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Explanation before Adoption: Supporting Informed Consent for Complex Machine Learning and IoT Health Platforms

Published: 16 April 2023 Publication History

Abstract

Explaining health technology platforms to non-technical members of the public is an important part of the process of informed consent. Complex technology platforms that deal with safety-critical areas are particularly challenging, often operating within private domains (e.g. health services within the home) and used by individuals with various understandings of hardware, software, and algorithmic design. Through two studies, the first an interview and the second an observational study, we questioned how experts (e.g. those who designed, built, and installed a technology platform) supported provision of informed consent by participants. We identify a wide range of tools, techniques, and adaptations used by experts to explain the complex SPHERE sensor-based home health platform, provide implications for the design of tools to aid explanations, suggest opportunities for interactive explanations, present the range of information needed, and indicate future research possibilities in communicating technology platforms.

References

[1]
Amina Adadi and Mohammed Berrada. 2018. Peeking inside the black-box: a survey on explainable artificial intelligence (XAI). IEEE Access, 6, 52138--52160.
[2]
Omar Almousa, Sebastian Mödersheim and Luca Viganò. 2015. Alice and bob: reconciling formal models and implementation. In Programming Languages with Applications to Biology and Security: Essays Dedicated to Pierpaolo Degano on the Occasion of His 65th Birthday. Chiara Bodei, Gianluigi Ferrari and Corrado Priami, editors. Springer International Publishing, Cham, 66--85. isbn: 978--3--319--25527--9.
[3]
Alejandro C. Arroliga, Sara Newman, David L. Longworth and James K. Stoller. 2002. Metaphorical medicine: using metaphors to enhance communication with patients who have pulmonary disease. Annals of Internal Medicine, 137, 5_Part_1, 376--379.
[4]
H. Bekker et al. 1999. Informed decision making: an annotated bibliography and systematic review. Health Technol Assess, 3, 1, 1--156.
[5]
Lena Börjeson, Mattias Höjer, Karl-Henrik Dreborg, Tomas Ekvall and Göran Finnveden. 2006. Scenario types and techniques: towards a user's guide. Futures, 38, 7, 723--739.
[6]
2012. Thematic analysis. APA Handbooks in Psychology. American Psychological Association, Washington, DC, US, 57--71. isbn: 978--1--43381-005--3.
[7]
Mayer Brezis, Sarah Israel, Avital Weinstein-Birenshtock, Pnina Pogoda, Ayelet Sharon and Renana Tauber. 2008. Quality of informed consent for invasive procedures. International Journal for Quality in Health Care, 20, 5, (July 2008), 352--357.
[8]
Tom Brinck and Louis M. Gomez. 1992. A collaborative medium for the support of conversational props. In Proceedings of the 1992 ACM Conference on Computer-Supported Cooperative Work (CSCW '92). Association for Computing Machinery, Toronto, Ontario, Canada, 171--178. isbn: 0897915429.
[9]
Alison Burrows, Rachael Gooberman-Hill and David Coyle. 2016. Shared language and the design of home healthcare technology. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). Association for Computing Machinery, San Jose, California, USA, 3584--3594. isbn: 9781450333627.
[10]
Carrie J. Cai, Samantha Winter, David Steiner, Lauren Wilcox and Michael Terry. 2019. "hello ai": uncovering the onboarding needs of medical practitioners for human-ai collaborative decision-making. Proc. ACM Hum.-Comput. Interact., 3, CSCW, Article 104, (Nov. 2019), 24 pages.
[11]
Nico Castelli, Aparecido Fabiano Pinatti de Carvalho, Nico Vitt, Sebastian Taugerbeck, Dave Randall, Peter Tolmie, Gunnar Stevens and Volker Wulf. 2022. On technology-assisted energy saving: challenges of digital plumbing in industrial settings. Human--Computer Interaction, 37, 4, 341--369.
