantly African American communities overcome the disproportionately high barriers to healthy eating in this context. For example, I designed OrderUP!, a cellphone game in which players learn to make healthier decisions when visiting local eateries (see Figure 1). Rather than tell users not to eat at fast-food restaurants, the game acknowledged that fast-food-laden streets are the reality for many people. As such, OrderUP! attempted to help users deal with this environmental context. Players assumed the role of a restaurant server; their goal was to quickly make healthy recommendations to customers by choosing the healthiest item from a rotating menu. The menu items were commonly available at restaurants in the neighborhoods that my study participants frequented: fast-food and soul food dishes (i.e., traditional African American cuisine). As players saw their reality reflected in the game, they began to think about their own day-to-day eating habits. Furthermore, because the game showed how healthy each dish was in comparison to other commonly available dishes, players got practical ideas for how to eat more healthfully.

Healthy behaviors are also catalyzed and inhibited by existing community norms. While it may be common to see people jogging or on their way to the local health club in an affluent neighborhood, the reality may be quite different in poorer sections of the same city. These social regularities develop over time due to factors such as urban planning decisions to provide limited sidewalks and economic conditions that limit leisure time. And, they can influence a population’s perception of what it is possible and important for them to do. ICTs may be made more effective by including functionality that directly leverages positive norms and helps users overcome those that are detrimental to their health. For example, in neighborhoods where outdoor exercise is uncommon, systems should help users see why going against the grain will be beneficial, and help increase their confidence that they can engage in such behaviors.

Facilitating Change

In addition to helping users cope with inequality, we can imagine tools that empower them to fight back against it. Designing systems that support health advocacy is one promising direction in this space. Take, for example, another application I created called EatWell. This tool lets people use their cellphone to record and share audio stories describing how they have tried to make healthy eating choices in their neighborhoods. Through this system, community members help one another eat more nutritiously by sharing their experiential knowledge. EatWell users valued hearing the emotion and personality in the voices of individuals from their community. These stories inspired hope, showing people who were up against the same barriers to making nutritious choices.

In addition to helping residents advocate change to one another, ICTs can also help residents change their environments. Prominent organizations such as the Robert Wood Johnson Foundation consistently advocate research and interventions that facilitate environmental change, whereby the physical and social environments in schools, workplaces, eateries, and other public spaces are made more conducive to healthy living. As HCI researchers and designers, we have the exciting opportunity to pave the way for technological innovation in this area.

To begin exploring the design opportunities, I created a tool called Community Mosaic (CM). Like EatWell, CM helps users advocate healthy eating to others in their community, but it makes this advocacy much more publicly visible. In CM, users take photos documenting how they are trying to eat healthfully and write text messages describing their experiences. They then send a picture and/or text message to the system phone number, at which point their messages are visualized on a large, interactive public display located in the local YMCA (see Figure 2). CM users advocate healthy eating as they provide concrete examples of how to do it. In a field deployment of CM, users began to subtly shift the power relationships within their community. Local food vendors held a lot of power in the community because they controlled what foods were available (often high-fat and high-sugar options) and had the means to consistently advertise unhealthy foods. CM helped residents take back some of this power, as people used the tool to draw residents away from unhealthy options and encourage them toward healthier dishes. The persistent public presence of the CM display (and the emphasis on nutritious foods therein) helped facilitate this power shift.

CM did not drastically change the community power relationships. However, it does highlight how ICTs can help residents address environmental impediments to healthy living through health advocacy. While CM focused on food environments, technology can support environmental change in many other ways. For example, little work has examined how ICTs can make neighborhoods more conducive to exercise. In low-income areas, issues such as crime and the limited presence of parks and sidewalks make it difficult for children to be physically active. In this context, standard motivational tools may not be enough to encourage exercise. Instead, innovative neighborhood watch systems may have greater impact. Such systems could help residents designate specific “outside play” hours and allow parents to sign up for shifts to patrol the neighborhood. Ambient cellphone visualizations that let parents receive updates confirming that no suspicious activity has been observed can provide further peace of mind. These tools may increase perceptions of neighborhood safety and help parents feel more comfortable in allowing their children to be physically active.

These examples illustrate how HCI practitioners can address health disparities by designing tools that help users cope with the ramifications of inequality, encourage change within the existing structures that shape their communities, and facilitate changes in their environments. In each approach, there is an explicit focus on the conditions that characterize local communities and the structural influences that underlie them.

