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Exploring Data-Driven Advocacy in Home Health Care Work

Joy Ming, Hawi H Tolera, Jiamin Tu, Ella Yitzhaki, Chit Sum Eunice Ngai, Madeline Sterling, Ariel C Avgar, Aditya Vashistha, Nicola Dell

TL;DR

The paper investigates how data driven advocacy can elevate the voices of home care workers while mitigating privacy and burden risks. It presents a multi phase, IRB approved study that adapts the WeClock tool for home care, combining narrative and numeric data to capture invisible labor and inform individual, collective, and policy advocacy. Key findings reveal tensions between immediate individual benefits and long term collective gains, and show that aggregate data and advocacy aligned insights can empower organizing, policy campaigns, and improved care conditions, though scale and careful stewardship are required. The work offers strategies such as data plus approaches, advocate stewards, and goal tailored data collection to guide future data driven advocacy in care work and other low wage, frontline domains.

Abstract

This paper explores opportunities and challenges for data-driven advocacy to support home care workers, an often overlooked group of low-wage, frontline health workers. First, we investigate what data to collect and how to collect it in ways that preserve privacy and avoid burdening workers. Second, we examine how workers and advocates could use collected data to strengthen individual and collective advocacy efforts. Our qualitative study with 11 workers and 15 advocates highlights tensions between workers' desires for individual and immediate benefits and advocates' preferences to prioritize more collective and long-term benefits. We also uncover discrepancies between participants' expectations for how data might transform advocacy and their on-the-ground experiences collecting and using real data. Finally, we discuss future directions for data-driven worker advocacy, including combining different kinds of data to ameliorate challenges, leveraging advocates as data stewards, and accounting for workers' and organizations' heterogeneous goals.

Exploring Data-Driven Advocacy in Home Health Care Work

TL;DR

The paper investigates how data driven advocacy can elevate the voices of home care workers while mitigating privacy and burden risks. It presents a multi phase, IRB approved study that adapts the WeClock tool for home care, combining narrative and numeric data to capture invisible labor and inform individual, collective, and policy advocacy. Key findings reveal tensions between immediate individual benefits and long term collective gains, and show that aggregate data and advocacy aligned insights can empower organizing, policy campaigns, and improved care conditions, though scale and careful stewardship are required. The work offers strategies such as data plus approaches, advocate stewards, and goal tailored data collection to guide future data driven advocacy in care work and other low wage, frontline domains.

Abstract

This paper explores opportunities and challenges for data-driven advocacy to support home care workers, an often overlooked group of low-wage, frontline health workers. First, we investigate what data to collect and how to collect it in ways that preserve privacy and avoid burdening workers. Second, we examine how workers and advocates could use collected data to strengthen individual and collective advocacy efforts. Our qualitative study with 11 workers and 15 advocates highlights tensions between workers' desires for individual and immediate benefits and advocates' preferences to prioritize more collective and long-term benefits. We also uncover discrepancies between participants' expectations for how data might transform advocacy and their on-the-ground experiences collecting and using real data. Finally, we discuss future directions for data-driven worker advocacy, including combining different kinds of data to ameliorate challenges, leveraging advocates as data stewards, and accounting for workers' and organizations' heterogeneous goals.

Paper Structure

This paper contains 46 sections, 6 figures, 3 tables.

Table of Contents

  1. Introduction
  2. Related Work
  3. Home Care Work in the United States
  4. Data-Driven Advocacy
  5. Quantifying Work
  6. Legitimacy or Surveillance
  7. Worker Burden
  8. Our Contribution
  9. Methods
  10. Research Partners
  11. Participants
  12. Study Procedure
  13. Intervention Design
  14. (A) Advocate Ideation Sessions
  15. (B) Iterative Design with Workers
  16. ...and 31 more sections

Figures (6)

  • Figure 1: Timeline view of study activities, including the intervention design (detailed in Section \ref{['sec:intervention-design']}) and pilot (detailed in Section \ref{['sec:field-study']}) phases, with advocate sessions (green), worker trials (blue), and coding/computation (yellow).
  • Figure 2: Screenshots showing functions of the intervention.
  • Figure 3: Storyboard depicting the proposed data collection flow presented in the advocate focus groups.
  • Figure 4: Summary visualization of an individual's journal entries throughout the study period
  • Figure 5: Counts of examples and impacts invisible work reported in daily journal entries across workers
  • ...and 1 more figures