Envisioning Possibilities and Challenges of AI for Personalized Cancer Care
Pages 415 - 421
Abstract
The use of Artificial Intelligence (AI) in healthcare, including in caring for cancer survivors, has gained significant interest. However, gaps remain in our understanding of how such AI systems can provide care, especially for ethnic and racial minority groups who continue to face care disparities. Through interviews with six cancer survivors, we identify critical gaps in current healthcare systems such as a lack of personalized care and insufficient cultural and linguistic accommodation. AI, when applied to care, was seen as a way to address these issues by enabling real-time, culturally aligned, and linguistically appropriate interactions. We also uncovered concerns about the implications of AI-driven personalization, such as data privacy, loss of human touch in caregiving, and the risk of echo chambers that limit exposure to diverse information. We conclude by discussing the trade-offs between AI-enhanced personalization and the need for structural changes in healthcare that go beyond technological solutions, leading us to argue that we should begin by asking, ''Why personalization?''
References
[1]
Zeeshan Ahmed, Khalid Mohamed, Saman Zeeshan, and XinQi Dong. 2020. Artificial intelligence with multi-functional machine learning platform development for better healthcare and precision medicine. Database, Vol. 2020 (2020), baaa010.
[2]
Astrid Bertrand, Tiphaine Viard, Rafik Belloum, James R Eagan, and Winston Maxwell. 2023. On selective, mutable and dialogic XAI: A review of what users say about different types of interactive explanations. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems. 1--21.
[3]
Abeba Birhane, William Isaac, Vinodkumar Prabhakaran, Mark Diaz, Madeleine Clare Elish, Iason Gabriel, and Shakir Mohamed. 2022. Power to the people? opportunities and challenges for participatory AI. Equity and Access in Algorithms, Mechanisms, and Optimization (2022), 1--8.
[4]
Eleanor R Burgess, Elizabeth Kaziunas, and Maia Jacobs. 2022. Care Frictions: A Critical Reframing of Patient Noncompliance in Health Technology Design. Proceedings of the ACM on Human-Computer Interaction, Vol. 6, CSCW2 (2022), 1--31.
[5]
Donald O Case, James E Andrews, J David Johnson, and Suzanne L Allard. 2005. Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. Journal of the Medical Library Association, Vol. 93, 3 (2005), 353.
[6]
Prateek Chanda, Amogh Wagh, Jemimah A Johnson, Swaraj Renghe, Vageesh Chandramouli, George Mathews, Sapna Behar, Poornima Bhola, Girish Rao, Paulomi Sudhir, et al. 2021. MINDNOTES: A Mobile Platform to enable users to break stigma around mental health and connect with therapists. In Companion Publication of the 2021 Conference on Computer Supported Cooperative Work and Social Computing. 213--217.
[7]
Mei Chen and Michel Decary. 2020. Artificial intelligence in healthcare: An essential guide for health leaders. In Healthcare management forum, Vol. 33. SAGE Publications Sage CA: Los Angeles, CA, 10--18.
[8]
Yunan Chen, Victor Ngo, and Sun Young Park. 2013. Caring for caregivers: designing for integrality. In Proceedings of the 2013 conference on Computer supported cooperative work. 91--102.
[9]
Claire C Conley, Amy K Otto, Glynnis A McDonnell, and Kenneth P Tercyak. 2021. Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy. Translational behavioral medicine, Vol. 11, 11 (2021), 2018--2032.
[10]
Bleiz Macsen Del Sette, Dawn Carnes, and Charalampos Saitis. 2023. Sound of Care: Towards a Co-Operative AI Digital Pain Companion to Support People with Chronic Primary Pain. In Companion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing. 283--288.
[11]
Fernando Delgado, Stephen Yang, Michael Madaio, and Qian Yang. 2023. The Participatory Turn in AI Design: Theoretical Foundations and the Current State of Practice. In Proceedings of the 3rd ACM Conference on Equity and Access in Algorithms, Mechanisms, and Optimization. 1--23.
