# Digital Landscape of COVID-19 Testing: Challenges and Opportunities

Darshan Gandhi  Rohan Sukumaran  Priyanshi Katiyar  Alex Radunsky  Sunaina
Anand  Shailesh Advani  Jil Kothari  Kasia Jakimowicz  Sheshank Shankar
Sethuraman T. V  Krutika Misra  Aishwarya Saxena  Sanskruti Landage  Richa
Sonker  Parth Patwa  Aryan Mahindra  Mikhail Dmitrienko  Kanishka Vaish
Ashley Mehra  Srinidhi Murali  Rohan Iyer  Joseph Bae  Vivek Sharma  Abhishek
Singh  Rachel Barbar  Ramesh Raskar  PathCheck Foundation, 02139 Cambridge,
USA  MIT Media Lab, 02139 Cambridge, USA  Massachusetts Institute of
Technology, 02139 Cambridge, USA  Harvard Medical School, 02115 Boston, USA
Ash Center for Democratic Governance and Innovation, Harvard Kennedy School,
02138 Cambridge, USA  Institute for Technology and Global Health, 02139
Cambridge, USA  National Human Genome Research Institute, National Institutes
of Health, 20892 Bethesda, USA  University of California, Berkeley School of
Law, 94720 Berkeley, USA  Renaissance School of Medicine, Stony Brook
University, 11794 Stony Brook, USA

###### Abstract

The COVID-19 Pandemic has left a devastating trail all over the world, in
terms of loss of lives, economic decline, travel restrictions, trade deficit,
and collapsing economy including real-estate, job loss, loss of health
benefits, the decline in quality of access to care and services and overall
quality of life. Immunization from the anticipated vaccines will not be the
stand-alone guideline that will help surpass the pandemic and return to
normalcy. Four pillars of effective public health intervention include
diagnostic testing for both asymptomatic and symptomatic individuals, contact
tracing, quarantine of individuals with symptoms or who are exposed to
COVID-19, and maintaining strict hygiene standards at the individual and
community level. Digital technology, currently being used for COVID-19 testing
include certain mobile apps, web dashboards, and online self-assessment tools.
Herein, we look into various digital solutions adapted by communities across
universities, businesses, and other organizations. We summarize the challenges
experienced using these tools in terms of quality of information, privacy, and
user-centric issues. Despite numerous digital solutions available and being
developed, many vary in terms of information being shared in terms of both
quality and quantity, which can be overwhelming to the users. Understanding
the testing landscape through a digital lens will give a clear insight into
the multiple challenges that we face including data privacy, cost, and
miscommunication. It is the destiny of digitalization to navigate testing for
COVID-19. Block-chain based systems can be used for privacy preservation and
ensuring ownership of the data to remain with the user. Another solution
involves having digital health passports with relevant and correct
information. In this early draft, we summarize the challenges and propose
possible solutions to address the same.

COVID-19,

Vaccines,

Healthcare information management,

Privacy,

###### keywords:

Research

1PathCheck Foundation, 02139 Cambridge, USA.
2MIT Media Lab, 02139 Cambridge, USA.
3Massachusetts Institute of Technology, 02139 Cambridge, USA.
4Harvard Medical School, 02115 Boston, USA.
5Ash Center for Democratic Governance and Innovation, Harvard Kennedy School,
02138 Cambridge, USA.
6Institute for Technology and Global Health, 02139 Cambridge, USA
7National Human Genome Research Institute, National Institutes of Health,
20892 Bethesda, USA
8University of California, Berkeley School of Law, 94720 Berkeley, USA.
9Renaissance School of Medicine, Stony Brook University, 11794 Stony Brook,
USA

##  1 Introduction and Related Work

COVID-19, a global pandemic has high transmission and mortality rate,
especially among the elderly, healthcare workers and those with underlying
comorbidities. With the vaccines still undergoing final approvals, the
mainstay of pandemic management depends on key public health intervention
including early detection, mitigation through isolation and contact tracing.
Countries across the world are taking strict measures to manage the
overwhelming and unprecedented impact of the pandemic Digital health
technology, the mainstay of pandemic strategy can achieve superior outcomes
that are difficult to achieve otherwise. Integrating these digital tools into
public health interventions has revolutionized surveillance, testing, contact
tracing, healthcare access and quarantine measures aimed at control and
mitigating COVID-19 spread thereby aiming to reduce COVID-19 infection and
deaths Big data and artificial intelligence (AI), used widely in healthcare,
have also helped in tracking people and thereby reducing the spread of
infection. Migration maps including mobile phones, mobile payment applications
and social media are used to collect real-time data on the location of people.
Machine learning and disease spread models were developed to predict the
regional transmission of the virus that help guide policy and containment
measures. Efficient use of big data has contributed to reduced spread and
early detection, thereby saving thousands of lives. The need to track the
spread of COVID-19 has fuelled the innovation of data containing dashboards
that display variables such as disease burden including number of cases,
deaths, recovered, and active patients.s. Some dashboards could plot trends
according to demographic and geographical characteristics. The limitations of
AI need to be addressed and requires training with COVID-19 datasets. The
accuracy, validity and reliability of these digital tools are a concern. This
viewpoint provides an outline for the application of digital technology in the
landscape of pandemic management and response. Also, highlighting the
challenges and success of various digital technologies used by countries to
manage the pandemic.

