Cover story

XXVII.3 May - June 2020
Page: 24
Digital Citation

The forgotten margins: What is community-based participatory health design telling us?


Authors:
Christina Harrington

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Methods of participatory design have been celebrated for their potential to democratize the design process and amplify voices through the collaborative development of products, systems, and physical spaces. Participatory design has been found to elicit both empowerment and the ownership of decision making regarding technology management, particularly in areas such as health and wellness, where the monitoring and management of chronic illnesses and diseases are often a challenge for people in their homes [1]. While this design approach has seen debate and shifts over the decades, there is still a question regarding privilege—who gets to participate in design? [2,3]—and a concern for how participatory design is poised to support those who are typically neglected.

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Researchers and practitioners have sought ways to localize design directly in the environments of the people they are working with, often through the approach of community-based participatory design (CBPD). CBPD engages design researchers in conceptualizing solutions with communities (defined by local proximity or cultural likeness) outside of the university setting. This method draws from both community-based participatory research and participatory action research in the ways it centers community needs in design [4]. CBPD makes it possible to collect richer personal narratives by designing with potential end users, a great advantage for voices that are typically marginalized. But even with its many benefits, CBPD in human-computer interaction (HCI) has a tendency to rely on commodifying narratives of disparity among certain communities, which sets a problematic tone for the future of inclusivity in design.

back to top  Insights

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Designing for and with underserved populations has long been a focus of HCI and design research. With the term underserved populations, I refer to people who experience societal inequalities due to factors such as socioeconomic status, racial and ethnic identity, gender or sexual representation, or disability status or impairment. As many economic, environmental, and societal constraints compound these factors, socially disadvantaged groups face differences in their quality of life that include health disparities and an unequal distribution of resources. This presents an opportunity for design research to address areas of health and wellness that consider the relevance and long-term implications of technology interventions such as wearables, mobile apps, and smart devices within these communities. In this area of HCI and design research, we see an increasing number of practitioners and scholars focusing on the social implications of health technologies, taking on a more sociotechnical perspective that considers underlying systemic issues. This perspective has also provided the opportunity to shift the research community's perception of these populations by centering values at the forefront of design.

ins03.gif Photos taken during the community PhotoVoice activity arranged by health aids and health barriers.

My interest here centers on contributing to the ongoing shift in design culture, realizing that there are values that emerge from engaging certain communities in design. This article has three goals related to this shift: First, to highlight how certain groups have been pushed to the forgotten margins in the scope of design. Second, to share insights from my own research doing CBPD with Black elders. And last, to attend to the ways in which these insights may bring a new gaze to design research and a methodology that speaks to this gaze. My hope in sharing these insights is to evolve the common narrative of marginalized groups away from challenges and disparities, and to acknowledge the ways in which design should push for a more holistic narrative of this particular community.

back to top  Who Are the Forgotten Margins?

With HCI and design being more intentional than ever about the need to incorporate voices from underserved populations in research exploration [5], we are seeing more of a push to acknowledge intersectionality, particularly for those who sit at the forgotten margins. The forgotten margins comprise individuals who are not only marginalized across multiple identities but also who, despite the current push by researchers to serve underserved communities, are still neglected in many technology design efforts. These may be communities who are harder to recruit or smaller as a percentage of the population, but who still deserve our focus in speculating future technology solutions. For example, research on the use of smart devices that might support aging in place for older adults has become well-established in computing and health informatics. Much of this work, however, stands to actually further marginalize certain groups such as Black older adults, or elders, by failing to include race and income as characteristics that may impact the adoption of these systems [6]. There has been little consideration for how the intersection of these identity constructs affects the reception of methods, activities, and solutions among the aging population. Black elders who sit at or below the poverty line experience multiple forms of oppression (classism, ageism, and racism) and may require a more nuanced consideration of what ethics and sustainability look like in technological health interventions. This presents both challenges and opportunities for traditional design research. Simply put, lower-income Black elders are an example of those at the forgotten margins of both society and design.

