Jessica A Pater
Amanda Coupe
Shion Guha
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Abstract
The COVID-19 pandemic transformed many aspects of health and daily life. A subset of people who were infected with the virus have ongoing chronic health issues that range in type of symptom and severity. In this study, we conducted a qualitative assessment of self-reported post-COVID symptoms from patients' electronic health records (EHR, n=564) and a randomized collection of Reddit and Twitter posts (n=500 for each). We show the inconsistencies in what types of symptoms are shared between platforms in addition to assessing the severity of the symptoms and how social media characterizations of post-COVID do not tell a complete story of this phenomenon. This research contributes to CSCW health literature by connecting digital traces of post-COVID with EHR data, critiquing the use of social media as a health proxy and points to its potential to add context to the analysis of traditional health data extracted from the EHR.
- Anna Lavis adn Rachel Winter. 2020. Online harms or benefits? An ethnographic analysis of the positives and negatives of peer-support around self-harm on social media. Journal of child psychology and psychiatry 61, 8 (2020), 842--854.Google Scholar
Cross Ref
- AHA. 2022. Fast Facts on U.S. Hospitals, 2022. American Hospital Association (Feb 2022). https://www.aha.org/statistics/fast-facts-us-hospitalsGoogle Scholar
- Syeda Zainab Akbar, Anmol Panda, Divyanshu Kukreti, Azhagu Meena, and Joyojeet Pal. 2021. Misinformation as a Window into Prejudice: COVID-19 and the Information Environment in India. Proc. ACM Hum.-Comput. Interact. 4, CSCW3, Article 249 (jan 2021), 28 pages. https://doi.org/10.1145/3432948Google ScholarDigital Library
- Kimberley R. Allison, Pandora Patterson, Daniel Guilbert, Melissa Noke, and Olga Husson. 2021. Logging On, Reaching Out, and Getting By: A Review of Self-Reported Psychosocial Impacts of Online Peer Support for People Impacted by Cancer. Proc. ACM Hum.-Comput. Interact. 5, CSCW1, Article 95 (apr 2021), 35 pages. https://doi.org/10.1145/3449169Google ScholarDigital Library
- Tawfiq Ammari and Sarita Schoenebeck. 2015. Networked Empowerment on Facebook Groups for Parents of Children with Special Needs. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (Seoul, Republic of Korea) (CHI '15). Association for Computing Machinery, New York, NY, USA, 2805--2814. https://doi.org/10.1145/2702123.2702324Google ScholarDigital Library
- Nazanin Andalibi. 2019. What Happens After Disclosing Stigmatized Experiences on Identified Social Media: Individual, Dyadic, and Social/Network Outcomes. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (Glasgow, Scotland Uk) (CHI '19). Association for Computing Machinery, New York, NY, USA, 1--15. https://doi.org/10.1145/3290605.3300367Google ScholarDigital Library
- Nazanin Andalibi and Patricia Garcia. 2021. Sensemaking and Coping After Pregnancy Loss: The Seeking and Disruption of Emotional Validation Online. Proc. ACM Hum.-Comput. Interact. 5, CSCW1, Article 127 (apr 2021), 32 pages. https://doi.org/10.1145/3449201Google ScholarDigital Library
- Nazanin Andalibi, Oliver L. Haimson, Munmun De Choudhury, and Andrea Forte. 2016. Understanding Social Media Disclosures of Sexual Abuse Through the Lenses of Support Seeking and Anonymity. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA) (CHI '16). Association for Computing Machinery, New York, NY, USA, 3906--3918. https://doi.org/10.1145/2858036.2858096Google ScholarDigital Library
- Anietie U. Andy, Sarath C. Guntuku, Srinath Adusumalli, David A. Ashch, Peter W. Groeneveld, Lyle H. Ungar, and Raina M. Merchant. 2021. Predicting cardiovascular risk using social media data: performance evaluation of machine-learning models. JMIR cardio 5, 1 (2021), e24473. https://doi.org/10.2196/24473Google ScholarCross Ref
- Cecilia Aragon, Shion Guha, Marina Kogan, Michael Muller, and Gina Neff. 2022. Human-Centered Data Science: An Introduction. MIT Press.Google Scholar
- Hamilton F.W. Milne A. Morley A.J. Viner J. Attwood M.-Noel A. Gunning S. Hatrick-J. Hamilton S. Arnold, D.T. and K.T. Elvers. 2021. Patient outcomes after hospitalisation with COVID-19 and implications for follow-up: results from a prospective UK cohort. Thorax 76, 4 (2021), 399--401. https://doi.org/10.1136/thoraxjnl-2020--216086Google ScholarCross Ref
- Danny Azucar, Davide Marengo, and Michele Settanni. 2018. Predicting the Big 5 personality traits from digital footprints on social media: A meta-analysis. Personality and individual differences 124 (2018), 150--159. https://doi.org/10.1016/j.paid.2017.12.018Google ScholarCross Ref
- Nelson S. Baker, M. and J. Krsnak. 2021. Case management on the front lines of COVID-19: The importance of the individualized care plan across care settings. Professional Case Management 26, 2 (2021), 62--69. https://doi.org/10.1097/NCM.0000000000000484Google ScholarCross Ref
