Using Open Source, Open Data, and Civic Technology to Address the COVID-19 Pandemic and Infodemic
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Published online: 2021-04-21 38 © 2021 IMIA and Georg Thieme Verlag KG Using Open Source, Open Data, and Civic Technology to Address the COVID-19 Pandemic and Infodemic Shinji Kobayashi1, Luis Falcón2, Hamish Fraser3, Jørn Braa4, Pamod Amarakoon5, Alvin Marcelo6, Chris Paton7 1 National Institute of Public Health, Saitama, Japan 2 GNU Solidario, GNU Health, Las Palmas de Gran Canaria, Spain 3 Brown Center for Biomedical Informatics, Brown University, Providence, USA 4 University of Oslo, Oslo, Norway 5 University of Colombo, Colombo, Sri Lanka 6 Asia eHealth Information Network, Manilla, Philippines 7 Nuffield Department of Medicine, University of Oxford, Oxford, UK spread of COVID-19 [5]. “Infodemics” is a Summary 1 Introduction term, which is defined as the rapid spread of Objectives: The emerging COVID-19 pandemic has caused The new coronavirus infection was first information of all kinds, including rumours, one of the world’s worst health disasters compounded by social reported in Wuhan, China in December gossip and unreliable information related confusion with misinformation, the so-called “Infodemic”. In this 2019 and outbreaks spread rapidly all over to epidemics [6]. From the early stage of paper, we discuss how open technology approaches - including the world. The SARS-CoV-2 virus, and COVID-19 pandemic, WHO’s director data sharing, visualization, and tooling - can address the COVID-19, the resulting disease, has caused general, Tedros Adhanom Ghebreyesus said COVID-19 pandemic and infodemic. one of the most rapidly developing health “We’re not just fighting a pandemic; we’re Methods: In response to the call for participation in the 2020 disasters in generations. The World Health fighting an infodemic” (2020 Munich secu- International Medical Informatics Association (IMIA) Yearbook Organization (WHO) declared it a “pandem- rity conference [7]). WHO and public health theme issue on Medical Informatics and the Pandemic, the IMIA ic” on March 11 [1]. As of January 23, 2021, organizations of each country are struggling Open Source Working Group surveyed recent works related to the WHO dashboard reported there had been to ensure that publishers provide accurate the use of Free/Libre/Open Source Software (FLOSS) for this 92,098,879 confirmed cases of COVID-19, information on their websites and media to pandemic. including 2,098,879 deaths in the globe [2]. avoid repeating and spreading such misinfor- Results: FLOSS health care projects including GNU Health, Open- As the disease became more prevalent, mation [8, 9]. In addition, the infodemic has MRS, DHIS2, and others, have responded from the early phase populations became increasingly concerned caused discrimination and prejudice against of this pandemic. Data related to COVID-19 have been published and social unrest has been reported includ- people of Asian origin and stigmatization of from health organizations all over the world. Civic Technology, ing protests against non-pharmaceutical those infected with COVID-19 and health and the collaborative work of FLOSS and open data groups were interventions such as “lockdowns”. Misin- workers [10, 11]. Open source software considered to support collective intelligence on approaches to formation related to COVID-19 propagated and open data initiatives can provide more managing the pandemic. through mass media reports and social accountability and transparency of data Conclusion: FLOSS and open data have been effectively used networks and risk causing panics or undue sources, helping to combat the secrecy of to contribute to managing the COVID-19 pandemic, and open complacency exacerbating the health con- algorithms and data sharing typical of many approaches to collaboration can improve trust in data. sequences of the disease [3]. In the United social media platforms. States, a comment from President Trump Our working group has been studying Keywords about injecting disinfectant misled people free/libre/open-source software (FLOSS) in COVID-19, Public Health, Open data, Free/Libre/Open source into drinking the disinfectant [4]. In Japan, the medical field and extended the scope to software face masks became scarce from February open data and open science [12, 13]. From 2020, and toilet paper disappeared due to the COVID-19 pandemic and infodemic, we Yearb Med Inform 2021:38-43 panic buying because of the mistaken belief have found that open-source and open data http://dx.doi.org/10.1055/s-0041-1726488 that they were made from the same paper as collaborations, termed “Civic Technology’’, masks. The International Telecommunica- worked efficiently against COVID-19, and tion Union has officially denied the rumors report this concept as a working