Using Participatory Design to Inform the Connected and Open Research Ethics (CORE) Commons
Mobile health (mHealth) research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE (Connected and Open Research Ethics) platform now features a community forum, a resource library and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter.
KeywordsParticipatory design Research ethics mHealth Pervasive technology Digital medicine IRB
This research was supported by the Robert Wood Johnson Foundation (Title: Connected and Open Research Ethics (CORE), Principal Investigator: Nebeker, #72876, 2015-2017) and the UC San Diego Chancellor’s Interdisciplinary Collaboratory (Co-PIs: Nebeker, Weibel and Bloss). We thank the IRB community (members, analysts) and researchers who participated in interviews and working groups to guide the design of the CORE platform features. Human subjects protection statement: The research study was certified as Exempt (45 CFR 46.101) by the UC San Diego Human Research Protections Program.
- Dunseath, S., Weibel, N., Bloss, C. S., & Nebeker, C. (2018). NIH support of mobile, imaging, pervasive sensing, social media and location tracking (MISST) research: Laying the foundation to examine research ethics in the digital age. npj Digital Medicine, 1(1), 20171. https://doi.org/10.1038/s41746-017-0001-5.CrossRefGoogle Scholar
- Hashemi, J., Tepper, M., Vallin Spina, T., Esler, A., Morellas, V., Papanikolopoulos, N., et al. (2014). Computer vision tools for low-cost and noninvasive measurement of autism-related behaviors in infants. Autism Research and Treatment, 2014, 1–12. https://doi.org/10.1155/2014/935686.CrossRefGoogle Scholar
- Hodges, S., Williams, L., Berry, E., Izadi, S., Srinivasan, J., Butler, A., & et al. (2006). SenseCam: A retrospective memory aid. In Proceedings of Ubicomp 2006 (pp. 177–193). https://doi.org/10.1007/11853565_11.
- Kelly, P., Marshall, S. J., Badland, H., Kerr, J., Oliver, M., Doherty, A. R., et al. (2013). An ethical framework for automated, wearable cameras in health behavior research. American Journal of Preventive Medicine, 44(3), 314–319. https://doi.org/10.1016/j.amepre.2012.11.006.CrossRefGoogle Scholar
- Kerr, J., Marshall, S. J., Godbole, S., Chen, J., Legge, A., Doherty, A. R., et al. (2013). Using the SenseCam to improve classifications of sedentary behavior in free-living settings. American Journal of Preventive Medicine, 44(3), 290–296. https://doi.org/10.1016/j.amepre.2012.11.004.CrossRefGoogle Scholar
- Lave, J. (1991). Situating learning in communities of practice. In Perspectives on socially shared cognition. (Vol. 2, pp. 63–82). Washington: American Psychological Association. https://doi.org/10.1037/10096-003.
- Mariakakis, A., & Patel, S. (2016). Ocular symptom detection using smartphones. In Proceedings of the 2016 ACM international joint conference on pervasive and ubiquitous computing: Adjunct (pp. 435–440). New York, NY, USA: ACM. https://doi.org/10.1145/2968219.2971354.
- Marinac, C., Merchant, G., Godbole, S., Chen, J., Kerr, J., Clark, B., & et al. (2013). The feasibility of using SenseCams to measure the type and context of daily sedentary behaviors. In ACM international conference proceeding series, pp. 42–49. https://doi.org/10.1145/2526667.2526674.
- Martin, R. C. (2003). Agile software development: Principles, patterns, and practices. Upper Saddle River, NJ: Prentice Hall PTR.Google Scholar
- McKinley, D. C., Miller-Rushing, A. J., Ballard, H. L., Bonney, R., Brown, H., Cook-Patton, S. C., et al. (2017). Citizen science can improve conservation science, natural resource management, and environmental protection. Biological Conservation, 208, 15–28. https://doi.org/10.1016/j.biocon.2016.05.015.CrossRefGoogle Scholar
- Murnane, E. L., & Counts, S. (2014). Unraveling abstinence and relapse: Smoking cessation reflected in social media. In Proceedings of the SIGCHI conference on human factors in computing systems (pp. 1345–1354). New York, NY: ACM. https://doi.org/10.1145/2556288.2557145.