back to top  Engaging Design in Community-Based Settings

For the past three years, I have been collaborating with a group of Black elders in lower-income neighborhoods across the Chicago metro area to frame and explore various health topics through CBPD [1]. This work has been structured as a series of qualitative inquiries—individual and group interviews and participatory design workshops. The focus of this research has been to explore residents' current perceptions and practices related to health management and to collaboratively envision tools and resources that fit the community. Residents of this community have engaged in various design activities to define their concepts of health from a social and cultural perspective, contrasting the typical biomedical-model research that has been the focus of healthy aging. As a way to shift the narrative of what it means to engage those at the forgotten margins in design, I have worked to not only conceptualize health technology with this group but also to understand their stories and experiences in their entirety. I share three main insights from three years of doing health-related participatory design fieldwork with this population, insights that may help to shift the biomedical approach and in turn create new perspectives on health design at the forgotten margins. These insights consider what it means to engage in design research with marginalized groups, the ethics that are involved in this space, and the growing need to elicit personal narratives through storytelling and to consider this as an important part of the way we think about interaction design.

Marginalised older adults want to be seen for more than just functional health challenges.

We don't always want to talk about health as what's wrong; sometimes we want to talk about the fun things we do to take care of ourselves. We're older but we're not dead yet.
—Community resident

Explorations of health needs and technology preferences have led to discussions about how health technology research is perceived among the community residents I work with. They expressed a disdain for engaging in studies that always focus on what they lack and the ways in which they are disenfranchised, as this mirrors the negative experiences they've had with medical research institutions throughout history. The compelling desire to help or fix the problems of the older adult population has led to a negative approach to this type of research, with scholars often viewing aging research with a deficit-based lens [7].

ins04.gif Community residents reviewing PhotoVoice photos during the card-sorting activity.

In studies that focus on marginalized older adults, there is much more of a need to prove why this group deserves attention from funding sources or design and research effort, leading researchers to place emphasis on the problems or disparities facing these groups. Very seldom do we look to this population for what we can learn from their stories, historical experiences, and the legacy of their way of life. Outside of bringing a diverse perspective to our research practice, this population is an overwhelmingly warm and welcoming group that brings years of knowledge and wisdom to the realm of design research. The current generation of Black elders has lived through several decades of societal shift in terms of race relations in the U.S. and is currently one of the last generations who would have lived through the evolution of integration and the Civil Rights movement. Black elders' ability to establish and maintain cultural traditions suggests a unique ingenuity that speaks directly to our perceptions of innovation. For example, in discussing resources that support health and wellness, community residents shared insight on how Black elders have mobilized throughout their neighborhoods to create community-based meal programs and family-support services. These community programs have been a staple in neighborhoods across the South Side of Chicago and should be the place where researchers begin understanding this community. Although this is a challenge in funding-driven research efforts, it is important that we see the wholeness of groups such as Black elders and explore topics such as preserving family narratives, healing and spiritual wellness, and others that may speak to that wholeness.

Technology access is about so much more than physical and perceptual interactions.

Most often, design for aging populations considers the ways in which physical and sensory perceptions affect technology interactions. We think about accessible technologies as those that users of varying physical and sensory abilities are able to engage with. Among the insights gathered throughout my experiences in engaging in participatory design with Black elders, I have learned that this common way of considering technology access is not enough. Accessible technologies are not just those that are easy to interact with in relation to vision, hearing, and touch. Accessible technologies are also those that consider culture, societal positioning, and economic status. As true equity for design calls for us to innovate tools and services such that everyone has access to the empowerment and success for which participatory design is praised, we have to consider all facets of what it means to obtain, own, operate, and maintain technology. Oftentimes, in our discussions of evaluating existing technologies or thinking of new innovative solutions, community residents would comment that finances and ownership are major barriers to their being able to adequately assess a health technology's relevance in their life. Here, engaging in CBPD elicited conversations about the ways in which devices and systems are maintained in environments where basic technology infrastructure such as WiFi and computer access is a challenge. Many residents commented on not having WiFi access, a result of poorly resourced neighborhoods where social positioning and local governance dictate technology infrastructure. As a result, home-assistant technologies and smart devices are out of the realm of feasibility as health-support tools. Even more, feelings of being socially excluded in the ways newer technologies are conceived has resulted in individuals not regarding technology as solutions at all. When considering innovation for technology and how we can make this more accessible, we should incorporate economic viability, financial sustainability, literacy, and proficiency as metrics to whether a solution makes sense. Proposing solutions in certain communities that don't consider these constructs is harmful and continues to expand gaps in health equity and digital access.

Visual documentation methods elicited rich storytelling that supports design exploration.

