Designing Devices for Vulnerable Populations: What Needs to Change?

Designing Devices for Vulnerable Populations: What Needs to Change?

Designing Devices for Vulnerable Populations: What Needs to Change? 789 444 IEEE Pulse
Author(s): Muhammad Hamid Zaman

The health and well-being of refugees, internally displaced persons (IDPs), and stateless communities are often at risk due to political, logistical, and security challenges associated with providing adequate and timely medical aid to the deserving groups [1]. These challenges are further exacerbated by the absence of context-appropriate technologies that can aid in diagnosis, management, and treatment of life-threatening illnesses. The health challenges faced by forcibly displaced communities are a product of unique factors ranging from conflict to climate change and are further complicated by the living conditions and the surrounding environment [2]. In these situations, there is a need for technologies that are safe, effective, reliable, unbiased, and appropriate for the cultural and economic context.

Unfortunately, technologies that are customized to address on-the-ground health challenges of the forcibly displaced are very few to begin with [3]. This is due to limited financing, donor funding, and grant support available to develop new context-appropriate technologies. Development of new technology is a long and expensive process, and one that has not gotten adequate attention from large funding institutions. Funding for improving public health of displaced communities is extremely limited and is most often directed at implementation and development and discovery. Additionally, lack of contextual awareness and training among the technology development sector, engineers, and researchers further suppresses research and development in this area. Finally, too often the emphasis by the development sector and the few funding agencies that operate in this space is on software development or digital solutions that cannot address all of the complex diagnostic needs of patients.

In addition to the above mentioned factors, there are additional aspects of medical and diagnostic technologies that are noteworthy. For example, it has been well established that many technologies do not perform equally across patients from different racial and ethnic backgrounds. The deeply troubling situation with pulse oximeters and their inaccuracy for people with darker skin was widely observed during the pandemic [4]. Similarly, lack of appreciation of the local cultural context, or sensitivity toward the ground realities, can create more harm than good. Eye scanner technologies used in a refugee camps in Jordan created anxiety and distrust, and have raised serious ethical questions about the program [5].

The consequence of these factors is that there is not only limited context-appropriate technology, but also the pipeline of new technologies is dry. As a result, the challenge of preventable cases of misdiagnosis or poor treatment strategies for the most vulnerable groups among the forcibly displaced continues unabated. A change in course is urgently needed. In order to address the above mentioned challenges, I propose a three-pronged approach to address these issues. These include a nuanced and contextual understanding of the health challenges faced by the forcibly displaced communities, engagement with the local communities, and a new model of how we approach the cost-benefit analysis of technology development, implementation, and impact on the health and well-being of forcibly displaced communities.

First, in order for us to change the status quo, we need a fundamental recognition that health challenges of the forcibly displaced are unique in important ways and hence require customized diagnostics that can perform in these settings. These myriad challenges could range from infection and colonization by new variants of pathogens to aspects of mental health and trauma that are understudied. Assuming that there are no new or unique health challenges results in no incentive to develop new diagnostics and innovate. It is also important to recognize that new research and development of technologies that may be customized for complex situations can have a knock-on effect and may in turn benefit communities other than those that are forcibly displaced.

Second, we need to prioritize engagement with local communities that have a deeper understanding of local context, culture, customs, and traditions that affect patient behavior and trust. Related to this is the necessity in bringing experts in humanities and social sciences during the technology ideation, design, and rollout process. Too often, we create metrics of success that are rooted only in a limited and myopic sense of technical specifications but fail to recognize the biases our technologies may have, or how these technologies may negatively impact the communities. This also requires bringing early prototypes to the field and learning from an embedded research approach [6].

Third, we need a new model of our cost-benefit analysis. The current approaches are largely focused on the investment costs in research, development, and rollout, which then evaluate the returns in a narrow manner. This leads, on one hand, to limited interest from funding agencies who may view the overall costs to be too high or focusing on cheaper technologies that may end up doing more harm and costing more in the long-term. An improved and holistic model that incorporates both the long-term benefits (e.g., increasing economic output, trust in health system, awareness about best practices, etc.) and the costs (e.g., mistrust, anxiety, toll on mental health, etc.) is likely to lead to a more sustainable change and yield the results that are desired.

Keeping the above mentioned approaches in view, there are ripe opportunities for improving the health of forcibly displaced communities. For example, diagnostics for viral infections have seen tremendous interest and support during the COVID-19 pandemic and have opened up new opportunities for early diagnosis of not just viral infections but for other kinds of ailments and improving public health [7]. Yet, inequity around access is not just an issue of financing but also requires understanding context, creating avenues for local integration, and improving device design that works in the local environment. Similarly, diagnostics developed for wastewater surveillance in high income countries [8] can provide new insights and warnings about disease outbreaks among vulnerable communities forced to flee and live in camps and urban slums. Fortunately, foundational discoveries for many of these technologies are already in place; what is needed is local engagement, contextual understanding, and a long-term commitment to health and well-being of all people.

Biomedical technologies have saved millions of lives. Their global impact has been phenomenal, yet we must also recognize that our current models are insufficient in bringing healing to the millions who are forcibly displaced. This complex challenge requires reflection, ethical analysis, and course-correction of existing strategies. Technologists, developers, scientists, and researchers, with inclusive teams, a strong sense of ethics, and an improved understanding of context can save the lives of those who are in urgent need of quality, adequate, and dignified health care.

References

  1. Doctors Without Borders, “Voice from the field: The massive logistical challenges of working in Iraq,” Feb. 24, 2016. [Online]. Available: https://www.doctorswithoutborders.org/latest/voice-field-massive-logistical-challenges-working-iraq
  2. M. H. Zaman, “Engineering a holistic response to the global crisis of forced displacement,” IEEE Pulse, vol. 14, no. 1, pp. 22–24, Jan./Feb. 2023. [Online]. Available: https://www.embs.org/pulse/articles/engineering-a-holistic-response-to-the-global-crisis-of-forced-displacement/
  3. D. Nadkarni et al., “Examining the need & potential for biomedical engineering to strengthen health care delivery for displaced populations & victims of conflict,” Conflict Health, vol. 11, pp. 1–4, Dec. 2017.
  4. R. Harris, “Devices used in COVID-19 treatment can give errors for patients with dark skin,” National Public Radio (NPR), Dec. 16, 2020. [Online]. Available: https://www.npr.org/sections/health-shots/2020/12/16/947226068/dark-skin-can-lead-to-errors-with-pulse-oximeters-used-in-covid-19-treatment
  5. N. Osseiran, “In Jordan, refugees scan irises to collect aid. But is it ethical?,” Reuters, Dec. 13, 2022. [Online]. Available: https://www.reuters.com/article/jordan-refugees-blockchain/feature-in-jordan-refugees-scan-irises-to-collect-aid-but-is-it-ethical-idUKL8N32R6GF
  6. J. Walley et al., “Embedded health service development and research: Why and how to do it (a ten-stage guide),” Health Res. Policy Syst., vol. 16, pp. 1–8, Dec. 2018.
  7. R. W. Peeling et al., “Diagnostics for COVID-19: Moving from pandemic response to control,” Lancet, vol. 399, no. 10326, pp. 757-768, 2022.
  8. H. R. Safford, K. Shapiro, and H. N. Bischel, “Wastewater analysis can be a powerful public health tool—if it’s done sensibly,” Proc. Nat. Acad. Sci., vol. 119, no. 6, 2022, Art. no. e2119600119.