- Gurdas Viguruji Singh Osaid H. Alser Banda, Juan M. and Daniel Prieto-Alhambra. 2020. Long-term patient-reported symptoms of COVID-19: an analysis of social media data. medRxiv Preprint (2020).Google Scholar
- Sara Berg. 2022. What doctors wish patients knew about long COVID. American Medical Association (AMA) Public Health (March 2022). https://www.ama-assn.org/delivering-care/public-health/what-doctors-wish-patients-knew-about-long-covidGoogle Scholar
- Karthik S Bhat, Mohit Jain, and Neha Kumar. 2021. Infrastructuring Telehealth in (In)Formal Patient-Doctor Contexts. Proc. ACM Hum.-Comput. Interact. 5, CSCW2, Article 323 (oct 2021), 28 pages. https://doi.org/10.1145/3476064Google ScholarDigital Library
- Laura Biester, Katie Matton, Janarthanan Rajendran, Emily Mower Provost, and Rada Mihalcea. 2021. Understanding the Impact of COVID-19 on Online Mental Health Forums. ACM Trans. Manage. Inf. Syst. 12, 4, Article 31 (sep 2021), 28 pages. https://doi.org/10.1145/3458770Google ScholarDigital Library
- Johnna Blair and Saeed Abdullah. 2018. Supporting Constructive Mental Health Discourse in Social Media. In Proceedings of the 12th EAI International Conference on Pervasive Computing Technologies for Healthcare (New York, NY, USA) (PervasiveHealth '18). Association for Computing Machinery, New York, NY, USA, 299--303. https://doi.org/10.1145/3240925.3240930Google ScholarDigital Library
- Matt Bonner and Elizabeth D. Mynatt. 2014. Gauging the Patient-Centered Potential of Online Health Seeking. In Proceedings of the 8th International Conference on Pervasive Computing Technologies for Healthcare (Oldenburg, Germany) (PervasiveHealth '14). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), Brussels, BEL, 33--40. https://doi.org/10.4108/icst.pervasivehealth.2014.254953Google ScholarDigital Library
- James Briggs. 2021. How to use the reddit API in Python. https://towardsdatascience.com/how-to-use-the-reddit-api-in-python-5e05ddfd1e5cGoogle Scholar
- Lauren Britton, Louise Barkhuus, and Bryan Semaan. 2019. "Mothers as Candy Wrappers": Critical Infrastructure Supporting the Transition into Motherhood. Proc. ACM Hum.-Comput. Interact. 3, GROUP, Article 232 (dec 2019), 21 pages. https://doi.org/10.1145/3361113Google ScholarDigital Library
- Felicity Callard and Elisa Perego. 2021. How and why patients made Long Covid. Social Science & Medicine 268 (2021), 113426. https://doi.org/10.1016/j.socscimed.2020.113426Google ScholarCross Ref
- Erica Carbajal and Cailey Gleeson. 2022. 66 hospitals, health systems that have launched post-COVID-19 clinics. Becker Hospital Review (Feb 2022). https://www.beckershospitalreview.com/patient-safety-outcomes/13-hospitals-health-systems-that-have-launched-post-covid-19-clinics.htmlGoogle Scholar
- Angelo Carfi and Roberto Bernabei adn Francesco Landi. 2020. Persistent symptoms in patients after acute COVID-19. JAMA 324, 6 (2020), 603--605. https://doi.org/10.1001/jama.2020.12603Google ScholarCross Ref
- CDC. 2022. Long Covid or post-covid conditions. (2022). https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.htmlGoogle Scholar
- Ariana Eunjung Cha. 2022. She went to one doctor, then another and another. The Washington Post Health (April 2022). https://www.washingtonpost.com/health/2022/04/18/long-covid-medical-care-challenge/Google Scholar
- Stevie Chancellor, Eric P. S. Baumer, and Munmun De Choudhury. 2019. Who is the "Human" in Human-Centered Machine Learning: The Case of Predicting Mental Health from Social Media. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 147 (nov 2019), 32 pages. https://doi.org/10.1145/3359249Google ScholarDigital Library
- Stevie Chancellor, Zhiyuan Lin, Erica L. Goodman, Stephanie Zerwas, and Munmun De Choudhury. 2016. Quantifying and Predicting Mental Illness Severity in Online Pro-Eating Disorder Communities. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (San Francisco, California, USA) (CSCW '16). Association for Computing Machinery, New York, NY, USA, 1171--1184. https://doi.org/10.1145/2818048.2819973Google ScholarDigital Library
- Stevie Chancellor, Jessica Annette Pater, Trustin Clear, Eric Gilbert, and Munmun De Choudhury. 2016. thyghgapp: Instagram Content Moderation and Lexical Variation in Pro-Eating Disorder Communities. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (San Francisco, California, USA) (CSCW '16). Association for Computing Machinery, New York, NY, USA, 1201--1213. https://doi.org/10.1145/2818048.2819963Google ScholarDigital Library
- Stevie Chancellor, Jessica Annette Pater, Trustin Clear, Eric Gilbert, and Munmun De Choudhury. 2016. thyghgapp: Instagram Content Moderation and Lexical Variation in Pro-Eating Disorder Communities. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (San Francisco, California, USA) (CSCW '16). Association for Computing Machinery, New York, NY, USA, 1201--1213. https://doi.org/10.1145/2818048.2819963Google ScholarDigital Library
- Anjum F. Chippa V, Aleem A. 2022. Post Acute Coronavirus (COVID-19) Syndrome. https://www.ncbi.nlm.nih.gov/books/NBK570608/Google Scholar
