Speculating with Care: Worker-centered Perspectives on Scale in a Chat-based Health Information Service
Authors: 
Naveena Karusala, Shirley Yan, Nupoor Rajkumar, Victoria G, Richard AndersonAuthors Info & Claims
Naveena Karusala, Shirley Yan, Nupoor Rajkumar, Victoria G, Richard AndersonAuthors Info & ClaimsArticle No.: 361, Pages 1 - 26
Abstract
Seeking to address barriers to in-person care, governments and non-governmental organizations (NGOs) globally have been pushing for scaling chat- or phone-based information services that rely on care workers to engage with users. Despite theoretical tensions between care and scale and the essential role of care workers, workers' perspective on scale and its impact on care provision is rarely centered early on in decisions to scale. In this paper, we examine care and scale from the perspective of medical support executives (MSEs) who support a chat-based health information service for maternal and child health deployed across multiple states in India. We draw on observations of MSEs' work, interviews with MSEs, NGO staff who implement the service, and families who use the service, and speculative design sessions conducted with MSEs. We find that by centering MSEs' perspectives, we can differentiate between growth of the relationships and heterogeneity that enable social impact, versus scale-thinking that promotes the decontextualization of care. We leverage our findings to discuss implications for scale and automation in chat-based health information services, including the importance of human connection, place, and support for care workers.
References
[1]
Mafruha Alam, Cathy Banwell, Anna Olsen, Kamalini Lokuge, et al. 2019. Patients and doctors perceptions of a mobile phone-based consultation service for maternal, neonatal, and infant health care in Bangladesh: a mixed-methods study. JMIR mHealth and uHealth, Vol. 7, 4 (2019), e11842.
[2]
Mohammad R Ali, Claire A Lawson, Angela M Wood, and Kamlesh Khunti. 2023. Addressing ethnic and global health inequalities in the era of artificial intelligence healthcare models: a call for responsible implementation. Journal of the Royal Society of Medicine (2023), 01410768231187734.
[3]
John W Ayers, Adam Poliak, Mark Dredze, Eric C Leas, Zechariah Zhu, Jessica B Kelley, Dennis J Faix, Aaron M Goodman, Christopher A Longhurst, Michael Hogarth, et al. 2023. Comparing physician and artificial intelligence chatbot responses to patient questions posted to a public social media forum. JAMA internal medicine (2023).
[4]
Peter Barron, Joanne Peter, Amnesty E LeFevre, Jane Sebidi, Marcha Bekker, Robert Allen, Annie Neo Parsons, Peter Benjamin, and Yogan Pillay. 2018. Mobile health messaging service and helpdesk for South African mothers (MomConnect): history, successes and challenges. BMJ global health, Vol. 3, Suppl 2 (2018), e000559.
[5]
Emily M Bender, Timnit Gebru, Angelina McMillan-Major, and Shmargaret Shmitchell. 2021. On the dangers of stochastic parrots: Can language models be too big?ï¿?ï¿?. In Proceedings of the 2021 ACM conference on fairness, accountability, and transparency. 610--623.
[6]
Aksel Biørn-Hansen and Maria Håkansson. 2018. Building momentum: Scaling up change in community organizations. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1--13.
[7]
Susanne Bødker, Henrik Korsgaard, and Joanna Saad-Sulonen. 2016. 'A Farmer, a Place and at least 20 Members': The Development of Artifact Ecologies in Volunteer-based Communities. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. ACM, 1142--1156.
[8]
Jeanne E Daniel, Willie Brink, Ryan Eloff, and Charles Copley. 2019. Towards automating healthcare question answering in a noisy multilingual low-resource setting. In Proceedings of the 57th Annual Meeting of the Association for Computational Linguistics. 948--953.
[9]
Hamid R Ekbia and Bonnie A Nardi. 2017. Heteromation, and other stories of computing and capitalism. MIT Press.
[10]
Matthew Engelhard, Charles Copley, Jacqui Watson, Yogan Pillay, Peter Barron, and Amnesty Elizabeth LeFevre. 2018. Optimising mHealth helpdesk responsiveness in South Africa: towards automated message triage. BMJ global health, Vol. 3, Suppl 2 (2018), e000567.