group that the 5G network was associated with the paper here. IMIA Yearbook of Medical Informatics 2021 39 Using Open Source, Open Data, and Civic Technology to Address the COVID-19 Pandemic and Infodemic ecosystem consists of different components, GNU Health provides an epidemiologi- 2 FLOSS Projects Responses such as Electronic Medical Record (EMR); cal surveillance report. Real-time epidemic to COVID-19 Hospital Management System (HMIS); curves and demographics to assist in studying Laboratory (LIMS); clinical genetics and an- the incidence and prevalence in many infec- As we have previously reported, FLOSS alytics/epidemiology engine, among others. tious as well as non-communicable diseases. projects are increasingly utilized in the med- The Personal Health Record (PHR) compo- The government can study the causes and the ical domain [14–16]. During the COVID-19 nent, MyGNUHealth, will be released in Q1 impact of these conditions on different groups pandemic, FLOSS groups have responded 2021. GNU Health has been implemented of society, ranging from the molecular to the from the early stages, building on large in countries around the globe from primary social determinants of health [23]. installed bases in many Low and Middle-In- care centers, research institutions, to large, In April 2020, GNU Solidario and the come Countries (LMICs) with experience national-level implementations. GNU Health project partnered with the from dealing with previous epidemics in- GNU Health has developed the “Contact European Commission “EUvsVirus hack- cluding Ebola. Well established examples Tracing” package that is being used in the aton” as civil society and public authority are described below (Table 1). context of COVID-19. It’s also useful in the partners, promoting, teaching and showing control of other infectious diseases, such as the benefits of Libre Software in the Public Ebola or tuberculosis. The government of Health domain, particularly in the context of 2.1 GNU Health Entre Ríos, Argentina is currently using the the COVID-19 pandemic [24]. GNU Health is a Libre digital health eco- contact tracing package to track COVID-19 system from the NGO GNU Solidario [17]. cases in the public health institutions of GNU Health is an international, communi- Diamante [21]. ty-driven project that provides the tools for The GNU Health Federation has been 2.2 OpenMRS individuals, health professionals, institutions chosen as the COVID-19 real-time obser- OpenMRS is an open source, standards-based and governments to proactively assess and vatory by the government of Argentina. and modular electronic health record (EHR) improve the underlying determinants of Argentina National Research and Develop- used clinically in at least 44 LMICs [19, health, from the socioeconomic agents to the ment Agency (Agencia de Promoción de la 25]. The main focus has been on the care molecular basis of disease [17]. It manages Investigación, el Desarrollo Tecnológico y of infectious diseases including human the internal processes of a health institution, la Innovación (Agencia I+D+i)) chose Dr. immunodeficiency virus (HIV) and tuber- such as financial management, stock & Sassetti’s project on GNU Health Federation culosis (TB), with versions also supporting pharmacies and patient management. The as an Epidemiological Observatory [22]. care delivery for primary care, maternal and child health, heart disease, cancer, and surgery. It has been used for management of acute epidemic diseases in the past including cholera in Haiti, and a custom version was Table 1 FLOSS response to COVID-19. created for use in an Ebola treatment center in Sierra Leone in 2015. This had a tablet Description COVID-19 response interface designed for use by staff with full personal protective equipment (PPE) [26]. GNU Health Hospital Management / Health Contact tracing package Several mHealth platforms have been information system [17,18] Epidemiological reporting adapted to support epidemic management Laboratory, test management including Ebola and COVID-19 such as Vaccination management CommCare [27], Medical Mobile [28] and OpenMRS Electronic health record [19] A new version for COVID-19 clinical Open Data Kit (ODK) [29], providing effec- management with HL7 tive support for screening and contact tracing Fast Healthcare Interoperability Resource in the community. To ensure a complete pic- (FHIR) resources ture of the disease impact and management Symptom screening form Vaccine management these systems need to work synergistically with EHRs in health facilities. The EHR can DHIS2 Health management Information Contact tracing capture clinical presentations of COVID-19 (District Health system [18] Daily, weekly reporting of COVID-19 patients in primary or urgent care, their Information Software) patients Vaccine Delivery Toolkit clinical treatment, progress