[12]
Amy Cheng, Vaishnavi Raghavaraju, Jayanth Kanugo, Yohanes P. Handrianto and Yi Shang. 2018. Development and evaluation of a healthy coping voice interface application using the google home for elderly patients with type 2 diabetes. In 2018 15th IEEE Annual Consumer Communications Networking Conference (CCNC), 1--5.
[13]
Alan Cooper, Robert Reimann, David Cronin and Christopher Noessel. 2014. About Face: The Essentials of Interaction Design. (4th ed.). Wiley, (Sept. 2014), 720 pages. isbn: 978--1--118--76657--6.
[14]
Alan Cooper and Paul Saffo. 1999. The Inmates Are Running the Asylum. Macmillan Publishing Co., Inc., USA. isbn: 0672316498.
[15]
Rachel Eardley et al. 2022. A case study investigating a user-centred and expert informed 'companion guide' for a complex sensor-based platform. Proc. ACM Interact. Mob. Wearable Ubiquitous Technol., 6, 2, Article 93, (July 2022), 23 pages.
[16]
Atis Elsts, George Oikonomou, Xenofon Fafoutis and Robert Piechocki. 2017. Internet of things for smart homes: lessons learned from the sphere case study. In 2017 Global Internet of Things Summit (GIoTS), 1--6.
[17]
N. Epley, A. Waytz and J. T. Cacioppo. 2007. On seeing human: a three-factor theory of anthropomorphism. Psychological Review, 114, 4, 864--886.
[18]
Xenofon Fafoutis, Atis Elsts, Robert Piechocki and Ian Craddock. 2018. Experiences and lessons learned from making iot sensing platforms for large-scale deployments. IEEE Access, 6, 3140--3148.
[19]
Joel E. Fischer, Andy Crabtree, James A. Colley, Tom Rodden and Enrico Costanza. 2017. Data work: how energy advisors and clients make iot data accountable. Computer Supported Cooperative Work (CSCW), 26, 4, (Dec. 2017), 597--626.
[20]
Joel E. Fischer, Andy Crabtree, Tom Rodden, James A. Colley, Enrico Costanza, Michael O. Jewell and Sarvapali D. Ramchurn. 2016. "just whack it on until it gets hot": working with iot data in the home. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). Association for Computing Machinery, San Jose, California, USA, 5933--5944. isbn: 9781450333627.
[21]
B. J. Fogg. 2002. Persuasive technology: using computers to change what we think and do. Ubiquity, 2002, December, Article 5, (Dec. 2002), 32 pages.
[22]
Marzyeh Ghassemi, Luke Oakden-Rayner and Andrew L. Beam. 2021. The false hope of current approaches to explainable artificial intelligence in health care. The Lancet Digital Health, 3, 11, (Nov. 2021), e745--e750.
[23]
Leilani H. Gilpin, David Bau, Ben Z. Yuan, Ayesha Bajwa, Michael Specter and Lalana Kagal. 2018. Explaining explanations: an overview of interpretability of machine learning. In 2018 IEEE 5th International Conference on Data Science and Advanced Analytics (DSAA), 80--89.
[24]
Johanna Glaser, Sarah Nouri, Alicia Fernandez, Rebecca L. Sudore, Dean Schillinger, Michele Klein-Fedyshin and Yael Schenker. 2020. Interventions to improve patient comprehension in informed consent for medical and surgical procedures: an updated systematic review. Medical Decision Making, 40, 2, 119--143.
[25]
Rebecca E. Grinter, W. Keith Edwards, Mark W. Newman and Nicolas Ducheneaut. 2005. The work to make a home network work. In Proceedings of the Ninth Conference on European Conference on Computer Supported Cooperative Work (ECSCW'05). Springer-Verlag, Paris, France, 469--488. isbn: 9781402040221.
[26]
Abdelsalam Helal, Diane J. Cook and Mark Schmalz. 2009. Smart home-based health platform for behavioral monitoring and alteration of diabetes patients. Journal of Diabetes Science and Technology, 3, 1, 141--148.
[27]
S. Helal, W. Mann, H. El-Zabadani, J. King, Y. Kaddoura and E. Jansen. 2005. The gator tech smart house: a programmable pervasive space. Computer, 38, 3, 50--60.
[28]