- Munmun De Choudhury, Michael Gamon, Scott Counts, and Eric Horvitz. 2013. Predicting depression via social media. In Seventh international AAAI conference on weblogs and social media (2013).Google Scholar
- K. Y. Chuang and C. C. Yang. 2010. Helping you to help me: exploring supportive interaction in online health community. Proceedings of the American Society for Information Science and Technology 47, 1 (2010), 1--10.Google ScholarCross Ref
- Elizabeth T. Cirulli, Kelly M. Schiabor Barrett, Stephen Riffle, Alexandre Bolze, Iva Neveux, Shaun Dabe, Joseph J. Grzymski, James T. Lu, and Nicole L. Washington. 2020. Long-term COVID-19 symptoms in a large unselected population. (2020). https://doi.org/10.1101/2020.10.07.20208702Google ScholarCross Ref
- Glen Coppersmith, Mark Dredze, and Craig Harman. 2014. Quantifying mental health signals in twitter. In ACL Workshop on Computational Linguistics and Clinical Psychology (2014).Google ScholarCross Ref
- Angela Coulter. 2012. Patient engagement-what works? The Journal of ambulatory care management 35, 2 (2012), 80--89.Google ScholarCross Ref
- Nowell J Young M Edison P Crook H, Raza S. 2021. Long covid-mechanisms, risk factors, and management. BMJ 374 (2021), N1648. https://doi.org/10.1136/bmj.n1648Google ScholarCross Ref
- A. Daher, P. Balfanz adn C. Cornelissen, A. Muller, I. Bergs, N. Marx, D. Muller-Wieland, B. Hartman, M. Dreher, and T. Muller. 2020. Follow up of patients with severe cornoavirus disease 2019 (COVID-19): Pulmonary and extrapulmonary disease sequlae. Respiratory medicine 174 (2020), 106197. https://doi.org/10.1016/j.rmed.2020.106197Google ScholarCross Ref
- Hannah E. Davis, Gina S. Assaf, Lisa McCorkell, Hannah Wei, Ryan J. Low, Yochai Re'em, Signe Redfield, Jared P. Austin, , and Athena Akrami. 2021. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine 38 (2021), 101019.Google ScholarCross Ref
- Waller M.D. Perrin F. Periselneris J. Norton S. Smith L.J.-Patrick T. Walder D. Heitmann-A. Lee K. D'Cruz, R.F. and R. Madula. 2021. Chest radiography is a poor predictor of respiratory symptoms and functional impairment in survivors of severe COVID-19 pneumonia. ERJ Open Research 7, 1 (2021).Google Scholar
- Munmun De Choudhury, Scott Counts, and Eric Horvitz. 2013. Social Media as a Measurement Tool of Depression in Populations. In Proceedings of the 5th Annual ACM Web Science Conference (Paris, France) (WebSci '13). Association for Computing Machinery, New York, NY, USA, 47--56. https://doi.org/10.1145/2464464.2464480Google ScholarDigital Library
- Munmun De Choudhury, Scott Counts, Eric J. Horvitz, and Aaron Hoff. 2014. Characterizing and Predicting Postpartum Depression from Shared Facebook Data. In Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing (Baltimore, Maryland, USA) (CSCW '14). Association for Computing Machinery, New York, NY, USA, 626--638. https://doi.org/10.1145/2531602.2531675Google ScholarDigital Library
- M. De Choudhury and E Kiciman. 2017. The language of social support in social media and its effect on suicidal ideation risk. In Eleventh International AAAI Conference on Web and Social Media (2017).Google ScholarCross Ref
- Munmun De Choudhury, Emre Kiciman, Mark Dredze, Glen Coppersmith, and Mrinal Kumar. 2016. Discovering Shifts to Suicidal Ideation from Mental Health Content in Social Media. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA) (CHI '16). Association for Computing Machinery, New York, NY, USA, 2098--2110. https://doi.org/10.1145/2858036.2858207Google ScholarDigital Library
- Wamil M. Kapur S. Alberts J. Badley A.D. Decker G.A.-Rizza S.A. Banerjee R. Banerjee-A Dennis, A. and COVERSCAN study investigators. 2020. Multi-organ impairment in low-risk individuals with long COVID. medrxiv PrePrint (2020). https://doi.org/10.1101/2020.10.14.20212555Google ScholarCross Ref
- Jennifer L. Derenne and Eugene V. Beresin. 2006. Body image, media, and eating disorders. Academic psychiatry 30, 3 (2006), 257--261.Google Scholar
- Rashi Desai. 2022. How to scrape millions of tweets using snscrape. https://medium.com/dataseries/how-to-scrape-millions-of-tweets-usingsnscrape-195ee3594721Google Scholar
- Morgan S. Dowell A. McLeod D. Bushnell J. Dew, K. and S. Collings. 2007. ?It puts things out of your control': fear of consequences as a barrier to patient disclosure of mental health issues to general practitioners. Sociology of health & illness 29, 7 (2007), 1059--1074. https://doi.org/10.1111/j.1467- 9566.2007.01022.xGoogle ScholarCross Ref
- Paul Dodemaide, Lynette Joubert adn Mark Merolli, and Nicole Hill. 2019. Exploring the therapeutic and nontherapeutic affordances of social media use by young adults with lived experience of self-harm or suicidal ideation: A scoping review. Cyberpsychology, Behavior, and Social Networking 22, 10 (2019), 622--633. https://doi.org/10.1089/cyber.2018.0678Google ScholarCross Ref
- E. Dong, H. Du, and L. Gardner. 533--534. An interactive web-based dashboard to track COVID-19 in real time. Lancet Infect. Dis 20 (533--534), 2020.Google Scholar