Measuring Change

As technology becomes increasingly accessible even to impoverished populations, it is a promising platform for helping users overcome and tear down local barriers. Technology alone cannot eliminate health disparities and alter the structural forces that impede health management, but it can be part of the solution. Going forward, HCI researchers must collect evidence regarding the impact of activist tools. We need to examine topics such as intervention dose, that is, how long people need to interact with a tool for sustained change to take place. Working with policy researchers, sociologists, and those within the health sciences can help us better understand how our tools can fit into the broader effort to end health disparities.

The impact of activist tools may go beyond the more traditional measures of weight loss, behavior change, and physiological outcomes. Such measures are clearly necessary to demonstrate effectiveness, but it will also be critical to examine how these systems facilitate a sense of empowerment. Empowerment can be operationalized in terms of a sense of control over one’s life, perceived ability to influence the societal and organizational structures that influence one’s life, and confidence in the community’s collective ability to improve its health [2]. A focus on empowerment will illuminate to what extent ICTs can help users confidently pursue wellness within their local communities. For example, the Community Mosaic system began to develop users’ identities as health advocates by helping them feel that it is important for them to advocate healthy eating to others, and also confident that they have the ability to do so.

Going Forward

When we take an activist perspective, we begin looking beyond physiological, attitudinal, and behavioral aspects of health. We encounter a richer, more nuanced, and more complex space that makes technology design even more challenging. Focusing our sights on specific geographic communities can provide a starting point for this work. In addition, ecological models of health behavior theory and interventions from the health sciences (those that explicitly focus on the transactions between people and their sociocultural and physical environments) can help us pinpoint specific phenomena to focus on.

Yet even with this body of literature as our guide, several challenges arise when doing this kind of research. First, as we focus on the structural forces that work for and against populations, we must not design systems that overemphasize the barriers that exist. It will be important to help users overcome these barriers while not forcing them to constantly dwell on the problems. Such an overemphasis could have the unintended consequence of frustrating and overwhelming users. Instead, we should design systems that portray and inspire hope, for example, by highlighting ways in which the community is succeeding at overcoming local barriers or by helping users feel empowered to take on the problems.

Second, not all users will care to be involved in activist endeavors. They may feel too burdened with their own problems to engage with others in their community. For those individuals, it may be valuable to create systems in which their participation is not explicitly framed as a form of activism or where the participation required is very low. Indeed, the Community Mosaic system demonstrated the benefits of crowdsourcing the small efforts of many.

Finally, HCI practitioners, researchers, and designers may themselves feel uncomfortable doing work that has the word activism associated with it. I use this term simply as a way of bringing our attention to the important issues of inequality, conflict, and power that are often not addressed in HCI research on health. And while it may feel that we are overstepping our bounds as designers by engaging with issues like race, income, and power, prominent researchers, institutions, and federal agencies have repeatedly indicated that confronting these issues is necessary for eliminating disparities.

For those in our community interested in health promotion, focusing on the broader, ecological context of health is crucial. Doing so will allow us to create tools that are better situated within users’ sociocultural context and help them change that context. To treat wellness as a state that is equally achievable for all people is to neglect a vast body of work showing otherwise, and national mandates describing the need for innovations that address health disparities. Examining health at the community level provides a promising way for us to begin tackling these issues.

More broadly, it is also critical for HCI researchers engaged with societal problems beyond health and wellness to similarly address issues of inequality and the underlying structural forces and environmental conditions that create inequities. Designing systems and conducting research at the community level necessarily involves understanding how and why neighborhoods differ from one another. As we examine how ICTs can intervene in diverse contexts such as education and environmental sustainability, our work will be greatly enriched as we design and evaluate how activist tools can directly address issues of power, conflict, and equity.

References

1. Hafner, K. Redefining medicine with apps and iPads. The New York Times, 2012; http://www.nytimes.com/2012/10/09/science/redefining-medicine-with-apps-and-ipads-the-digital-doctor.html

2. Rogers, E.S., Chamberlin, J., Ellison, M.L., and Crean, T. A consumer-constructed scale to measure empowerment among users of mental health services. Psychiatric Services 48, 8 (1997), 1042–1047.

3. World Health Organization. Closing the gap in a generation: Health equity through action on the social determinants of health. 2008.

Author

Andrea Grimes Parker is an assistant professor at Northeastern University, with joint appointments in the College of Computer and Information Science and the Bouvé College of Health Sciences. Her research in HCI and CSCW examines how interactive computing applications can address racial, ethnic, and economic health disparities.

Figures

F1Figure 1. OrderUP! challenges players to make healthier eating choices when visiting local eateries.

F2Figure 2. Community Mosaic helps people advocate healthy eating to others in their community.

©2013 ACM  1072-5220/13/03  $15.00

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