Steven Houben, Connie Golsteijn, Sarah Gallacher, Rose Johnson, Saskia Bakker, Nicolai Marquardt, Licia Capra and Yvonne Rogers. 2016. Physikit: data engagement through physical ambient visualizations in the home. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). Association for Computing Machinery, San Jose, California, USA, 1608--1619. isbn: 9781450333627.
[29]
Amy S. Hwang, Khai N. Truong and Alex Mihailidis. 2012. Using participatory design to determine the needs of informal caregivers for smart home user interfaces. In 2012 6th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth) and Workshops, 41--48.
[30]
Naomi Jacobs. 2020. Two ethical concerns about the use of persuasive technology for vulnerable people. Bioethics, 34, 5, 519--526.
[31]
Timo Jakobi, Corinna Ogonowski, Nico Castelli, Gunnar Stevens and Volker Wulf. 2017. The catch(es) with smart home: experiences of a living lab field study. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17). Association for Computing Machinery, Denver, Colorado, USA, 1620--1633. isbn: 9781450346559.
[32]
Wolfgang Jentner, Rita Sevastjanova, Florian Stoffel, Daniel Keim, Jürgen Bernard and Mennatallah El-Assady. 2018. Minions, sheep, and fruits: metaphorical narratives to explain artificial intelligence and build trust. In Workshop on Visualization for AI Explainability (VISxAI). IEEE, Piscataway, NJ, (Oct. 2018), 7 pages.
[33]
Gerald J. Johnson. 1992. Talking about computers: from metaphor to jargon. AI & SOCIETY, 6, 3, (July 1992), 263--270.
[34]
Carolyn Johnston, Michael Baty and Comfort Adewole. 2015. King's college london student clinical ethics committee case discussion: a patient changes her mind about surgery -- should her later refusal be respected? Clinical Ethics, 10, 1--2, 34--36.
[35]
Brigitte Jordan and Austin Henderson. 1995. Interaction analysis: foundations and practice. Journal of the Learning Sciences, 4, 1, 39--103.
[36]
R. A. Kadam. 2017. Informed consent process: A step further towards making it meaningful! Perspect Clin Res, 8, 3, 107--112.
[37]
Mari-Rose Kennedy, Richard Huxtable, Giles Birchley, Jonathan Ives and Ian Craddock. 2021. ?a question of trust" and a leap of faith"-study participants' perspectives on consent, privacy, and trust in smart home research: qualitative study. JMIR Mhealth Uhealth, 9, 11, (Nov. 2021), e25227.
[38]
Elham Khodabandehloo, Daniele Riboni and Abbas Alimohammadi. 2021. Healthxai: collaborative and explainable ai for supporting early diagnosis of cognitive decline. Future Generation Computer Systems, 116, 168--189.
[39]
Emily R. Lai. 2011. Critical Thinking: A Literature Review Research Report. Research Report. Pearson, (June 2011). http://images.pearsonassessments.com/images/tmrs/criticalthinkingreviewfinal.pdf.
[40]
George Lakoff and Mark Johnson. 2008. Metaphors We Live By. University of Chicago Press, Chicago, IL, 256 pages. isbn: 9780226468013.
[41]
Josephine Lau, Benjamin Zimmerman and Florian Schaub. 2018. Alexa, are you listening? privacy perceptions, concerns and privacy-seeking behaviors with smart speakers. Proc. ACM Hum.-Comput. Interact., 2, CSCW, Article 102, (Nov. 2018), 31 pages.
[42]
Susan Lechelt, Yvonne Rogers and Nicolai Marquardt. 2020. Coming to your senses: promoting critical thinking about sensors through playful interaction in classrooms. In Proceedings of the Interaction Design and Children Conference (IDC '20). Association for Computing Machinery, London, United Kingdom, 11--22. isbn: 9781450379816.
[43]
Kevin Lefeuvre, Soeren Totzauer, Michael Storz, Albrecht Kurze, Andreas Bischof and Arne Berger. 2018. Bricks, blocks, boxes, cubes, and dice: on the role of cubic shapes for the design of tangible interactive devices. In Proceedings of the 2018 Designing Interactive Systems Conference (DIS '18). Association for Computing Machinery, Hong Kong, China, 485--496. isbn: 9781450351980.
[44]