[12]
Cyrille Delpierre and Thomas Lefèvre. 2023. Precision and personalized medicine: What their current definition says and silences about the model of health they promote. Implication for the development of personalized health. Frontiers in Sociology, Vol. 8 (2023), 1112159.
[13]
Christie R Eheman, Zahava Berkowitz, Judith Lee, Supriya Mohile, Jason Purnell, Elisa Marie Rodriguez, Joseph Roscoe, David Johnson, Jeffrey Kirshner, and Gary Morrow. 2009. Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. Journal of health communication, Vol. 14, 5 (2009), 487--502.
[14]
Pouyan Esmaeilzadeh. 2020. Use of AI-based tools for healthcare purposes: a survey study from consumers? perspectives. BMC medical informatics and decision making, Vol. 20 (2020), 1--19.
[15]
Lynn Westbrook Ina Fourie. 2015. A feminist information engagement framework for gynecological cancer patients: The case of cervical cancer. Journal of Documentation, Vol. 71, 4 (2015), 752--774.
[16]
Aakash Gautam. 2024. Reconfiguring Participatory Design to Resist AI Realism. Proceedings of the 18th Participatory Design Conference -- Volume 2 (2024).
[17]
Narayan Ghiotti, David Clulow, Serene Cheon, Kevin Cui, and Hyo Kang. 2023. Prototyping Kodi: Defining Design Requirements to Develop a Virtual Chat-bot for Autistic Children and Their Caregivers. In Companion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing. 126--131.
[18]
Bradford W Hesse, David E Nelson, Gary L Kreps, Robert T Croyle, Neeraj K Arora, Barbara K Rimer, and Kasisomayajula Viswanath. 2005. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Archives of internal medicine, Vol. 165, 22 (2005), 2618--2624.
[19]
Donald M Hilty, Allison Crawford, John Teshima, Sarah E Nasatir-Hilty, John Luo, Liliana SM Chisler, Yvette SM Gutierrez Hilty, Mark E Servis, Regina Godbout, Russell F Lim, et al. 2021. Mobile health and cultural competencies as a foundation for telehealth care: scoping review. Journal of Technology in Behavioral Science, Vol. 6 (2021), 197--230.
[20]
Maia Jacobs, James Clawson, and Elizabeth D Mynatt. 2014. Cancer navigation: opportunities and challenges for facilitating the breast cancer journey. In Proceedings of the 17th ACM conference on Computer supported cooperative work & social computing. 1467--1478.
[21]
Joanne E Jordan, Rachelle Buchbinder, and Richard H Osborne. 2010. Conceptualising health literacy from the patient perspective. Patient education and counseling, Vol. 79, 1 (2010), 36--42.
[22]
Takeshi Kamita, Atsuko Matsumoto, Boyu Sun, and Tomoo Inoue. 2020. Promotion of continuous use of a self-guided mental healthcare system by a chatbot. In Companion Publication of the 2020 Conference on Computer Supported Cooperative Work and Social Computing. 293--298.
[23]
Waqas Ullah Khan and Emily Seto. 2023. A Do No Harm Novel Safety Checklist and Research Approach to Determine Whether to Launch an Artificial Intelligence-Based Medical Technology: Introducing the Biological-Psychological, Economic, and Social (BPES) Framework. Journal of medical Internet research, Vol. 25 (2023), e43386.
[24]
Khalil Kimiafar, Masoumeh Sarbaz, Seyyed Mohammad Tabatabaei, Kosar Ghaddaripouri, Atefeh Sadat Mousavi, Marziyeh Raei Mehneh, and Seyyedeh Fatemeh Mousavi Baigi. 2023. Artificial intelligence literacy among healthcare professionals and students: a systematic review. Frontiers in Health Informatics, Vol. 12 (2023), 168.
[25]
Jichao Liu, Chengpan Liu, Buzheng Shan, and Ömer S Ganiyusufoglu. 2024. A Computer-assisted Interpreting System for Multilingual Conferences Based on Automatic Speech Recognition. IEEE Access (2024).