[11]
Paul Farmer. 2008. Challenging orthodoxies: the road ahead for health and human rights. health and human rights (2008), 5--19.
[12]
Nancy Folbre. 2006. Demanding quality: Worker/consumer coalitions and high road strategies in the care sector. Politics & Society, Vol. 34, 1 (2006), 11--32.
[13]
Sarah E Fox, Vera Khovanskaya, Clara Crivellaro, Niloufar Salehi, Lynn Dombrowski, Chinmay Kulkarni, Lilly Irani, and Jodi Forlizzi. 2020. Worker-centered design: Expanding HCI methods for supporting labor. In Extended abstracts of the 2020 CHI conference on human factors in computing systems. 1--8.
[14]
Sarah E Fox, Samantha Shorey, Esther Y Kang, Dominique Montiel Valle, and Estefania Rodriguez. 2023. Patchwork: the hidden, human labor of AI integration within essential work. Proceedings of the ACM on Human-Computer Interaction, Vol. 7, CSCW1 (2023), 1--20.
[15]
Danielle Gallegos, Ceridwen Cromack, and Karen J Thorpe. 2018. Can a phone call make a difference? Breastfeeding self-efficacy and nurse responses to motherâ?'s calls for help. Journal of Child Health Care, Vol. 22, 3 (2018), 433--446.
[16]
Mary L Gray and Siddharth Suri. 2019. Ghost work: How to stop Silicon Valley from building a new global underclass. Eamon Dolan Books.
[17]
Alex Hanna and Tina M Park. 2020. Against scale: Provocations and resistances to scale thinking. arXiv preprint arXiv:2010.08850 (2020).
[18]
Stefan Harrer. 2023. Attention is not all you need: the complicated case of ethically using large language models in healthcare and medicine. EBioMedicine, Vol. 90 (2023).
[19]
Azra Ismail and Neha Kumar. 2021. AI in global health: the view from the front lines. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1--21.
[20]
Gautam Ivatury, Jesse Moore, and Alison Bloch. 2009. A doctor in your pocket: health hotlines in developing countries. Innovations: Technology, Governance, Globalization, Vol. 4, 1 (2009), 119--153.
[21]
Wura Jacobs and Omolola E Adepoju. 2023. Will Technology Such As ChatGPT Improve Health Care Or Exacerbate Disparities? Health Affairs Forefront (2023).
[22]
Esther Y Kang and Sarah E Fox. 2022. Stories from the Frontline: Recuperating Essential Worker Accounts of AI Integration. In Designing Interactive Systems Conference. 58--70.
[23]
Naveena Karusala, Azra Ismail, Karthik S Bhat, Aakash Gautam, Sachin R Pendse, Neha Kumar, Richard Anderson, Madeline Balaam, Shaowen Bardzell, Nicola J Bidwell, et al. 2021a. The future of care work: towards a radical politics of care in CSCW research and practice. In Companion Publication of the 2021 Conference on Computer Supported Cooperative Work and Social Computing. 338--342.
[24]
Naveena Karusala, David Odhiambo Seeh, Cyrus Mugo, Brandon Guthrie, Megan A Moreno, Grace John-Stewart, Irene Inwani, Richard Anderson, and Keshet Ronen. 2021b. That courage to encourage: Participation and Aspirations in Chat-based Peer Support for Youth Living with HIV. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1--17.
[25]
Naveena Karusala, Ding Wang, and Jacki O'Neill. 2020. Making chat at home in the hospital: Exploring chat use by nurses. In Proceedings of the 2020 chi conference on human factors in computing systems. 1--15.
[26]
Naveena Karusala, Shirley Yan, and Richard Anderson. 2023. Unsettling Care Infrastructures: From the Individual to the Structural in a Digital Maternal and Child Health Intervention. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems. 1--16.
[27]
Junhan Kim, Jana Muhic, Lionel Peter Robert, and Sun Young Park. 2022. Designing Chatbots with Black Americans with Chronic Conditions: Overcoming Challenges against COVID-19. In CHI Conference on Human Factors in Computing Systems. 1--17.
[28]
T Koulouri, RD Macredie, and D Olakitan. 2022. Chatbots to Support Young Adults' Mental Health: an Exploratory Study of Acceptability. (2022).
