Explanation before Adoption: Supporting Informed Consent for Complex Machine Learning and IoT Health Platforms
Rachel Eardley, Emma Tonkin, Ewan Soubutts, Amid Ayobi, Gregory Tourte, Rachael Gooberman-Hill, Ian Craddock & Aisling O'Kane. 2023.
Proc. ACM Hum.-Comput. Interact.
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.
Citation
Eardley, R., Tonkin, E. L., Soubutts, E., Ayobi, A., Tourte, G. J. L., Gooberman-Hill, R., … O'Kane, A. A. (2023 , apr). Explanation before adoption: supporting informed consent for complex machine learning and iot health platforms. Proc. ACM Hum.-Comput. Interact., 7(CSCW1). URL: https://doi.org/10.1145/3579482, doi:10.1145/3579482
BibTeX
@article{10.1145/3579482, author = {Eardley, Rachel and Tonkin, Emma L. and Soubutts, Ewan and Ayobi, Amid and Tourte, Gregory J. L. and Gooberman-Hill, Rachael and Craddock, Ian and O'Kane, Aisling Ann}, title = {Explanation before Adoption: Supporting Informed Consent for Complex Machine Learning and IoT Health Platforms}, year = {2023}, issue_date = {April 2023}, publisher = {Association for Computing Machinery}, address = {New York, NY, USA}, volume = {7}, number = {CSCW1}, url = {https://doi.org/10.1145/3579482}, doi = {10.1145/3579482}, 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.}, journal = {Proc. ACM Hum.-Comput. Interact.}, month = {apr}, articleno = {49}, numpages = {25}, keywords = {consent, explainable, health, privacy, qualitative, smart homes, user study} }