[26]
Alex J Mitchell, David W Ferguson, John Gill, Jim Paul, and Paul Symonds. 2013. Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. The lancet oncology, Vol. 14, 8 (2013), 721--732.
[27]
Siddhartha Mukherjee. 2010. The emperor of all maladies: a biography of cancer. Simon and Schuster.
[28]
Elizabeth L Murnane, Tara G Walker, Beck Tench, Stephen Voida, and Jaime Snyder. 2018. Personal informatics in interpersonal contexts: towards the design of technology that supports the social ecologies of long-term mental health management. Proceedings of the ACM on Human-Computer Interaction, Vol. 2, CSCW (2018), 1--27.
[29]
Tom Nadarzynski, Nicky Knights, Deborah Husbands, Cynthia A Graham, Carrie D Llewellyn, Tom Buchanan, Ian Montgomery, and Damien Ridge. 2024. Achieving health equity through conversational AI: A roadmap for design and implementation of inclusive chatbots in healthcare. PLOS Digital Health, Vol. 3, 5 (2024), e0000492.
[30]
Sarah Nikkhah, Swaroop John, Krishna Supradeep Yalamarti, Emily L Mueller, and Andrew D Miller. 2022. Family Care Coordination in the Children's Hospital: Phases and Cycles in the Pediatric Cancer Caregiving Journey. Proceedings of the ACM on Human-Computer Interaction, Vol. 6, CSCW2 (2022), 1--30.
[31]
Sarah Nikkhah, Akash Uday Rode, Priyanjali Mittal, Neha K Kulkarni, Salonee Nadkarni, Emily L Mueller, and Andrew D Miller. 2022. "I feel like I need to split myself in half": Using Role Theory to Design for Parents as Caregiving Teams in the Children's Hospital. In Companion Publication of the 2022 Conference on Computer Supported Cooperative Work and Social Computing. 115--120.
[32]
Trishan Panch, Heather Mattie, and Rifat Atun. 2019. Artificial intelligence and algorithmic bias: implications for health systems. Journal of global health, Vol. 9, 2 (2019).
[33]
Enea Parimbelli, Szymon Wilk, Ronald Cornet, Pawel Sniatala, K Sniatala, SLC Glaser, Itske Fraterman, Annelies H Boekhout, Manuel Ottaviano, and Mor Peleg. 2021. A review of AI and Data Science support for cancer management. Artificial Intelligence in Medicine, Vol. 117 (2021), 102111.
[34]
Manali I Patel, Ana Maria Lopez, William Blackstock, Katherine Reeder-Hayes, E Allyn Moushey, Jonathan Phillips, and William Tap. 2020. Cancer disparities and health equity: a policy statement from the American Society of Clinical Oncology. Journal of Clinical Oncology, Vol. 38, 29 (2020), 3439--3448.
[35]
Gerald W Prager, Sofia Braga, Branislav Bystricky, Camilla Qvortrup, Carmen Criscitiello, Ece Esin, Gabe S Sonke, GuillemArgilés Martínez, Jean-Sebastian Frenel, Michalis Karamouzis, et al. 2018. Global cancer control: responding to the growing burden, rising costs and inequalities in access. ESMO open, Vol. 3, 2 (2018), e000285.
[36]
Aditya kumar Purohit, Aditya Upadhyaya, and Adrian Holzer. 2023. Chatgpt in healthcare: Exploring ai chatbot for spontaneous word retrieval in aphasia. In Companion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing. 1--5.
[37]
Casey Randazzo, Carol F Scott, Rosanna Bellini, Tawfiq Ammari, Michael Ann Devito, Bryan Semaan, and Nazanin Andalibi. 2023. Trauma-Informed Design: A Collaborative Approach to Building Safer Online Spaces. In Companion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing. 470--475.
[38]
Johnny Salda na. 2021. The coding manual for qualitative researchers. (2021).
