Presentation given at the Advancing Research 2020 conference, on the topic of "Lessening the Research Burden on Vulnerable Communities." This talk covers specific approaches to employ when working with vulnerable populations, starting with a definition of vulnerability, then discussing how to ensure that researchers remain safe, respectful, fair, and culturally appropriate. This includes: choosing the right research methods for the participants, topic, and context at hand; recruiting and compensating research participants; ensuring research participants are aware of their rights and potential risks for participating in the research; conducting research in a trauma-informed way; managing participant data by ensuring collected information doesn’t put them at risk; communicating design research findings in a respectful manner.

1. I acknowledge that the city of Oakland, from where I am presenting
today, sits in the territory of Huichin, part of the traditional, ancestral,
unceded territory of the Chochenyo Ohlone, the successors of the historic
and sovereign Verona Band of Alameda County.
The Chochenyo Ohlone people are still here, and continue to live on this
land, despite a history of erasure, forced removal, and genocide of
Indigenous peoples. Naming is an exercise in power when what is being
named has been historically erased.
Please take a moment to consider the many legacies of violence,
displacement, migration, and settlement that bring us together today.
And please join me in uncovering such truths at any and all public events.

2. Lessening the Research
Burden on Vulnerable
Communities
Sarah Fathallah
@SFath

4. What do we mean when
we talk about vulnerable
communities?
Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath

5. Vulnerability is the susceptibility to experiencing harm.
Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath

6. Vulnerability is the susceptibility to experiencing harm.
Physical vulnerability is the susceptibility to experiencing bodily harm.
Emotional vulnerability is the susceptibility to experiencing emotional deregulation.
Social vulnerability is the susceptibility to experiencing social exclusion.
Economic vulnerability is the susceptibility to experiencing economic shocks.
Environmental vulnerability is the susceptibility to experiencing environmental hazards.
... is the susceptibility to experiencing ...
Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath
Cognitive vulnerability is the susceptibility to experiencing psychological issues.
Legal vulnerability is the susceptibility to experiencing legal restrictions.

9. In what ways can we make
research less burdensome
for vulnerable communities?
Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath

10. Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath
The different stages
of design research
1. Developing research tools and methodology
2. Recruiting and compensating participants
3. Seeking consent and conducting research
4. Managing and communicating research data

11. Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath
Developing
research tools
and methodology
1

12. Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath
Expectations
Long, in-depth,
semi-structured,
interviews in participant’s
home or place of work

13. Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath
Expectations
Long, in-depth,
semi-structured,
interviews in participant’s
home or place of work
Reality
• Appropriateness and
suitability of interviews?
• Availability and safety of home
or place of work?

18. Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath
Recruiting and
compensating
participants
2

19. Expectations
Recruiting participants
upfront, and offering
individual incentives for
their participation
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

20. Expectations
Recruiting participants
upfront, and offering
individual incentives for
their participation
Reality
• Possibility of upfront recruiting?
• Restrictive types of incentives?
• Inadequacy of individual
incentives in collectivist
communities?
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

25. Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath
Seeking consent
and conducting
research
3

26. Expectations
Seeking informed consent,
conducting research, and
concluding by thanking
participants for their time
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

27. Expectations
Seeking informed consent,
conducting research, and
concluding by thanking
participants for their time
Reality
• Straightforwardness of consent?
• Possibility for issues to arise in
research session that researchers
are not equipped to address?
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

31. Managing and
communicating
research data
4
Lessening the Research Burden on Vulnerable Communities | Advancing Research 2020 | Sarah Fathallah, @SFath

32. Expectations
Anonymizing participants’
identifiable information,
heavily relying on
participant stories
and photographs
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

33. Expectations
Anonymizing participants’
identifiable information,
heavily relying on
participant stories
and photographs
Reality
• Ability to ensure identifiable
information is not traceable?
• Lack of agency from participants
in how their data or photographs
are used?
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

38. Relying on
“best practices”
Challenging
and evolving
those practices
Lessening the Research Burden on Vulnerable Communities Advancing Research 2020 | Sarah Fathallah, @SFath

39. Vulnerable communities
can least afford poor
research practices.

40. What does vulnerability
look like in your work?
Thank you.