- Elena Dusi. 2020. L'infettivologo: Il 20% dei malati resta positivo al virus per 40 giorni. la Repubblica Cronaca (2020). https://www.repubblica.it/cronaca/2020/05/20/news/l_infettivologo_il_20_dei_malati_resta_positivo_al_virus_per_40_giorni_-301030967/Google Scholar
- Erika Edwards. 2020. CDC: One-third of COVID-19 patients who aren't hospitalized have long-term illness. NBC News (2020). https://www.nbcnews.com/health/health-news/monumental-acknowledgment-cdc-reports-long-term-covid-19-patients-n1234814Google Scholar
- Tim Elfrink. 2021. Texas Roadhouse CEO dies by suicide while battling ?unbearable' post-covid-19 symptoms, family says. Washtington Post (2021). https://www.washingtonpost.com/nation/2021/03/22/texas-roadhouse-kent-taylor-suicide/Google Scholar
- Rosa Falotico and Piero Quatto. 2015. Fleiss' kappa statistic without paradoxes. Quality & Quantity 49, 2 (2015), 463--470.Google ScholarCross Ref
- Domingo Palacios-Ceña Víctor Gómez-Mayordomo María L. Cuadrado Fernández-de Las-Peñas, César and Lidiane L. Florencio. 2021. Defining postCOVID symptoms (post-acute COVID, long COVID, persistent post-COVID): an integrative classification. International journal of environmental research and public health 18, 5 (2021), 2621.Google Scholar
- Centers for Disease Control and Prevention. 2022. Long COVID or Post-COVID Conditions. https://www.cdc.gov/coronavirus/2019-ncov/longterm-effects/index.htmlGoogle Scholar
- Paul Garner. 2020. For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion. BMJ Opinion (2020). https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-rotracted-illness-need-help-to-understand-and-copewith-the-constantly-shifting-bizarre-symptoms/Google Scholar
- Doga Gatos, Asli Günay, Güncel Kirlangiç, Kemal Kuscu, and Asim Evren Yantac. 2021. How HCI Bridges Health and Design in Online Health Communities: A Systematic Review. In Designing Interactive Systems Conference 2021 (Virtual Event, USA) (DIS '21). Association for Computing Machinery, New York, NY, USA, 970--983. https://doi.org/10.1145/3461778.3462100Google ScholarDigital Library
- Erving Goffman. 1959. The Presentation of Self in Everyday Life. Doubleday, New York.Google Scholar
- Van Herck M. Delbressine J.M.-Vaes A.W. Meys-R. Machado F.V. Houben-Wilke S. Burtin-C. Posthuma R.-Franssen F.M. Goërtz, Y.M. and N. van Loon. 2020. Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome? ERJ Open Research 6, 4 (2020). https://doi.org/10.1183/23120541.00542--2020Google ScholarCross Ref
- Marianne Guenot. 2021. Long COVID patients say they feel gaslit by doctors that still don't believe them. Business Insider Science (June 2021). https://www.businessinsider.com/long-covid-patients-experience-gaslighting-2021--5Google Scholar
- Xinning Gui, Yu Chen, Yubo Kou, Katie Pine, and Yunan Chen. 2017. Investigating Support Seeking from Peers for Pregnancy in Online Health Communities. Proc. ACM Hum.-Comput. Interact. 1, CSCW, Article 50 (dec 2017), 19 pages. https://doi.org/10.1145/3134685Google ScholarDigital Library
- Tonje Gundersen. 2011. ?One wants to know what a chromosome is': the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociology of Health & Illness 33, 1 (2011), 81--95. https://doi.org/10.1111/j.1467--9566.2010.01277.xGoogle ScholarCross Ref
- Xinyu Guo and Xu Chen. 2021. The Impact of COVID-19 on the Blood Supply Chain: Effective Strategies to Avoid Blood Shortage. In The 2021 7th International Conference on Industrial and Business Engineering (Macau, China) (ICIBE 2021). Association for Computing Machinery, New York, NY, USA, 8--13. https://doi.org/10.1145/3494583.3494601Google ScholarDigital Library
- Joseph Heffner and Marc-Lluis Vives adn Oriel Feldmanhall. 2021. Anxiety, gender, and social media consumption predict COVID-19 emotional distress. Humanities and Social Sciences Communications 8, 1 (2021), 1--7. https://doi.org/10.1057/s41599-021-00816--8Google ScholarCross Ref
- M.E. Hochberg. 2020. Importance of suppression and mitigation measures in managing COVID-19 outbreaks. arXiv preprint arXiv:2005.03323 (2020).Google Scholar
- Huang L. Wang Y. Li-X. Ren L.-Gu X. Kang L.-Guo L. Liu-M. Zhou X. Huang, C. and J. Luo. 2021. 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. The Lancet 397, 10270 (2021), 202.Google ScholarCross Ref
- Yong Huang, Melissa D. Pinto, Jessica L. Borelli, Milad Asgari Mehrabadi, Heather Abrihim, Nikil Dutt, Natalie Lambert adn Erika L. Nurmi, Rana Chakraborty adn Amir M. Rahmani, and Charles A. Downs. 2021. COVID symptoms, symptom clusters, and predictors for becoming a long-hauler: looking for clarity in the haze of the pandemic. MedRxiv (2021). https://doi.org/10.1101/2021.03.03.21252086Google ScholarCross Ref
- Joanna L. Hudson and Rona Moss-Morris. 2019. Treating illness distress in chronic illness: Integrating mental health approaches with illness self-management. European Psychologist 24, 1 (2019), 26. https://doi.org/10.1027/1016--9040/a000352Google ScholarCross Ref
- Birtel M.D. Awenat Y.F. Fleming-P. Wilkes S.-Williams S. Huggett, C. and G. Haddock. 2018. A qualitative study: experiences of stigma by people with mental health problems. Psychology and Psychotherapy: Theory, Research and Practice 91, 3 (2018), 380--397. https://doi.org/10.1111/papt.12167Google ScholarCross Ref
