“We Have to Be Advocates for Ourselves”: A Social-Ecological Approach to Mobile Health Design with Black Older Adults Living with Diabetes

Research Background and Issues

• Identified Problems or Challenges

  1. Researchers may inadvertently fall into the trap of "Health Equity Tourism" (HET), which refers to short-term community interventions by researchers without sustained commitment to the field of health equity. Such actions may reinforce structural racism, divert resources, and harm the community.
  2. Historically marginalized groups (e.g., low-income Black older adults) face significant barriers in healthcare and technology use, including structural racism, distrust of medical institutions, and unequal distribution of digital resources (digital divide).
  3. For diabetes patients, especially those with diabetic foot ulcers, such healthcare discrimination may exacerbate health inequities.

• Significance of the Problem
  Diabetes has a higher prevalence in low-income and communities of color, and its complications (e.g., diabetic foot ulcers) greatly impact quality of life and often lead to high mortality rates. Additionally, inequalities in healthcare and technology applications hinder effective medical management, further widening health disparities.

• Research Motivation and Related Work

  1. Existing health technology designs often adopt a "victim framework" or "deficit perspective," neglecting the culture, values, and capabilities of the community.
  2. A systematic understanding of social ecosystems and methods supporting sustained and ethical engagement have gained attention in health technology design in recent years.
  3. Considering the distrust of medical systems among Black older adults due to historical medical abuses (e.g., the Tuskegee Syphilis Study), this research seeks to promote more equitable approaches to health technology design.

Proposed Solutions

• Proposed Solutions by the Authors

  1. Introduce a health technology design approach based on social ecosystem theory, considering the interrelationships between individuals, communities, and broader structural systems.
  2. Provide new guidelines for designing health technologies to avoid potential health equity tourism in the HCI field.
  3. Establish long-term partnerships with low-income Black older adult communities to explore their needs and attitudes toward technology and health self-management.

• Innovative Aspects of the Solution

  1. Extends the traditional Bronfenbrenner ecological systems model by positioning researchers as part of the microsystem within the studied community to enhance reflective engagement.
  2. Proposes design strategies across social ecosystem levels, integrating the teaching of technology use and health management in specific contexts.
  3. Emphasizes combining curiosity and learning about technology with health interventions, rather than merely treating technology as a task-oriented tool.

• Implementation Steps and Key Techniques

  1. Long-term Community Engagement: The research team conducted two years of technology assistance ("tech help") and educational activities in the community to reduce social distance between researchers and the community.
  2. Qualitative Research: Semi-structured interviews with 25 community members were conducted to explore their technology usage, health knowledge, and attitudes toward the medical system.
  3. Data Analysis: Reflexive thematic analysis was employed to extract four main themes and 15 sub-themes from interviews and field observations.
  4. Social Ecosystem Mapping: Interview results were mapped onto a multi-level social ecosystem model to identify key interaction points between technology design and health management.

Research Outcomes

• Specific Achievements

  1. The study found that community members hold positive attitudes toward technology and are eager to learn new technologies, but face challenges due to age, health conditions, and socioeconomic status.
  2. Trust in medical institutions significantly influences health decisions, with self-advocacy and reliance on informal networks serving as important strategies to address distrust in healthcare systems.
  3. Seven guidelines were proposed for HCI researchers to avoid health equity tourism and foster more sustainable and ethical community collaborations.

• Advantages Compared to Existing Solutions

  1. Long-term Commitment: Avoided short-term, extractive research methods by building two years of community relationships.
  2. Dynamic Perspective: Studied not only the impact of technology on health but also the temporal dynamics and cultural dimensions of health and technology use.
  3. Interdisciplinary Collaboration: Balanced considerations of health education, cultural context, and technological capability gaps, emphasizing the researcher’s role within the community ecosystem.

• Experimental or Evaluation Results
  The study collected extensive feedback from community members through interviews and observations, summarized into four main themes: interest in and opportunities for learning technology, barriers posed by age and economic status, the role of internal and external control in health management, and the influence of medical trust on informal support networks.

• Limitations and Future Directions
  Limitations:

  1. The study sample was limited to a specific community in a southern U.S. city, which may not be universally generalizable.
  2. Some participants may have had higher self-efficacy or willingness to participate, potentially leading to sampling bias.

  Future Directions:

  1. Investigate how to effectively promote the social ecosystem-oriented design approach in different communities.
  2. Further explore how technology design can mitigate misinformation and enhance health literacy in communities.
  3. Develop more adaptive mHealth tools that optimize user experience as their health and technological proficiency evolve.

Through this study, the authors not only provide a new ecosystem framework for health technology design but also emphasize the responsibility of HCI researchers in community equity and ethics. They call for more long-term and in-depth social engagement pathways, making a significant contribution to advancing health equity.