Commentary: Recordkeeping as a public good during global pandemic
Universal Declaration of Human Rights. Article 25 (1): Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
“Circumstances” are beyond control around the world, as COVID-19 continues to rage. To regain control we need data, created as data or extracted from textual or cartographic or audiovisual records and evaluated statistically. As Paul Brodeur, a U.S. science reporter, wrote, “Statistics are human beings with the tears wiped off.” The underlying records are full of tears.
The World Health Organization’s Regional Office for the Western Pacific published a very helpful “Medical Records Manual: A Guide for Developing Countries,” and one on electronic health records. It emphasizes that medical records are essential for a patient’s present and future care but also for “the management and planning of health care facilities and services, for medical research and the production of health care statistics.” How each country compiles the statistics varies and to whom the data are made available varies, too. https://apps.who.int/iris/handle/10665/208125https://apps.who.int/iris/handle/10665/208125 ; https://b-ok.cc/book/1126572/864b5e
As the nature of the COVID-19 spread became apparent, the head of the World Health Organization said to the WHO Executive Board, “Firstly, all member states need to share detailed information of the outbreak as part of their responsibilities under the International Health Regulations (IHR).” WHO collects health data from countries worldwide to make projections and analyses. It has tried to harmonize reporting by creating an International Classification of Diseases (ICD-11) which is “used to code and classify mortality data from death certificates” and a number of supplements, including the International Classification of Diseases, Clinical Modification, used “to code and classify morbidity data from the inpatient and outpatient records, physician offices” as well as for surveys and research. Around the world, countries are collecting and sending data on corona cases to WHO, which publishes a daily update. But there are difficulties with the data. Partly it is a coding question; while there may be cases of deliberate under-reporting (see China below) or difficulties of communication, at least some of the problem is misidentification of cases of COVID-19 as pneumonia or another illness. And yet the data is all researchers have for epidemiological research to find cures and vaccines and all administrators have for health-management purposes. (For a comparison of three main sources of data on COVID-19 deaths, see https://ourworldindata.org/covid-sources-comparison.) http://www.china.org.cn/world/2020-02/05/content_75675069.htm; https://icd.who.int/browse10/Content/statichtml/ICD10Volume2_en_2016.pdf
The UN High Commissioner for Human Rights Michelle Bachelet, herself a doctor, warned on 6 March, “”COVID-19 is a test for our societies, and we are all learning and adapting as we respond to the virus. Human dignity and rights need to be front and centre in that effort, not as afterthought.” https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25668&LangID=E
Many human rights organizations are concerned about the widespread use of the data being generated by the COVID-19 crisis, both as a danger to privacy and an excuse for dictatorial powers to impose restrictions on essential freedoms.
*European Digital Rights, an association of civil and human rights organizations across Europe, on 20 March called “on the Member States and institutions of the European Union to ensure that, while developing public health measures to tackle COVID-19, they: Strictly uphold fundamental rights; Protect data for now and the future; Limit the purpose of data for COVID-19 crisis only; Implement exceptional measures for the duration of the crisis only; Condemn racism and discrimination; Defend freedom of expression and information.” https://edri.org/covid19-edri-coronavirus-fundamentalrights/
*A coalition of 13 U.S. human rights organizations wrote to all members of the U.S. Congress, “Individuals must retain certain fundamental rights over the data collected from them during or as a result of the crisis, and whatever increased access to personal data is allowed to companies and the government during the emergency should be removed once the emergency has passed.” https://www.citizen.org/wp-content/uploads/Covid-Response-Privacy-Protections-Letter-3-20-with-Signatories.pdf
*Privacy International announced it is tracking the global response to COVID-19 because, “Tech companies, governments, and international agencies have all announced measures to help contain the spread of the COVID-19 virus. Some of these measures impose severe restrictions on people’s freedoms, including to their privacy and other human rights. Unprecedented levels of surveillance, data exploitation, and misinformation are being tested across the world.” https://www.privacyinternational.org/examples/tracking-global-response-covid-19
* Business and Human Rights Resource Centre created a “Depth Area” on its website to report “the latest news on the implications of the outbreak for business and human rights. https://www.business-humanrights.org/en/covid-19-coronavirus-outbreak?mc_cid=35a0fc334b&mc_eid=151854dc7e
Each of these groups could point to UDHR Article 29 (2) in support: In the exercise of his rights and freedoms, everyone shall be subject only to such limitations as are determined by law solely for the purpose of securing due recognition and respect for the rights and freedoms of others and of meeting the just requirements of morality, public order, and the general welfare in a democratic society.
Keeping records is an essential service during this pandemic. The data generated will save us, now and in the future. Perhaps as never before, we recognize recordkeeping is a public good.