- Jina Huh. 2015. Clinical Questions in Online Health Communities: The Case of "See Your Doctor" Threads. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (Vancouver, BC, Canada) (CSCW '15). Association for Computing Machinery, New York, NY, USA, 1488--1499. https://doi.org/10.1145/2675133.2675259Google ScholarDigital Library
- Jina Huh and Wanda Pratt. 2014. Weaving Clinical Expertise in Online Health Communities. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Toronto, Ontario, Canada) (CHI '14). Association for Computing Machinery, New York, NY, USA, 1355--1364. https://doi.org/10.1145/2556288.2557293Google ScholarDigital Library
- Matej Gjurkovic Ivan Sekulic and Jan ?najder. 2018. Not just depressed: Bipolar disorder prediction on reddit. arXiv preprint arXiv:1811.0465 (2018).Google Scholar
- Corey H. Basch Eunsun Park Betty Kollia Jacques, Erin T. and Emma Barry. 2022. Long haul COVID-19 videos on YouTube: Implications for health communication. Journal of Community Health 2022 (2022), 1--6.Google Scholar
- Andrew S. Kanter. 2021. The Problem with Problem Lists-and How EHR Functionality Can Help Fix Them. Cheif Healthcare Executive (May 2021). https://www.chiefhealthcareexecutive.com/view/the-problem-with-problem-lists-and-how-ehr-functionality-can-help-fix-themGoogle Scholar
- Jemma Kennedy. 2020. I'm a Covid-19 ?long-hauler". For us, there is no end in sight. The Guardian (2020). https://www.theguardian.com/commentisfree/2020/jul/26/im-a-covid-19-long-hauler-im-still-dealing-with-pain-fatigue-and-miseryGoogle Scholar
- Nurit Kirshenbaum, Kylie Davidson, Jesse Harden, Chris North, Dylan Kobayashi, Ryan Theriot, Roderick S. Tabalba, Michael L. Rogers, Mahdi Belcaid, Andrew T. Burks, Krishna N. Bharadwaj, Luc Renambot, Andrew E. Johnson, Lance Long, and Jason Leigh. 2021. Traces of Time through Space: Advantages of Creating Complex Canvases in Collaborative Meetings. Proc. ACM Hum.-Comput. Interact. 5, ISS, Article 502 (nov 2021), 20 pages. https://doi.org/10.1145/3488552Google ScholarDigital Library
- Holly Korda and Zena Itani. 2013. Harnessing social media for health promotion and behavior change. Health promotion practice 14, 1 (2013), 15--23.Google Scholar
- Rachel Kornfield, David C. Mohr, Rachel Ranney, Emily G. Lattie, Jonah Meyerhoff, Joseph J. Williams, and Madhu Reddy. 2022. Involving Crowdworkers with Lived Experience in Content-Development for Push-Based Digital Mental Health Tools: Lessons Learned from Crowdsourcing Mental Health Messages. Proc. ACM Hum.-Comput. Interact. 6, CSCW1, Article 99 (apr 2022), 30 pages. https://doi.org/10.1145/3512946Google ScholarDigital Library
- Lauren Krouse. 2020. This COVID-19 ?Long-Hauler" Has Had Symptoms for More Than 120 Days. Prevention (2020). https://www.prevention.com/health/a33432800/long-term-covid-19-symptoms/Google Scholar
- Daniel Lambton-Howard, Emma Simpson, Kim Quimby, Ahmed Kharrufa, Heidi Hoi Ming Ng, Emma Foster, and Patrick Olivier. 2021. Blending into Everyday Life: Designing a Social Media-Based Peer Support System. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (Yokohama, Japan) (CHI '21). Association for Computing Machinery, New York, NY, USA, Article 168, 14 pages. https://doi.org/10.1145/3411764.3445079Google ScholarDigital Library
- Zachary Levonian, Marco Dow, Drew Erikson, Sourojit Ghosh, Hannah Miller Hillberg, Saumik Narayanan, Loren Terveen, and Svetlana Yarosh. 2021. Patterns of Patient and Caregiver Mutual Support Connections in an Online Health Community. Proc. ACM Hum.-Comput. Interact. 4, CSCW3, Article 275 (jan 2021), 46 pages. https://doi.org/10.1145/3434184Google ScholarDigital Library
- Cullian Li, Li Jia Chen, Xueyu Chen, Mingzhi Zhang, Chi Pui Pang, and Haoyu Chen. 2020. Retrospective analysis of the possibility of predicting the COVID-19 outbreak from Internet searches and social media data, China. Eurosurveillance 25, 10 (2020), 2000199.Google ScholarCross Ref
- Xiaoxiao Ma, Guanling Chen, and Juntao Xiao. 2010. Analysis of an Online Health Social Network. In Proceedings of the 1st ACM International Health Informatics Symposium (IHI '10). Association for Computing Machinery, New York, NY, USA, 297--306. https://doi.org/10.1145/1882992.1883035Google ScholarDigital Library
- Haley MacLeod, Kim Oakes, Danika Geisler, Kay Connelly, and Katie Siek. 2015. Rare World: Towards Technology for Rare Diseases. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (Seoul, Republic of Korea) (CHI '15). Association for Computing Machinery, New York, NY, USA, 1145--1154. https://doi.org/10.1145/2702123.2702494Google ScholarDigital Library
- Diane Maloney-Krichmar and Jenny Preece. 2005. A Multilevel Analysis of Sociability, Usability, and Community Dynamics in an Online Health Community. ACM Trans. Comput.-Hum. Interact. 12, 2 (jun 2005), 201--232. https://doi.org/10.1145/1067860.1067864Google ScholarDigital Library