[29]
Airi Lampinen, Ann Light, Chiara Rossitto, Anton Fedosov, Chiara Bassetti, Aniko Bernat, Penny Travlou, and Gabriela Avram. 2022. Processes of proliferation: Impact beyond scaling in sharing and collaborative economies. Proceedings of the ACM on Human-Computer Interaction, Vol. 6, GROUP (2022), 1--22.
[30]
Amanda Lazar, Hilaire J Thompson, Shih-Yin Lin, and George Demiris. 2018. Negotiating relation work with telehealth home care companionship technologies that support aging in place. Proceedings of the ACM on Human-Computer Interaction, Vol. 2, CSCW (2018), 1--19.
[31]
Yi-Chieh Lee, Naomi Yamashita, and Yun Huang. 2020a. Designing a Chatbot as a Mediator for Promoting Deep Self-Disclosure to a Real Mental Health Professional. Proc. ACM Hum.-Comput. Interact., Vol. 4, CSCW1, Article 31 (may 2020), 27 pages. https://doi.org/10.1145/3392836
[32]
Yi-Chieh Lee, Naomi Yamashita, Yun Huang, and Wai Fu. 2020b. "I Hear You, I Feel You": Encouraging Deep Self-Disclosure through a Chatbot. Association for Computing Machinery, New York, NY, USA, 112. https://doi.org/10.1145/3313831.3376175
[33]
Ann Light and Clodagh Miskelly. 2019. Platforms, scales and networks: Meshing a local sustainable sharing economy. Computer Supported Cooperative Work (CSCW), Vol. 28, 3 (2019), 591--626.
[34]
Wookjae Maeng and Joonhwan Lee. 2021. Designing a Chatbot for Survivors of Sexual Violence: Exploratory Study for Hybrid Approach Combining Rule-based Chatbot and ML-based Chatbot. In Asian CHI Symposium 2021. 160--166.
[35]
Alexandra Mateescu and Virginia Eubanks. 2021. Care bots are on the rise and replacing human caregivers.
[36]
Jacob Metcalf, Emanuel Moss, et al. 2019. Owning ethics: Corporate logics, silicon valley, and the institutionalization of ethics. Social Research: An International Quarterly, Vol. 86, 2 (2019), 449--476.
[37]
Elliot G. Mitchell, Rosa Maimone, Andrea Cassells, Jonathan N. Tobin, Patricia Davidson, Arlene M. Smaldone, and Lena Mamykina. 2021. Automated vs. Human Health Coaching: Exploring Participant and Practitioner Experiences. Proc. ACM Hum.-Comput. Interact., Vol. 5, CSCW1, Article 99 (apr 2021), 37 pages. https://doi.org/10.1145/3449173
[38]
Ishani Mondal, Kabir Ahuja, Mohit Jain, Jacki O Neil, Kalika Bali, and Monojit Choudhury. 2022. Global Readiness of Language Technology for Healthcare: What would it Take to Combat the Next Pandemic? arXiv preprint arXiv:2204.02790 (2022).
[39]
Jessica Morley and Luciano Floridi. 2023. Foundation Models are exciting, but they should not disrupt the foundations of caring. Available at SSRN (2023).
[40]
Gabriel Nicholas and Aliya Bhatia. 2023. Lost in Translation: Large Language Models in Non-English Content Analysis. arXiv preprint arXiv:2306.07377 (2023).
[41]
Siddharth Nishtala, Harshavardhan Kamarthi, Divy Thakkar, Dhyanesh Narayanan, Anirudh Grama, Aparna Hegde, Ramesh Padmanabhan, Neha Madhiwalla, Suresh Chaudhary, Balaraman Ravindran, et al. 2020. Missed calls, Automated Calls and Health Support: Using AI to improve maternal health outcomes by increasing program engagement. arXiv preprint arXiv:2006.07590 (2020).
[42]
Chinasa T Okolo, Srujana Kamath, Nicola Dell, and Aditya Vashistha. 2021. It cannot do all of my work: community health worker perceptions of AI-enabled mobile health applications in rural India. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1--20.