- Nebeker, C. (2017). Getting to the CORE of MISST-related research. Amp&rsand: The PRIM&R blog. https://blog.primr.org/core-misst-research/. Accessed January 16, 2019.
- Nebeker, C., Harlow, J., Espinoza Giacinto, R., Orozco-Linares, R., Bloss, C. S., & Weibel, N. (2017a). Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives. AJOB Empirical Bioethics, 8(4), 266–276. https://doi.org/10.1080/23294515.2017.1403980.CrossRefGoogle Scholar
- Nebeker, C., Lagare, T., Takemoto, M., Lewars, B., Crist, K., Bloss, C. S., et al. (2016). Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research. Translational Behavioral Medicine, 6(4), 577–586. https://doi.org/10.1007/s13142-016-0426-4.CrossRefGoogle Scholar
- Nebeker, C., Murray, K., Holub, C., Haughton, J., & Arredondo, E. M. (2017b). Acceptance of mobile health in communities underrepresented in biomedical research: Barriers and ethical considerations for scientists. JMIR mHealth and uHealth, 5(6), e87. https://doi.org/10.2196/mhealth.6494.CrossRefGoogle Scholar
- Nebeker, C., Orozco-Linares, R., & Crist, K. (2015). A multi-case study of research using mobile imaging, sensing and tracking technologies to objectively measure behavior: Ethical issues and insights to guide responsible research practice. Journal of Research Administration, 46(1), 118–134.Google Scholar
- Ramesh, V., Rick, S., Agrawal, K., Meyers, B., Cauwenberghs, G., & Weibel, N. (2016). A neurobehavioral evaluation system using 3d depth tracking and computer vision: The case of stroke-kinect. In Society for Neuroscience, Posters.Google Scholar
- Schuler, D., & Namioka, A. (1993). Participatory design: Principles and practices. Hillsdale, NJ: Lawrence Erlbaum Associates Inc.Google Scholar
- Thangarajan, N., Green, N., Gupta, A., Little, S., & Weibel, N. (2015). Analyzing social media to characterize local HIV at-risk populations. In Proceedings of the conference on Wireless Health—WH’15 (pp. 1–8). New York, NY: ACM. https://doi.org/10.1145/2811780.2811923.
- Triantafyllidis, A. K., Velardo, C., Salvi, D., Shah, S. A., Koutkias, V. G., & Tarassenko, L. (2017). A survey of mobile phone sensing, self-reporting, and social sharing for pervasive healthcare. IEEE Journal of Biomedical and Health Informatics, 21(1), 218–227. https://doi.org/10.1109/JBHI.2015.2483902.CrossRefGoogle Scholar
- Vitak, J., Shilton, K., & Ashktorab, Z. (2016). Beyond the Belmont Principles: Ethical challenges, practices, and beliefs in the online data research community. In Proceedings of the 19th ACM conference on computer-supported cooperative work and social computing—CSCW’16 (pp. 939–951). New York, NY: ACM Press. https://doi.org/10.1145/2818048.2820078.
- Wang, R., Chen, F., Chen, Z., Li, T., Harari, G., Tignor, S., & et al. (2014). StudentLife: Assessing mental health, academic performance and behavioral trends of college students using smartphones. In Ubicomp’14, 3–14. https://doi.org/10.1145/2632048.2632054.
- Wenger, E. (2001). Communities of practice: Learning, meaning, and identity. New York, NY: Cambridge University Press.Google Scholar
- Wenger-Trayner, E., & Wenger-Trayner, B. (2015). Communities of practice: A brief introduction. http://wenger-trayner.com/wp-content/uploads/2015/04/07-Brief-introduction-to-communities-of-practice.pdf. Accessed January 18, 2019.