It's like there's a template for the negative stigma or perception of impoverished people. Everyplace, every city has an area of well, Black people, and they're all painted that way.
—Community resident

Among the various activities I've conducted with this community of Black elders, PhotoVoice may have been the most productive in terms of eliciting narratives about health at the community level. Providing these community residents with cameras (we used disposable cameras to eliminate barriers of individuals not having smartphone access or knowledge) and asking them to document health in their environments gave individuals the opportunity to share stories of their friends, family members, and peers, and the things they enjoyed about their neighborhood. In our workshops, storytelling was valued as having a strong history in the Black community. Although this method did reveal depictions of health challenges in the community, there were stories of community gatherings, gardening clubs, dance classes, and local volunteerism that spoke to the vibrancy of the community. Community residents shared how it was the smaller things such as clean streets and space to garden outdoors that were meaningful in a holistic view of health, but researchers from universities, they said, rarely wanted to focus on these things. Methods such as these, where individuals are able to take time and narrate their own story, speak far beyond functional limitations associated with aging and the negative perceptions of Chicago's South Side.


Accessible technologies are not just those that are easy to interact with. Accessible technologies are also those that consider culture, societal positioning, and economic status.


Collecting personal and community narratives among marginalized populations has been known to help with understanding community history [8] and moving toward building culturally informed systems [9,10]. For these elders, this form of storytelling resembles how Black families pass down stories and share photo albums, making it more of a community social activity than research. Similar to findings from [8], storytelling also afforded an understanding of the architectural design aesthetic that is local to their community, detailing a history of Black architects and designers who were responsible for the beautiful brownstones that are synonymous with Chicago. In this way, PhotoVoice, accompanied with collecting oral stories, is an approach to help humanize a community beyond disparities and negative perceptions. Storytelling in community-based design helps to see the community as it sees itself and affords an opportunity to engage groups in envisioning ways to document and preserve narratives more aligned with the community's history.

back to top  Addressing Damage-Centered Research

To date, much of the research published in the area of health and wellness in HCI and design has explored how technology can support older adults in functioning in their everyday lives, most often focusing on the functional challenges experienced with aging [11]. This approach has been deficit focused, centering the limitations that older adults experience in doing daily tasks, social isolation that stems from growing older, or ways to manage certain chronic illnesses and diseases. Much like the deficit-focused approach to aging research, design research for and with marginalized communities has leaned toward being damage centered. That is, much of this work has framed technology through the problems and challenges marginalized populations experience, and thus focused on disparities and how these communities are lesser. Marginalized communities as a whole have typically been looked at as a problem that needs to be investigated or solved. Damage-centered research reinforces the worst stigma about a population by painting a one-dimensional narrative of depletion, without acknowledging the aspects of identity that are valuable and unique [12].

However, there are contributions to design that stem from looking at the ways in which those at the forgotten margins preserve their well-being and sense of community. Although design research serves to address societal challenges in these communities through the systems we design, there is also great value in engaging in exploratory and ethnographic work that will allow us to draw out holistic narratives that speak to the strengths of lived experiences in these communities. While we have seen research that has called for the development of technology that celebrates culture [13], this has yet to become a mainstream agenda, with more recent work focusing primarily on the problems of marginalized groups. Groups such as Black elders have had one of the strongest histories as a population in the U.S., resulting in a unique sense of ingenuity in areas of community building and wellness programs. While it is important to understand disparities and injustices [3,8], it is equally crucial not to allow these issues to singularly define these communities.

While the need to acknowledge communities such as Black elders has typically been grounded in conversations of disparity and lack, there are values that emerge from engaging in CBPD with this and other groups who have been marginalized [13]. The push for inclusive design, or design that resists the impulse to position marginalized communities as edge cases, suggests that we consider other sociocultural factors that impact people's interactions with the world around them. What used to be thought of as designing for edge cases or extremes is becoming a more common practice, pushing the needle forward on design being inclusive. Engaging groups like lower-income Black elders is considerably important here because, by not doing so, designers are reinforcing existing patterns of marginalization in society and introducing further inequalities [11]. Participatory design has the potential to realize different societal centers in the processes of creativity and innovation and appreciate the historical experiences and rich narratives that Black elders bring to design research. There is potential for methods such as participatory storytelling to contribute to the preservation of cultural heritage and the speculation of Black futures if we as a research community shift our gaze. To push this notion a step further, there is an opportunity to look at how we might structure design as a resource to support communities mobilizing among themselves without researcher presence, similar to actions that Black elders are already taking to maintain community health programs.