[43]
Ankur Pandey, Inshita Mutreja, Saru Brar, and Pushpendra Singh. 2020. Exploring Automated Q&A Support System for Maternal and Child Health in Rural India. In Proceedings of the 3rd ACM SIGCAS Conference on Computing and Sustainable Societies (Ecuador) (COMPASS '20). Association for Computing Machinery, New York, NY, USA, 349350. https://doi.org/10.1145/3378393.3402281
[44]
Sachin R Pendse, Faisal M Lalani, Munmun De Choudhury, Amit Sharma, and Neha Kumar. 2020. " Like Shock Absorbers": understanding the human infrastructures of technology-mediated mental health support. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. 1--14.
[45]
Sachin R Pendse, Amit Sharma, Aditya Vashistha, Munmun De Choudhury, and Neha Kumar. 2021. Can I Not Be Suicidal on a Sunday?: Understanding Technology-Mediated Pathways to Mental Health Support. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1--16.
[46]
Trevor Perrier, Nicola Dell, Brian DeRenzi, Richard Anderson, John Kinuthia, Jennifer Unger, and Grace John-Stewart. 2015. Engaging pregnant women in Kenya with a hybrid computer-human SMS communication system. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems. 1429--1438.
[47]
Trevor Perrier, Elizabeth K Harrington, Keshet Ronen, Daniel Matemo, John Kinuthia, Grace John-Stewart, Richard Anderson, and Jennifer A Unger. 2018. Male partner engagement in family planning SMS conversations at Kenyan health clinics. In Proceedings of the 1st ACM SIGCAS Conference on Computing and Sustainable Societies. 1--11.
[48]
Susan U Philips. 2016. Balancing the scales of justice in Tonga. Scale: Discourse and dimensions of social life (2016), 112--132.
[49]
Rifat Rahman, Md Rishadur Rahman, Nafis Irtiza Tripto, Mohammed Eunus Ali, Sajid Hasan Apon, and Rifat Shahriyar. 2021. AdolescentBot: Understanding Opportunities for Chatbots in Combating Adolescent Sexual and Reproductive Health Problems in Bangladesh. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1--15.
[50]
Noopur Raval. 2021. Interrupting invisibility in a global world. Interactions, Vol. 28, 4 (2021), 27--31.
[51]
Noopur Raval and Joyojeet Pal. 2019. Making a" Pro":'professionalism'after platforms in beauty-work. Proceedings of the ACM on Human-Computer Interaction, Vol. 3, CSCW (2019), 1--17.
[52]
Mariana Salgado, Helena Sustar, and Michail Galanakis. 2015. Designing With ImmigrantsWhen Emotions Run High. In 11th Academy of Design Conference. The Value of Design Research. Paris, France.
[53]
Nithya Sambasivan and Rajesh Veeraraghavan. 2022. The Deskilling of Domain Expertise in AI Development. In CHI Conference on Human Factors in Computing Systems. 1--14.
[54]
Teven Le Scao, Angela Fan, Christopher Akiki, Ellie Pavlick, Suzana Ilić, Daniel Hesslow, Roman Castagné, Alexandra Sasha Luccioni, Francc ois Yvon, Matthias Gallé, et al. 2022. Bloom: A 176b-parameter open-access multilingual language model. arXiv preprint arXiv:2211.05100 (2022).
[55]
Nick Seaver. 2021. Care and scale: decorrelative ethics in algorithmic recommendation. Cultural Anthropology, Vol. 36, 3 (2021), 509--537.
[56]
Anubha Singh and Tina Park. 2022. Automating Care: Online Food Delivery Work During the CoVID-19 Crisis in India. In 2022 ACM Conference on Fairness, Accountability, and Transparency. 160--172.
[57]
Karan Singhal, Shekoofeh Azizi, Tao Tu, S Sara Mahdavi, Jason Wei, Hyung Won Chung, Nathan Scales, Ajay Tanwani, Heather Cole-Lewis, Stephen Pfohl, et al. 2023 a. Large language models encode clinical knowledge. Nature (2023), 1--9.
[58]
Karan Singhal, Tao Tu, Juraj Gottweis, Rory Sayres, Ellery Wulczyn, Le Hou, Kevin Clark, Stephen Pfohl, Heather Cole-Lewis, Darlene Neal, et al. 2023 b. Towards expert-level medical question answering with large language models. arXiv preprint arXiv:2305.09617 (2023).