[39]
Supraja Sankaran, Kris Luyten, Dominique Hansen, Paul Dendale, and Karin Coninx. 2019. Enhancing patient motivation through intelligibility in cardiac tele-rehabilitation. Interacting with Computers, Vol. 31, 2 (2019), 122--137.
[40]
Anu Maria Sebastian and David Peter. 2022. Artificial intelligence in cancer research: trends, challenges and future directions. Life, Vol. 12, 12 (2022), 1991.
[41]
Allan Ben Smith, Adeola Bamgboje-Ayodele, Sharuja Jegathees, Phyllis Butow, Britt Klein, Marj Salter, Jane Turner, Joanna Fardell, Belinda Thewes, Louise Sharpe, et al. 2024. Feasibility and preliminary efficacy of iConquerFear: a self-guided digital intervention for fear of cancer recurrence. Journal of Cancer Survivorship, Vol. 18, 2 (2024), 425--438.
[42]
Diva Smriti and Jina Huh-Yoo. 2023. Bringing Emotions into Practice: A Framework for AI Design to Support Emotion Work. In Companion Publication of the 2023 Conference on Computer Supported Cooperative Work and Social Computing. 293--297.
[43]
Isabelle Soerjomataram and Freddie Bray. 2021. Planning for tomorrow: global cancer incidence and the role of prevention 2020--2070. Nature reviews Clinical oncology, Vol. 18, 10 (2021), 663--672.
[44]
Ting Song, Ping Yu, and Zhenyu Zhang. 2022. Design features and health outcomes of mHealth applications for patient self-management of asthma: a systematic review: mHealth apps for asthma self-management. Proceedings of the 2022 Australasian Computer Science Week (2022), 153--160.
[45]
Jina Suh, Spencer Williams, Jesse R Fann, James Fogarty, Amy M Bauer, and Gary Hsieh. 2020. Parallel journeys of patients with cancer and depression: Challenges and opportunities for technology-enabled collaborative care. Proceedings of the ACM on Human-computer Interaction, Vol. 4, CSCW1 (2020), 1--36.
[46]
Richard Sullivan, Jeffrey Peppercorn, Karol Sikora, John Zalcberg, Neal J Meropol, Eitan Amir, David Khayat, Peter Boyle, Philippe Autier, Ian F Tannock, et al. 2011. Delivering affordable cancer care in high-income countries. The lancet oncology, Vol. 12, 10 (2011), 933--980.
[47]
Briony Swire-Thompson, David Lazer, et al. 2020. Public health and online misinformation: challenges and recommendations. Annu Rev Public Health, Vol. 41, 1 (2020), 433--451.
[48]
Will L Tarver and David A Haggstrom. 2019. The use of cancer-specific patient-centered technologies among underserved populations in the United States: systematic review. Journal of medical Internet research, Vol. 21, 4 (2019), e10256.
[49]
Nina M Tauber, Mia S OToole, Andreas Dinkel, Jacqueline Galica, Gerry Humphris, Sophie Lebel, Christine Maheu, Gozde Ozakinci, Judith Prins, Louise Sharpe, et al. 2019. Effect of psychological intervention on fear of cancer recurrence: a systematic review and meta-analysis. Journal of clinical oncology, Vol. 37, 31 (2019), 2899--2915.
[50]
Lara Whitehead, Jason Talevski, Farhad Fatehi, and Alison Beauchamp. 2023. Barriers to and facilitators of digital health among culturally and linguistically diverse populations: qualitative systematic review. Journal of medical Internet research, Vol. 25 (2023), e42719.
[51]
Souleima Zghab, Gabrielle Pagé, Mélanie Lussier, Sylvain Bédard, and Jinghui Cheng. 2024. " It's Sink or Swim": Exploring Patients' Challenges and Tool Needs for Self-Management of Postoperative Acute Pain. In Proceedings of the CHI Conference on Human Factors in Computing Systems. 1--11.
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