Roxanne Leitão. 2019. Anticipating smart home security and privacy threats with survivors of intimate partner abuse. In Proceedings of the 2019 on Designing Interactive Systems Conference (DIS '19). Association for Computing Machinery, San Diego, CA, USA, 527--539. isbn: 9781450358507.
[45]
R. Lemaire. 2006. Informed consent -- a contemporary myth? The Journal of Bone and Joint Surgery. British volume, 88-B, 1, 2--7.
[46]
Tania Lombrozo. 2007. Simplicity and probability in causal explanation. Cognitive Psychology, 55, 3, 232--257.
[47]
Ewa Luger and Tom Rodden. 2013. An informed view on consent for ubicomp. In Proceedings of the 2013 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '13). Association for Computing Machinery, Zurich, Switzerland, 529--538. isbn: 9781450317702.
[48]
Travis Mayberry, Ellis Fenske, Dane Brown, Jeremy Martin, Christine Fossaceca, Erik C. Rye, Sam Teplov and Lucas Foppe. 2021. Who tracks the trackers? circumventing apple's anti-tracking alerts in the find my network. In Proceedings of the 20th Workshop on Workshop on Privacy in the Electronic Society (WPES '21). Association for Computing Machinery, Virtual Event, Republic of Korea, 181--186. isbn: 9781450385275.
[49]
Nora McDonald, Sarita Schoenebeck and Andrea Forte. 2019. Reliability and inter-rater reliability in qualitative research: norms and guidelines for cscw and hci practice. Proc. ACM Hum.-Comput. Interact., 3, CSCW, Article 72, (Nov. 2019), 23 pages.
[50]
Alex Mihailidis, Jennifer N. Boger, Tammy Craig and Jesse Hoey. 2008. The coach prompting system to assist older adults with dementia through handwashing: an efficacy study. BMC Geriatrics, 8, 1, (Nov. 2008), 28.
[51]
Tim Miller, Piers Howe and Liz Sonenberg. 2017. Explainable AI: beware of inmates running the asylum or: how I learnt to stop worrying and love the social and behavioural sciences. CoRR, abs/1712.00547, 7 pages. arXiv: 1712.00547.
[52]
Harry R. Moody. 1988. From Informed Consent to Negotiated Consent1. The Gerontologist, 28, Suppl, (June 1988), 64--70.
[53]
Clifford Nass, B.J. Fogg and Youngme Moon. 1996. Can computers be teammates? International Journal of Human-Computer Studies, 45, 6, 669--678.
[54]
Clifford Nass, Youngme Moon, B. J. Fogg, Byron Reeves and Chris Dryer. 1995. Can computer personalities be human personalities? In Conference Companion on Human Factors in Computing Systems (CHI '95). Association for Computing Machinery, Denver, Colorado, USA, 228--229. isbn: 0897917553.
[55]
NHS. 2020. About dementia. https://www.nhs.uk/conditions/dementia/about/.
[56]
NHS. 2019. Parkinson's disease. https://www.nhs.uk/conditions/parkinsons-disease/.
[57]
Aisling A. O'Kane, Helena M. Mentis and Eno Thereska. 2013. Non-static nature of patient consent: shifting privacy perspectives in health information sharing. In Proceedings of the 2013 Conference on Computer Supported Cooperative Work (CSCW '13). Association for Computing Machinery, San Antonio, Texas, USA, 553--562. isbn: 9781450313315.
[58]
Filipa Pajevic and Richard G. Shearmur. 2017. Catch me if you can: workplace mobility and big data. Journal of Urban Technology, 24, 3, 99--115.
[59]
Thomas Ploug and Søren Holm. 2020. The four dimensions of contestable ai diagnostics - a patient-centric approach to explainable ai. Artificial Intelligence in Medicine, 107, 101901.
[60]
[SW] QSR International Pty Ltd., NVivo 2020. url: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home.
[61]
Yvonne Rogers and Henk Muller. 2006. A framework for designing sensor-based interactions to promote exploration and reflection in play. International Journal of Human-Computer Studies, 64, 1, 1--14.
[62]
Yael Schenker, Alicia Fernandez, Rebecca Sudore and Dean Schillinger. 2011. Interventions to improve patient comprehension in informed consent for medical and surgical procedures: a systematic review. Medical Decision Making, 31, 1, 151--173.
[63]
