References
- 1Alwan, NA. 2021. The road to addressing Long Covid. Science. DOI: 10.1126/science.abg7113
- 2Asarani, NAM, Reynolds, AN, Elbalshy, M, Burnside, M, de Bock, M, Lewis, DM and Wheeler, BJ. 2021. Efficacy, safety, and user experience of DIY or open-source artificial pancreas systems: a systematic review. Acta Diabetologica. DOI: 10.1007/s00592-020-01623-4
- 3Bammer, G. 2016. What constitutes appropriate peer review for interdisciplinary research? Palgrave Communications. DOI: 10.1057/palcomms.2016.17
- 4Baum, F, MacDougall, C and Smith, D. 2006. Participatory action research. Journal of Epidemiology and Community Health, 60(10). DOI: 10.1136/jech.2004.028662
- 5Burnside, MJ, Lewis, DM, Crocket, H, Meier, R, Williman, J, Sanders, OJ, Jefferies, CA, Faherty, AM, Paul, R, Lever, CS and Wheeler, BJ. 2022. 286-OR: The CREATE Trial: Randomized clinical trial comparing open-source automated insulin delivery with sensor augmented pump therapy in type 1 diabetes. Diabetes. DOI: 10.2337/db22-286-OR
- 6Citizen Science: Theory and Practice. no date. “Submissions Guidelines.” Available at:
https://theoryandpractice.citizenscienceassociation.org/about/submissions/ (Accessed: April 6, 2022). - 7Cooper, CB, Hawn, CL, Larson, LR, Parrish, JK, Bowser, G, Cavalier, D, Dunn, RR, Haklay, M, Gupta, KK, Jelks, NT and Johnson, VA. 2021. Inclusion in citizen science: The conundrum of rebranding. Science. DOI: 10.1126/science.abi6487
- 8Crouch, LA, Viduto, V and Zangari, M. 2022. “Is long COVID taken seriously by primary care physicians? Evidence through citizen science.” Center for Open Science [Preprint]. DOI: 10.31235/osf.io/5sx79
- 9Eitzel, MV, Cappadonna, JL, Santos-Lang, C, Duerr, RE, Virapongse, A, West, SE, Kyba, CC, Bowser, A, Cooper, CB, Sforzi, A and Metcalfe, AN. 2017. Citizen science terminology matters: Exploring key terms. Citizen Science: Theory and Practice, 2(1). DOI: 10.5334/cstp.96
- 10Elliott, KC and Rosenberg, J. 2019. Philosophical foundations for citizen science, Citizen Science: Theory and Practice, 4(1). DOI: 10.5334/cstp.155
- 11Fiske, A, Savio, LD, Prainsack, B and Buyx, A. 2019. Conceptual and ethical considerations for citizen science in biomedicine. In Personal Health Science. DOI: 10.1007/978-3-658-16428-7_10
- 12Frost, J and Massagli, M. 2009. PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health. Chronic Respiratory Disease. DOI: 10.1177/1479972309348655
- 13Gadermaier, G, Dörler, D, Heigl, F, Mayr, S, Rüdisser, J, Brodschneider, R and Marizzi, C. 2018. Peer-reviewed publishing of results from citizen science projects. Journal of Science Communication. DOI: 10.22323/2.17030101
- 14Ganzevoort, W, van den Born, RJ, Halffman, W and Turnhout, S. 2017. Sharing biodiversity data: citizen scientists’ concerns and motivations. Biodiversity and Conservation, 26(12). DOI: 10.1007/s10531-017-1391-z
- 15Grant, AD, Lewis, DM and Kriegsfeld, LJ. 2021. Multi-timescale rhythmicity of blood glucose and insulin delivery reveals key advantages of hybrid closed loop therapy. Journal of Diabetes Science and Technology [Preprint]. DOI: 10.1177/1932296821994825
- 16Greshake Tzovaras, B, Angrist, M, Arvai, K, Dulaney, M, Estrada-Galiñanes, V, Gunderson, B, Head, T, Lewis, D, Nov, O, Shaer, O and Tzovara, A. 2019. Open humans: A platform for participant-centered research and personal data exploration. GigaScience. DOI: 10.1093/gigascience/giz076
- 17De la Loge, C, Dimova, S, Mueller, K, Phillips, G, Durgin, TL, Wicks, P and Borghs, S. 2016. PatientsLikeMe® Online Epilepsy Community: Patient characteristics and predictors of poor health-related quality of life. Epilepsy and Behavior, 63. DOI: 10.1016/j.yebeh.2016.07.035
- 18Lewis, D. 2019. “History and perspective on DIY closed looping.” Journal of Diabetes Science and Technology. DOI: 10.1177/1932296818808307
- 19Lewis, D. 2021. “How it started, how it is going: The future of artificial pancreas systems (automated insulin delivery systems).” Journal of Diabetes Science and Technology, 15(6). DOI: 10.1177/19322968211027558
- 20Lewis, D and Leibrand, S. 2016. Real-world use of open source artificial pancreas systems. Journal of Diabetes Science and Technology. DOI: 10.1177/1932296816665635