- Diane Maloney-Krichmar and Jenny Preece. 2005. A Multilevel Analysis of Sociability, Usability, and Community Dynamics in an Online Health Community. ACM Trans. Comput.-Hum. Interact. 12, 2 (jun 2005), 201--232. https://doi.org/10.1145/1067860.1067864Google ScholarDigital Library
- Lena Mamykina, Drashko Nakikj, and Noemie Elhadad. 2015. Collective Sensemaking in Online Health Forums. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (Seoul, Republic of Korea) (CHI '15). Association for Computing Machinery, New York, NY, USA, 3217--3226. https://doi.org/10.1145/2702123.2702566Google ScholarDigital Library
- Christopher DeFelice Marisa F. Naujokas Jay Sinrod Vanessa A. Cruz-Jessica Stapleton Emily Sinrod Sarah E. Diebel Maria Picone, Sarah Inoue and Jr. Edward Robert Wassman. 2020. Social Listening as a Rapid Approach to Collecting and Analyzing COVID-19 Symptoms and Disease Natural Histories Reported by Large Numbers of Individuals. Population Health Management 23, 5 (2020), 350--360. https://doi.org/10.1089/pop.2020.0189Google ScholarCross Ref
- Saurabh Mehandru and Miriam Merad. 2022. Pathological sequelae of long-haul COVID. Nature immunology 23, 2 (2022), 194--202.Google Scholar
- Elliot G. Mitchell, Rosa Maimone, Andrea Cassells, Jonathan N. Tobin, Patricia Davidson, Arlene M. Smaldone, and Lena Mamykina. 2021. Automated vs. Human Health Coaching: Exploring Participant and Practitioner Experiences. Proc. ACM Hum.-Comput. Interact. 5, CSCW1, Article 99 (apr 2021), 37 pages. https://doi.org/10.1145/3449173Google ScholarDigital Library
- Biller J Siegler JE Shekhar R McCullough LD Harkins MS Hong E Alaouieh DA Mansueto G Divani AA Moghimi N, Di Napoli M. 2021. The Neurological Manifestations of Post-Acute Sequelae of SARS-CoV-2 infection. Curr Neurol Neurosci Rep 21, 9 (2021), 44. https://doi.org/10.1007/ s11910-021-01130--1Google ScholarCross Ref
- Lewis Mitchell Jonathan Tuke Murray, Curtis and Mark Mackay. 2020. Symptom extraction from the narratives of personal experiences with COVID-19 on Reddit. arXiv Preprint (2020).Google Scholar
- Nikki Nabavi. 2020. Long covid: How to define it and how to manage it. BMJ 370 (2020), m3489. https://doi.org/10.1136/bmj.m3489Google ScholarCross Ref
- Aschbrenner K. A. Marsch L. A. Naslund, J. A. and S. J. Bartels. 2016. The future of mental health care: peer-to-peer support and social media. Epidemiology and psychiatric sciences 26, 2 (2016), 113--122.Google Scholar
- Fayika Farhat Nova, Amanda Coupe, Elizabeth D. Mynatt, Shion Guha, and Jessica A. Pater. 2022. Cultivating the Community: Inferring Influence within Eating Disorder Networks on Twitter. Proc. ACM Hum.-Comput. Interact. 6, GROUP, Article 7 (jan 2022), 33 pages. https://doi.org/10.1145/3492826Google ScholarDigital Library
- Kathleen O'Leary, Arpita Bhattacharya, Sean A. Munson, Jacob O. Wobbrock, and Wanda Pratt. 2017. Design Opportunities for Mental Health Peer Support Technologies. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (Portland, Oregon, USA) (CSCW '17). Association for Computing Machinery, New York, NY, USA, 1470--1484. https://doi.org/10.1145/2998181.2998349Google ScholarDigital Library
- Mattavelli D. Rampinelli V. Grammatica A. Raffetti E. Tomasoni M. Gualtieri T. Taboni S. Zorzi S. Del Bon F. Paderno, A. and D. Lombardi. 2020. Olfactory and gustatory outcomes in COVID-19: a prospective evaluation in nonhospitalized subjects. Otolaryngology--Head and Neck Surgery 163, 6 (2020), 1144--1149. https://doi.org/10.1177/0194599820939538Google ScholarCross Ref
- Srikanth Parameswaran and Rajiv Kishore. 2018. Social Support in Online Health Communities: A Social-Network Approach. In Proceedings of the 2018 ACM SIGMIS Conference on Computers and People Research (Buffalo-Niagara Falls, NY, USA) (SIGMIS-CPR'18). Association for Computing Machinery, New York, NY, USA, 93--94. https://doi.org/10.1145/3209626.3209725Google ScholarDigital Library
- Steven D. Passik, Kenneth L. Kirsh, Kathleen Donaghy, Elizabeth Holtsclaw adn Dale Theobald, David Cella, and William Breitbart. 2002. Patientrelated barriers to fatigue communication: initial validation of the fatigue management barriers questionnaire. Journal of pain and symptom management 24, 5 (2002), 481--493. https://doi.org/10.1016/S0885--3924(02)00518--3Google ScholarCross Ref
- Jessica A. Pater, Brooke Farrington, Alycia Brown, Lauren E. Reining, Tammy Toscos, and Elizabeth D. Mynatt. 2019. Exploring Indicators of Digital Self-Harm with Eating Disorder Patients: A Case Study. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 84 (nov 2019), 26 pages. https://doi.org/10.1145/3359186Google ScholarDigital Library
- Jessica A. Pater, Oliver L. Haimson, Nazanin Andalibi, and Elizabeth D. Mynatt. 2016. ?Hunger Hurts but Starving Works": Characterizing the Presentation of Eating Disorders Online. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (San Francisco, California, USA) (CSCW '16). Association for Computing Machinery, New York, NY, USA, 1185--1200. https://doi.org/10.1145/2818048.2820030Google ScholarDigital Library