[SW] SimpleApps, SimpleMind 2020. url: https://simplemind.eu/.
[64]
Ewan Soubutts, Amid Ayobi, Rachel Eardley, Kirsten Cater and Aisling Ann O'Kane. 2021. Aging in place together: the journey towards adoption and acceptance of stairlifts in multi-resident homes. Proc. ACM Hum.-Comput. Interact., 5, CSCW2, Article 320, (Oct. 2021), 26 pages.
[65]
Peter Tolmie and Andy Crabtree. 2008. Deploying research technology in the home. In Proceedings of the 2008 ACM Conference on Computer Supported Cooperative Work (CSCW '08). Association for Computing Machinery, San Diego, CA, USA, 639--648. isbn: 9781605580074.
[66]
Peter Tolmie, Andy Crabtree, Stefan Egglestone, Jan Humble, Chris Greenhalgh and Tom Rodden. 2010. Digital plumbing: the mundane work of deploying ubicomp in the home. Personal and Ubiquitous Computing, 14, 3, (Apr. 2010), 181--196.
[67]
Peter Tolmie, Andy Crabtree, Tom Rodden, James Colley and Ewa Luger. 2016. this has to be the cats": personal data legibility in networked sensing systems. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16). Association for Computing Machinery, San Francisco, California, USA, 491--502. isbn: 9781450335928.
[68]
Philip W. F. van Notten, Jan Rotmans, Marjolein B. A. van Asselt and Dale S. Rothman. 2003. An updated scenario typology. Futures, 35, 5, 423--443.
[69]
Jennifer Watermeyer and Claire Penn. 2009. come let me show you": the use of props to facilitate understanding of antiretroviral dosage instructions in multilingual pharmacy interactions. In Health Communication in Southern Africa: Engaging With Social and Cultural Diversity. L. Lagerwerf, H. Boer and H. Wasserman, editors. Rozenberg, Amsterdam, NL, (Jan. 2009), 191--216.
[70]
Przemyslaw Woznowski et al. 2017. Sphere: a sensor platform for healthcare in a residential environment. In Designing, Developing, and Facilitating Smart Cities: Urban Design to IoT Solutions. Vangelis Angelakis, Elias Tragos, Henrich C. Pöhls, Adam Kapovits and Alessandro Bassi, editors. Springer International Publishing, Cham, 315--333. isbn: 978--3--319--44924--1.
[71]
Eric Zeng and Franziska Roesner. 2019. Understanding and improving security and privacy in multi-user smart homes: a design exploration and in-home user study. In Proceedings of the 28th USENIX Conference on Security Symposium (SEC'19). USENIX Association, Santa Clara, CA, USA, 159--176. isbn: 9781939133069.
[72]
Ni Zhu et al. 2015. Bridging e-health and the internet of things: the sphere project. IEEE Intelligent Systems, 30, 4, 39--46.
[73]
Gottfried Zimmermann, Tobias Ableitner and Christophe Strobbe. 2017. User needs and wishes in smart homes: what can artificial intelligence contribute? In 2017 14th International Symposium on Pervasive Systems, Algorithms and Networks 2017 11th International Conference on Frontier of Computer Science and Technology 2017 Third International Symposium of Creative Computing (ISPAN-FCST-ISCC), 449--453.

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  1. Explanation before Adoption: Supporting Informed Consent for Complex Machine Learning and IoT Health Platforms

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    cover image Proceedings of the ACM on Human-Computer Interaction
    Proceedings of the ACM on Human-Computer Interaction  Volume 7, Issue CSCW1
    CSCW
    April 2023
    3836 pages
    EISSN:2573-0142
    DOI:10.1145/3593053
    Issue’s Table of Contents
    This work is licensed under a Creative Commons Attribution International 4.0 License.

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    Published: 16 April 2023
    Published in PACMHCI Volume 7, Issue CSCW1

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    1. consent
    2. explainable
    3. health
    4. privacy
    5. qualitative
    6. smart homes
    7. user study

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