We must consider that people don't view themselves or their identity through a lens of poverty and disparity; they see themselves through what they do have and through their lived experiences. Storytelling in design research allows us to see personal narratives of how people see themselves. We are able to understand not just the challenges but also the values of these identities. One way to shift from damage-centered research would be to seek out how individuals frame their community narrative and elevate those stories. It's important to include this framing since our lens as design researchers may be skewed. Ask people how they describe their neighborhood. Collect accounts of the opulence and success of communities as a way to speculate design that may support quality of life. Talk about the richness of communities by including narratives of the vibrancy and history of the buildings and the people. While this may shift our approach away from centering technology, it may prevent groups like Black elders in low-income communities from being forgotten. Drawing on these cultural norms may make this form of participatory engagement that specifically aims to preserve the heritage of these communities more common. Additionally, we may begin to look to engaging these communities as a way to decolonize design by thinking of design as a tool of understanding, not a skill that polarizes "us" versus "them." Through this lens, we can reclaim the edges that these communities have been marginalized to as central, and conceptualize how these groups show up in the future of design.

back to top  References

1. Harrington, C.N., Borgos-Rodriquez, K., and Piper, A.M. Engaging low-income African American older adults in health discussions through community-based design workshops. Proc. of the SIGCHI Conference on Human Factors in Computing Systems, ACM, New York, 2019. DOI:10.1145/3290605.3300823

2. O'Leary, J.T., Zewde, S., Mankoff, J., and Rosner, D.K. Who gets to future?: Race, representation, and design methods in Africatown. Proc. of the 2019 CHI Conference on Human Factors in Computing Systems. ACM, New York, 2019.

3. Harrington, C., Erete, S., and Piper, A.M. Deconstructing community-based collaborative design: Towards more equitable participatory design engagements. Proc. of the ACM on Human-Computer Interaction 3, CSCW (2019), 216.

4. Hayes, G.R. The relationship of action research to human-computer interaction. ACM Trans. Comput.-Hum. Interact. 18, 3 (2011), article 15.

5. Erete, S., Israni, A., and Dillahunt, T. An intersectional approach to designing in the margins. Interactions 25, 3 (2018), 66–69.

6. Holt, C.L. Health ministry and activities in African American faith-based organizations: A qualitative examination of facilitators, barriers, and use of technology. Journal of Health Care for the Poor and Underserved 28, 1 (2017), 378–388. DOI:10.1353/hpu.2017.0029

7. Vines, J., Pritchard, G., Wright, P., Olivier, P., and Brittain, K. An age-old problem. ACM Trans. Comput.-Hum. Interact. 22, 1 (Mar. 2015), 1–27.

8. Fox, S. and Le Dantec, C. Community historians: Scaffolding community engagement through culture and heritage. Proc. of Designing Interactive Systems. ACM, New York, 2014, 785–794.

9. Parker, A., Kantroo, V., Lee, H.R., Osornio, M., Sharma, M., and Grinter, R. Health promotion as activism: Building community capacity to effect social change. Proc. of the SIGCHI Conference on Human Factors in Computing Systems. ACM, New York, 2012, 99–108.

10. Moutafidou, A., and Bratitsis, T. Digital storytelling: Giving voice to socially excluded people in various contexts. Proc. of the 8th International Conference on Software Development and Technologies for Enhancing Accessibility and Fighting Info-exclusion. ACM, New York, 2018, 219–226.

11. Veinot, T.C., Mitchell, H., and Ancker, J.S. Good intentions are not enough: How informatics interventions can worsen inequality. Journal of the American Medical Informatics Association 25, 8 (2018), 1080–1088.

12. Tuck, E. Suspending damage: A letter to communities. Harvard Educational Review 79, 3 (2009), 409–428.

13. Grimes, A. and Harper, R. Celebratory technology: New directions for food research in HCI. Proc. of the SIGCHI Conference on Human Factors in Computing Systems. ACM, New York, 2008, 467–476.

back to top  Author

Christina N. Harrington is an assistant professor in the College of Computing and Digital Media at DePaul University. Her research focuses on how collectivism in design can support social change in areas such as health equity and digital access. She is the director of the Equity and Health Innovations Research Lab at DePaul and an Encore Public Voices fellow with the OpEd Project. charri89@depaul.edu

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