[59]
Lucy A Suchman. 1987. Plans and situated actions: The problem of human-machine communication. Cambridge university press.
[60]
Gareth Terry and Nikki Hayfield. 2020. Reflexive thematic analysis. In Handbook of qualitative research in education. Edward Elgar Publishing, 430--441.
[61]
Arun James Thirunavukarasu, Darren Shu Jeng Ting, Kabilan Elangovan, Laura Gutierrez, Ting Fang Tan, and Daniel Shu Wei Ting. 2023. Large language models in medicine. Nature Medicine (2023), 1--11.
[62]
Karen Thorpe, Susan Danby, Ceridwen Cromack, and Danielle Gallegos. 2020. Supporting, failing to support and undermining breastfeeding self-efficacy: Analysis of helpline calls. Maternal & child nutrition, Vol. 16, 2 (2020), e12919.
[63]
Karen Thorpe, Elena Jansen, Cerdiwen Cromack, and Danielle Gallegos. 2018. Can a call make a difference? Measured change in womenâ?'s breastfeeding self-efficacy across call interactions on a telephone helpline. Maternal and Child Health Journal, Vol. 22, 12 (2018), 1761--1770.
[64]
E Topol. 2023. When MD Is a machine doctor.
[65]
Emily Tseng, Mehrnaz Sabet, Rosanna Bellini, Harkiran Kaur Sodhi, Thomas Ristenpart, and Nicola Dell. 2022. Care Infrastructures for Digital Security in Intimate Partner Violence. In CHI Conference on Human Factors in Computing Systems. 1--20.
[66]
Anna Lowenhaupt Tsing. 2012. On NonscalabilityThe Living World Is Not Amenable to Precision-Nested Scales. Common knowledge, Vol. 18, 3 (2012), 505--524.
[67]
Ina Wagner. 1995. The Politics of Women's Work in Computerized Environments. European Journal of Women's Studies, Vol. 2, 3 (1995), 295--314.
[68]
Ding Wang, Santosh D Kale, and Jacki O'Neill. 2020. Please call the specialism: Using WeChat to support patient care in China. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. 1--13.
[69]
Ding Wang, Shantanu Prabhat, and Nithya Sambasivan. 2022. Whose AI Dream? In search of the aspiration in data annotation. In CHI Conference on Human Factors in Computing Systems. 1--16.
[70]
Richmond Y. Wong. 2021. Using Design Fiction Memos to Analyze UX Professionals Values Work Practices: A Case Study Bridging Ethnographic and Design Futuring Methods. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (Yokohama, Japan) (CHI '21). Association for Computing Machinery, New York, NY, USA, Article 93, 18 pages. https://doi.org/10.1145/3411764.3445709
[71]
Richmond Y. Wong, Vera Khovanskaya, Sarah E. Fox, Nick Merrill, and Phoebe Sengers. 2020. Infrastructural Speculations: Tactics for Designing and Interrogating Lifeworlds. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (Honolulu, HI, USA) (CHI '20). Association for Computing Machinery, New York, NY, USA, 115. https://doi.org/10.1145/3313831.3376515
[72]
Deepika Yadav, Kirti Dabas, Prerna Malik, Anushka Bhandari, and Pushpendra Singh. 2022. Should I visit the clinic: Analyzing WhatsApp-mediated Online Health Support for Expectant and New Mothers in Rural India. In CHI Conference on Human Factors in Computing Systems. 1--20.
[73]
Deepika Yadav, Prerna Malik, Kirti Dabas, and Pushpendra Singh. 2019. Feedpal: Understanding opportunities for chatbots in breastfeeding education of women in india. Proceedings of the ACM on Human-Computer Interaction, Vol. 3, CSCW (2019), 1--30.
[74]
Xi Yang, Aokun Chen, Nima PourNejatian, Hoo Chang Shin, Kaleb E Smith, Christopher Parisien, Colin Compas, Cheryl Martin, Anthony B Costa, Mona G Flores, et al. 2022. A large language model for electronic health records. NPJ Digital Medicine, Vol. 5, 1 (2022), 194.
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Published: 04 October 2023
Published in PACMHCI Volume 7, Issue CSCW2
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