Last mile research: a conceptual map

Figures & data

Figure 1. Conceptual point map of 64 statements in relative location based on number of times statements were co-sorted by 15 independent global health researchers.*

*Numbers correspond to the numbered text statements provided in Table 2. Centrally located points noted by the group are highlighted in red.

Figure 2. Point map of the project statements showing the central location of the statement: ‘13. Understanding the barriers to equitable health from the perspective of people in the last mile’.*

*Lines indicate number of times statement #13 was sorted in a similar conceptual group with other statements. Thinnest line indicates 1–2 times sorted together. Thickest lines indicate 13–15 times sorted together.

Table 1. Characteristics of the global health researchers who undertook the concept mapping process*

Characteristics** [n(%)]
Career Stage Early Middle Later	3 (20.0) 9 (60.0) 3 (20.0)	Population of Research Focus Ethnic minority Indigenous persons People living in extreme poverty Individuals with stigmatizing disease (e.g. HIV, Ebola) Refugees and Internally Displaced Remote Populations Persons Living with Disability Other	2 (13.3) 1 (6.7) 5 (33.0) 4 (26.7) 4 (26.7) 2 (13.3) 1 (6.7) 1 (6.7)
Type of Research Quantitative Qualitative Community-Based, Participatory Mixed-Methods	5 (33.3) 4 (26.7) 3 (20.0) 5 (33.3)	Research Locations of Focus Australia and Region Central and Northern Asia Europe North Africa and the Middle East Populations in the USA Populations in Canada Central and South America Southern Asia South East Asia Sub-Saharan Africa Global or not a specific continent No geographic focus	0 (0.0) 1 (6.7) 0 (0.0) 1 (6.7) 0 (0.0) 4 (26.7) 0 (0.0) 0 (0.0) 3 (20.0) 3 (20.0) 7 (46.7) 4 (26.7) 1 (6.7)
Disciplinary Background Anthropology Clinical Medicine Economics Environmental Studies Epidemiology Ethics Gender Studies Geography Political Studies Public & Population Health Research Methodology Sociology	2 (13.3) 5 (33.3) 1 (6.7) 2 (13.3) 7 (46.7) 2 (13.3) 4 (26.7) 2 (13.3) 2 (13.3) 7 (46.7) 7 (46.7) 2 (13.3)	Current University Location Queen’s University, CANADA Dartmouth College, USA	9 (60.0) 6 (40.0)

*Each participant self-identifies as a researcher who engages with people who might be considered ‘last mile populations’ in some conceptualization.

**Participants chose any responses that applied, thus columns do not always add to n = 15.

Table 2. The list of 64 unique statements provided by 15 global health researchers when prompted ‘Last mile research in global health includes, or should include, factors and characteristics such as…’

1. economic barriers at personal, social and system levels. 2. the effect of climate change on the area and people. 3. conflicts and how they affect the population. 4. consideration of social determinants of health. 5. examining the determinants of health and how to improve these factors. 6. consider structural determinants of health. 7. displacement and its effects. 8. looking upstream for factors that have led to the group being ‘last mile.’ 9. how geographic isolation affects the population. 10. social marginalization. 11. overcoming obstacles that have limited inclusion of last mile groups traditionally. 12. defining and measuring obstacles to desired health outcomes. 13. understanding the barriers to equitable health from the perspective of people in the last mile. 14. understanding stigmatization in the context. 15. access to research, services and information gathering to inform data & services. 16. understanding the community and whether one group is making another vulnerable. 17. the diversity of disability & engagement needs. 18. the influence of governmental structures and policies at the local level. 19. attention to reasons why the population is considered a ‘last mile’ population. 20. a focus on populations who have not always benefited from research or interventions before. 21. being culturally and contextually sensitive. 22. the centralization of public workers and services. 23. understanding the systemic biases and processes that contribute to individuals or groups being ‘last mile.’ 24. examining the systems of power that have led to marginalization. 25. mapping of transportation options, cost, frequency, and hazards. 26. generated, conducted and interpreted by those with full understanding of cultural, social, fiscal context. 27. empowerment of participants and communities. 28. community engagement throughout all stages of research 29. universal design for engagement principles. 30. participatory methods that can be conducted remotely. 31. equity centered research questions, methods, and sampling strategies. 32. methods that might have to be adapted or designed specifically.

33. addresses issues that encompass the entirety of patient cascade (prevention, treatment, health maintenance) 34. priorities that have been identified by last mile populations themselves. 35. reflexive thinking and practice throughout the research process. 36. multi-stakeholder buy-in from the beginning to extent possible. 37. attention to power dynamics in research. 38. a way to return research results to the affected population. 39. a focus on how research can be translated into action or improvements for last mile populations. 40. translation of research to build capacity and knowledge. 41. being thoughtful about integrative and end-of-grant knowledge translation. 42. community activism. 43. advocacy so that people in the last mile are not ‘left behind’ in development or health gains. 44. intentionally promoting health equity. 45. equity or fairness. 46. a focus on human rights. 47. being thoughtful around all ethical considerations. 48. social justice as an underlying value. 49. recognizing and valuing community members as experts in their own lives. 50. participatory approaches to meaningfully reach individuals and groups often overlooked or left out of traditional research. 51. telling stories and showing data that are often neglected. 52. finding and advocating for those without a political or social voice. 53. raising voices of the unheard. 54. children, women, the elderly and others in specific life stages relevant to the research. 55. people with disabilities, including invisible disabilities. 56. looking at specific hard to reach groups due to equity-related concerns. 57. involving local pharmacies, healers, midwives, birth-attendants. 58. indigenous people and any minority group in the context–religious, sexual, migrant, refugees etc. 59. most vulnerable populations that current efforts have not yet reached. 60. those who have traditionally been left out of ‘mainstream’ research. 61. populations who face multiple vulnerabilities that marginalize them further. 62. the security situation for vulnerable groups. 63. identifying the circumstances that have positioned people on the margins of healthcare systems. 64. using methods that privilege the voices of minority populations.