- 21Lewis, DM, Leibrand, S, Street, TJ and Phatak, SS. 2018. “Detecting insulin sensitivity changes for individuals with type 1 diabetes.” Diabetes, 67(Supplement_1). DOI: 10.2337/db18-79-LB
- 22Lewis, DM, Swain, RS and Donner, TW. 2018. Improvements in A1C and Time-in-Range in DIY Closed-Loop (OpenAPS) Users. Diabetes, 67(Supplement_1). DOI: 10.2337/db18-352-OR
- 23“Long COVID: let patients help define long-lasting COVID symptoms”. 2020. Nature. DOI: 10.1038/d41586-020-02796-2
- 24Mosquera-Lopez, C, Dodier, R, Tyler, N, Resalat, N and Jacobs, P. 2019. Leveraging a Big Dataset to Develop a Recurrent Neural Network to Predict Adverse Glycemic Events in Type 1 Diabetes. IEEE Journal of Biomedical and Health Informatics [Preprint]. DOI: 10.1109/JBHI.2019.2911701
- 25Ottinger, G. 2010. Buckets of resistance: Standards and the effectiveness of citizen science. Science Technology and Human Values, 35(2). DOI: 10.1177/0162243909337121
- 26Papadopoulos, A, Salinas, J and Crump, C. 2021. Computational modeling approaches to characterize risk and achieve safe, effective, and trusted designs in the development of artificial intelligence and autonomous closed-loop medical systems. Proc. SPIE 11746, Artificial Intelligence and Machine Learning for Multi-Domain Operations Applications III, 1174623. DOI: 10.1117/12.2586101
- 27PatientsLikeMe Research Manuscripts Bibliography. 2019. Available at:
https://www.patientslikeme.com/research/publications (Accessed: April 6, 2022). - 28Paul Wicks. no date. Available at:
https://www.bmj.com/about-bmj/advisory-panels/patient-panel-members/paul-wicks (Accessed: April 7, 2022). - 29Pricing Costs for NVivo. no date. Available at:
https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/buy-now (Accessed: April 7, 2022). - 30Rampin, R and Rampin, V. 2021. Taguette: open-source qualitative data analysis. Journal of Open Source Software, 6(68): 3522. DOI: 10.21105/joss.03522
- 31Readiness Quiz. (no date). Available at:
https://partner.openingpathways.org/quiz (Accessed: April 11, 2022). - 32Reinius, M, Mazzocato, P, Riggare, S, Bylund, A, Jansson, H, Øvretveit, J, Savage, C, Wannheden, C and Hasson, H. 2022. Patient-driven innovations reported in peer-reviewed journals: a scoping review. BMJ Open, 12. DOI: 10.1136/bmjopen-2021-053735
- 33Riggare, S. 2020. Patient researchers — the missing link? Nature Medicine. DOI: 10.1038/s41591-020-1080-4
- 34Rivard, L, Lehoux, P and Alami, H. 2021. It’s not just hacking for the sake of it: A qualitative study of health innovators’ views on patient-driven open innovations, quality and safety. BMJ Quality and Safety, 30(9). DOI: 10.1136/bmjqs-2020-011254
- 35Rodríguez-Rodríguez, I, Chatzigiannakis, I, Rodríguez, JV, Maranghi, M, Gentili, M and Zamora-Izquierdo, MÁ. 2019. Utility of big data in predicting short-term blood glucose levels in type 1 diabetes mellitus through machine learning techniques. Sensors (Switzerland), 19(20). DOI: 10.3390/s19204482
- 36Tzovaras, BG, Hidalgo, ES, Alexiou, K, Baldy, L, Morane, B, Bussod, I, Fribourg, M, Wac, K, Wolf, G and Ball, M. 2021. Using an individual-centered approach to gain insights from wearable data in the quantified flu platform: Netnography study. Journal of Medical Internet Research, 23(9). DOI: 10.2196/28116
- 37Wicks, P. 2018. Patient, study thyself. BMC Medicine. DOI: 10.1186/s12916-018-1216-2
- 38Wicks, P and Little, M. 2013. The virtuous circle of the quantifi ed self: A human computational approach to improved health outcomes. In: Handbook of Human Computation. DOI: 10.1007/978-1-4614-8806-4_12
- 39Wicks, P, Massagli, M, Frost, J, Brownstein, C, Okun, S, Vaughan, T, Bradley, R and Heywood, J. 2010. Sharing health data for better outcomes on patientslikeme. Journal of Medical Internet Research. 12(2). DOI: 10.2196/jmir.1549
- 40Wicks, P, Sulham, KA and Gnanasakthy, A. 2014. Quality of life in organ transplant recipients participating in an online transplant community. Patient, 7(1). DOI: 10.1007/s40271-013-0033-0
- 41Wilkins, RB. 2021. Do You Know Me?: The Subtle Distinction Between “Anonymous” and “De-identified” Data in Clinical Research. Available at:
https://www.wcgirb.com/insights/do-you-know-me-the-subtle-distinction-between-anonymous-and-de-identified-data-in-clinical-research/ (Accessed: April 7, 2022).