- Jessica A. Pater, Lauren E. Reining, Andrew D. Miller, Tammy Toscos, and Elizabeth D. Mynatt. 2019. "Notjustgirls": Exploring Male-Related Eating Disordered Content across Social Media Platforms. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (Glasgow, Scotland Uk) (CHI '19). Association for Computing Machinery, New York, NY, USA, 1--13. https://doi.org/10.1145/3290605.3300881Google ScholarDigital Library
- Sachin R. Pendse, Kate Niederhoffer, and Amit Sharma. 2019. Cross-Cultural Differences in the Use of Online Mental Health Support Forums. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 67 (nov 2019), 29 pages. https://doi.org/10.1145/3359169Google ScholarDigital Library
- Elisa Perego. 2020. Twitter Post: May 20, 2020 2:17 PM. Twitter (2020). https://twitter.com/elisaperego78/status/1263172084055838721's=20Google Scholar
- Girvin A.T. Bennett T.D. Bhatia A. Brooks I.M. Deer R.R. Dekermanjian J.P. Jolley S.E. Kahn M.G. Kostka K. Pfaff, E.R. and J.A. McMurry. 2022. Identifying who has long COVID in the USA: a machine learning approach using N3C data. The Lancet Digital Health 4, 7 (2022), e532--e541. https://doi.org/10.1016/S2589--7500(22)00048--6Google ScholarCross Ref
- Wainwright J.L. Proctor, S.L. and P.L. Herschman. 2017. Importance of short-term continuing care plan adherence on long-term outcomes among patients discharged from residential substance use treatment. The American Journal of Drug and Alcohol Abuse 43, 6 (2017), 734--741. https://doi.org/10.1080/00952990.2017.1329315Google ScholarCross Ref
- Carerj M.L. Wieters I. Fahim M. Arendt C. Hoffmann J. Shchendrygina A. Escher F. Vasa-Nicotera M. Zeiher A.M. Puntmann, V.O. and M. Vehreschild. 2020. Outcomes of cardiovascular magnetic resonance imaging in patients recently recovered from coronavirus disease 2019 (COVID-19). JAMA Cardiology 5, 11 (2020), 3357. https://doi.org/10.1001/jamacardio.2020.3557Google ScholarCross Ref
- Rida Qadri. 2021. What's in a Network? Infrastructures of Mutual Aid for Digital Platform Workers during COVID-19. Proc. ACM Hum.-Comput. Interact. 5, CSCW2, Article 419 (oct 2021), 20 pages. https://doi.org/10.1145/3479563Google ScholarDigital Library
- Rajeev Jayadevan Raveendran, A. V. and S. Sashidharan. 2021. Long COVID: an overview. Diabetes & Metabolic Syndrome: Clinical Research & Reviews 15, 3 (2021), 869--875.Google ScholarCross Ref
- Prerna Ravi, Azra Ismail, and Neha Kumar. 2021. The Pandemic Shift to Remote Learning under Resource Constraints. Proc. ACM Hum.-Comput. Interact. 5, CSCW2, Article 314 (oct 2021), 28 pages. https://doi.org/10.1145/3476055Google ScholarDigital Library
- C. Rondet, I. Parizot, J.S. Cadwallader, J. Lebas, and P. Chauvin. 2015. Why underserved patients do not consult their general practitioner for depression: results of a qualitative and a quantitative survey at a free outpatient clinic in Paris, France. BMC Family Practice 16 (2015), 57. https://doi.org/10.1186/s12875-015-0273--2Google ScholarCross Ref
- Carol Perelman Rosalinda Sepulveda Paulina A. Rebolledo Angelica Cuapio Sandra Lopez-Leon, Talia Wegman-Ostrosky and Sonia Villapol. 2021. More than 50 long-term effects of COVID-19: a systematic review and meta-analysis. Scientific reports 11, 1 (2021), 1--12.Google Scholar
- A. Sarker and Y. Ge. 2021. Mining long-COVID symptoms from Reddit: characterizing post-COVID syndrome from patient reports. JAMIA Open 4, 3 (2021), ooab075.Google Scholar
- Lakamana S. Hogg-Bremer W. Xie A. Al-Garadi M.A. Sarker, A. and Y.C. Yang. 2020. Self-reported COVID-19 symptoms on Twitter: an analysis and a research resource. Journal of the American Medical Informatics Association 27, 8 (2020), 1310--1315.Google ScholarCross Ref
- Burkett A.B. Hinds-S.N. Paz A.S. Assing A.-Juneja S. Colpo G.D. Torres L.F. Gusdon-A. McCullough L. Savarraj, J.P. and H.A. Choi. 2020. Three-month outcomes in hospitalized COVID-19 patients. MedRxiv PrePrint (2020). https://doi.org/10.16.20211029Google Scholar
- Anna Kole Segolene Ayme and Stephen Groft. 2008. Empowerment of patients: lessons from the rare diseases community. The Lancet 371, 9629 (2008), 2048----2051. https://doi.org/10.1016/S0140--6736(08)60875--2Google ScholarCross Ref
- Murray B. Varsavsky-T. Graham M.S. Penfold R.S.-Bowyer R.C. Pujol J.C. Klaser K. Antonelli-M. Canas L.S. Sudre, C.H. and E. Molteni. 2021. Attributes and predictors of long COVID. Nature medicine 27, 4 (2021), 262--231. https://doi.org/10.1038/s41591-021-01292-yGoogle ScholarCross Ref
- Chery Teh. 2021. When medical diagnoses miss the mark and their families don't believe them, some COVID long-haulers turn to online groups for help. Business Insider News (May 2021). https://www.insider.com/covid-long-haulers-are-turning-to-online-groups-for-help-2021--4Google Scholar
- Kim S.S. Lindsell-C.J. Rose E.B. Shapiro N.I.-Files D.C. Gibbs K.W. Erickson H.L. Steingrub-J.S. Smithline H.A. Tenforde, M.W. and M.N. Gong. 2020. Symptom duration and risk factors for delayed return to usual health among outpatients with COVID-19 in a multistate health care systems network-United States, March--June 2020. Morbidity and Mortality Weekly Report 69, 30 (2020), 993.Google ScholarCross Ref