Figure 3. Final five cluster concept map for ‘last mile research’ determined through discussion and consensus with global health researchers

Table 3. Statements sorted into the five cluster areas

Cluster 1: Last Mile Populations – The Who 13. understanding the barriers to equitable health from the perspective of people in the last mile. 17. the diversity of disability & engagement needs. 20. a focus on populations who have not always benefited from research or interventions before. 52. finding and advocating for those without a political or social voice. 54. children, women, the elderly and others in specific life stages relevant to the research. 55. people with disabilities, including invisible disabilities. 56. looking at specific hard to reach groups due to equity-related concerns. 58. indigenous people and any minority group in the context–religious, sexual, migrant, refugees, and others. 59. most vulnerable populations that current efforts have not yet reached. 60. those who have traditionally been left out of ‘mainstream’ research. 61. populations who face multiple vulnerabilities that marginalize them further. Cluster 2: Research Methods/Approaches – The How 21. being culturally and contextually sensitive. 26. generated, conducted and interpreted by those with full understanding of cultural, social, fiscal context. 27. empowerment of participants and communities. 28. community engagement throughout research: conceptualization, design, implementation, dissemination. 29. universal design for engagement principles. 30. participatory methods that can be conducted remotely. 31. equity centered research questions, methods, and sampling strategies. 32. methods that might have to be adapted or designed specifically. 34. priorities that have been identified by last mile populations themselves. 35. reflexive thinking and practice throughout the research process. 36. multi-stakeholder buy-in from the beginning to extent possible. 37. attention to power dynamics in research. 38. a way to return research results to the affected population. 39. a focus on how research can be translated to action or improvements for last mile populations. 40. translation of research to build capacity and knowledge. 41. being thoughtful about integrative and end-of-grant knowledge translation. 42. community activism. 43. advocacy so that people in the last mile are not ‘left behind’ in development or health gains. 44. intentionally promoting health equity. 46. a focus on human rights. 47. being thoughtful around all ethical considerations. 48. social justice as an underlying value. 49. recognizing and valuing community members as experts in their own lives. 50. participatory approaches to meaningfully reach individuals and groups often overlooked or left out of traditional research. 51. telling stories and showing data that are often neglected. 53. raising voices of the unheard. 64. using methods that privilege the voices of minority populations.

Cluster 3: Health System – The Why Factors – The Why 12. defining and measuring obstacles to desired health outcomes. 15. access to research, services and information gathering to inform data & services. 22. the centralization of public workers and services. 25. mapping of transportation options, cost, frequency, and hazards. 33. addresses issues that encompass the entirety of the patient cascade from prevention to symptoms to restored health. 45. equity or fairness. 57. involving local pharmacies, healers, midwifes, birth-attendants. at personal, social and system levels. 6. consider structural determinants of health. 8. looking upstream for factors that have led to the group being ‘last mile.’ 10. social marginalization. 11. overcoming obstacles that have limited inclusion of last mile groups traditionally. 14. understanding stigmatization in the context. 16. understanding the community and whether one group is making another vulnerable or under-acknowledged. 18. the influence of governmental structures and policies at the local level. Cluster 4: Broader Environmental Factors – The Why 2. the effect of climate change on the area and people. 3. conflicts and how they affect the population. 7. displacement and its effects. 9. how geographic isolation affects the population. 62. the security situation for vulnerable groups. Cluster 5: Structural/Systemic Determinants – The Why 1. economic barriers 19. attention to reasons why the population is considered a ‘last mile’ population. 23. understanding the systemic biases and processes that contribute to individuals or groups being ‘last mile.’ 24. examining the systems of power that have led to marginalization. 4. consideration of social determinants of health. 5. examining the determinants of health and how to improve these factors. 63. identifying the circumstances that have positioned people on the margins of healthcare systems.

Cluster 1: Last Mile Populations – The Who.

Cluster 2: Research Methods and Approaches – The How.

Cluster 3: Health System Factors – The Why.

Cluster 4: Broader Environmental Factors – The Why.

Cluster 5: Structural/Systemic Factors – The Why.

Figure 4. Identifying next steps- average level of importance and current presence ratings for 64 ‘last mile research’ statements as determined by 15 global health researchers.*

*The graph indicates average rating among the 15 participants (1 not at all – 5 very high) for importance and current presence of each of the 64 statements. The correlation coefficient r measures the strength and direction of any linear relationship between the two variables. The yellow quadrant (D) indicates those statements that have high relative importance but currently low presence. These statements are listed to the right of the diagram and represent potential next steps.