- Bai F. Castoldi-R. Barbanotti D. Falcinella C.-Mulè G. Mondatore D. Tavelli A. Vegni-E. Marchetti G. Tomasoni, D. and A. d'Arminio Monforte. 2021. Anxiety and depression symptoms after virological clearance of COVID-19: a cross-sectional study in Milan, Italy. Journal of medical virology 93, 2 (2021), 1175--1179. https://doi.org/10.1002/jmv.26459Google ScholarCross Ref
- Kenneth Lai Neil Dhopeshwarkar Diane L. Seger Roee Sa'adon Foster Goss Ronen Rozenblum Topaz, Maxim and Li Zhou. 2016. Clinicians' reports in electronic health records versus patients' concerns in social media: a pilot study of adverse drug reactions of aspirin and atorvastatin. Drug Safety 39, 3 (2016), 241--250. https://doi.org/10.1007/s40264-015-0381-xGoogle ScholarCross Ref
- Tammy Toscos, Michelle Drouin, Jessica Pater, Mindy Flanagan, Rachel Pfafman, and Michael J. Mirro. 2019. Selection biases in technology-based intervention research: patients' technology use relates to both demographic and health-related inequities. Journal of the American Medical Informatics Association 26, 8--9 (2019), 835--839. https://doi.org/10.1093/jamia/ocz058Google ScholarCross Ref
- Dyer A.H. Jones K. Dunne J. Mooney A. Gaffney F. O'Connor L. Leavy D. O'Brien-K. Dowds J. Townsend, L. and J.A. Sugrue. 2020. Persistent fatigue following SARS-CoV-2 infection is common and independent of severity of initial infection. PloS one 15, 11 (2020), e0240784.Google ScholarCross Ref
- Anupriya Tuli, Shaan Chopra, Neha Kumar, and Pushpendra Singh. 2018. Learning from and with Menstrupedia: Towards Menstrual Health Education in India. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 174 (nov 2018), 20 pages. https://doi.org/10.1145/3274443Google ScholarDigital Library
- Carole C. Upshur, Gonzalo Bacigalupe, and Roger Luckman. 2010. They Don't Want Anything to Do with You": Patient Views of Primary Care Management of Chronic Pain. Pain Medicine 11, 12 (2010), 1791--1798. https://doi.org/10.1111/j.1526--4637.2010.00960.xGoogle ScholarCross Ref
- A.W. Vaes, F.V. Machado, R. Meys, J.M. Delbressine, Y.M. Goertz adn M. Van Herck, S. Houben-Wilke adn F.M Franssen adn H. Vijlbrief, Y. Spies, and A.J. Van't Hul. 2020. Care dependency in non-hospitalized patients with COVID-19. Journal of clinical medicine 9, 9 (2020), 296. https://doi.org/10.3390/jcm9092946Google ScholarCross Ref
- Pérez-Camacho I. Sobrino B. González G.E. Ruíz-Mesa J.D. Plata A. Márquez-Gómez I. Delgado-Fernández M. Castaño M. Oñate F. Valiente-De Santis, L. and F. Orihuela. 2020. Clinical and immunoserological status 12 weeks after infection with COVID-19: prospective observational study. MedRxiv Preprint (2020).Google Scholar
- Dawn O. Braithwaite Vincent R. Waldron and Jerry Finn. 1999. Communication of Social Support in Computer-Mediated Groups for People With Disabilities. Health Communication 11, 2 (1999), 123--151. https://doi.org/10.1207/s15327027hc1102_2Google ScholarCross Ref
- Ruyuan Wan, Zachary Levonian, and Svetlana Yarosh. 2020. How Much is a "like" Worth? Engagement and Retention in an Online Health Community. Association for Computing Machinery, New York, NY, USA, 413--417. https://doi.org/10.1145/3406865.3418320Google ScholarDigital Library
- Stacy Weiner. 2020. Post-COVID-19 clinics help survivors recover. Association of American Medical Colleges (Aug 2020). https://www.aamc.org/newsinsights/post-covid-19-clinics-help-survivors-recoverGoogle Scholar
- Marsha White and Steve M. Dorman. 2001. Receiving social support online: implications for health education. Health education research 16, 6 (2001), 693--707. https://doi.org/10.1093/her/16.6.693Google ScholarCross Ref
- Jacqui Wise. 2020. Covid-19: Symptoms are common after acute phase of disease, Italian study shows. BMJ 370 (2020), 370. https://doi.org/10.1136/bmj.m2804Google ScholarCross Ref
- S.J. Yong. 2021. Long COVID or post-COVID-19 syndrome: putative pathophysiology, risk factors, and treatments. Infectious diseases 53, 10 (2021), 737--754.Google Scholar
- Chien Wen Yuan, Jessica Kropczynski, Richard Wirth, Mary Beth Rosson, and John M. Carroll. 2017. Investigating Older Adults' Social Networks and Coproduction Activities for Health. In Proceedings of the 11th EAI International Conference on Pervasive Computing Technologies for Healthcare (Barcelona, Spain) (PervasiveHealth '17). Association for Computing Machinery, New York, NY, USA, 68--77. https://doi.org/10.1145/3154862.3154876Google ScholarDigital Library
- Assem Zhunis, Gabriel Lima, Hyeonho Song, Jiyoung Han, and Meeyoung Cha. 2022. Emotion Bubbles: Emotional Composition of Online Discourse Before and After the COVID-19 Outbreak. In Proceedings of the ACM Web Conference 2022 (Virtual Event, Lyon, France) (WWW '22). Association for Computing Machinery, New York, NY, USA, 2603--2613Google ScholarDigital Library
Index Terms
- Social Media is not a Health Proxy: Differences Between Social Media and Electronic Health Record Reports of Post-COVID Symptoms
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