Since December 2019, the COVID-19 pandemic has contributed to an exponential
growth in the development of diagnostic technologies and interdisciplinary and
inter-country scientific data sharing. A recent bibliometric study has shown
that the availability of evidence in response to the COVID-19 pandemic has
been much more efficient than other recent epidemic events, such as the
2015–16 Zika virus epidemic and the 2014–16 Ebola virus outbreak due to
technology and science advancements and rapid sharing of information. More
than 2,500 articles related to COVID-19 were published in the first 4 months
of the pandemic, compared to only 88 articles related to both Zika and Ebola
viruses in the same epidemiological period. [1]

The pace at which viral genomic sequences have been available to the public
during the COVID-19 pandemic also illustrates the rapid pace of data sharing
over time. [2] As of 31st December 2019, 19 gene sequences of the SARS-CoV-2
virus were already obtainable through the GISAID database (gisaid.org), which
now has over 40,000 viral genome sequences shared by laboratories around the
globe. As a comparison, it took almost 3 years for the number of sequential
viral genomes to reach 1,500 sequences during the Ebola virus outbreak. The
rapid developments of SARS-CoV-2 genomic sequences contributed to both the
rapid development of the gold standard molecular diagnostic tests for COVID-19
and to the development of simplified protocols for complete viral genome
sequencing and analysis and lab-based serology assays using recombinantly
produced SARS-CoV-2 proteins.

In this early draft, we aim to understand the digital landscape of the current
testing scenarios. We go to the granularity of understanding the User agency
and control, understanding the digital workflow of testing, how various
organisations (or governments) are using the digital solutions for testing.
Furthermore we look into understanding the major challenges in the current
workflow including but not limited to - privacy, security, miscommunication,
trust and laws. We look at various case studies across countries to understand
the effects of different digital solutions and leave an open thread for the
solutions.

###  1.1 User Agency and Control of Data

One of the key challenges in the digital management of testing has been how
the agencies acquire and control the data or the users for their use and the
privacy policies they follow. Confidentiality has been one of the most
important issues and concerns of the digital revolution and given rapid use of
digital platforms on COVID-19 management. Increased privacy concerns are
attributed to several health platforms requiring patients to share their
personal protected health information, including but not limited to the
patient’s name, phone number, email, race, country of birth, SSN, residential
address and even travel history. This is problematic because of the lack of
policies and regulations about the use of personal data. [3] Further, due to
the sensitive nature of the data, users face the security risk of being
tracked, man-in-middle attack and data snooping by a third party.

Thus, it becomes very important to have the right policies set which inform
the user about the need for their data and consent of use from the patient is
a must.

###  1.2 How other epidemic tests are managed (Ebola, HIV, malaria, Swine flu,
zika, etc)

The Zika outbreak in 2016 was a global public health concern and digital
technology played a vital role alongside traditional public health approaches.
Mathematical modelling helped in understanding the Aedes spp. Vectors in terms
of transmission, host-virus interaction, and effectiveness of potential
interventions. Geographical information systems (GIS) including
epidemiological maps were used to estimate magnitude, transmission and spread
of the Zika outbreak. The category of big data included social media analytics
and web-based surveillance particularly on the OpenZika project, Digital
Participatory Surveillance (DPS), and ProMED. DPS is a form of digital
surveillance where the public reports signs and symptoms through a structured
electronic form and the data is summarized via epidemiological maps. Zika
tracker, a smartphone-based diagnostic platform could be used anywhere in the
world to report suspected or confirmed cases of Zika. WHO‘s Zika App is a
similar app that provides real-time data to all users. Researchers in Brazil
developed MinION that is a novel real-time genome-sequencing device. An
insecticide wearable device that releases Metofluthrin (traditional repellant
of Aedes aegypti) reduced the number of mosquitoes attracted. [4]

During the Ebola outbreak, diagnosis was difficult especially in asymptomatic
people. The gold-standard diagnostic test for Ebola virus, the real-time RT-
PCR needed substantial infrastructure, operation and maintenance of complex
equipment, and expertise in molecular techniques. Limitations of the
diagnostic tests were addressed by digital solutions. The Democratic Republic
of Congo (DRC) used the National Health Information System to create a
dashboard called PATH for monitoring Ebola cases. The US Center for Disease
Control and Prevention (CDC), World Health Organization (WHO) and other
organizations worked together to develop digital maps and graphs. In 2019, the
Ministry of Health of DRC launched a national agency for clinical information
and health informatics (ANICiiS). During the 2014-2016 epidemic, mHERO, an SMS
system was set-up to share information with health workers. UNICEF also
launched the Rapidpro free source platform that provided SMS messaging in
Sierra Leone where it was rare to possess a smart-phone, internet, or even
phone credit. [5][6][7]

HIV/AIDS control strategies included digital solutions such as mapping and
maintaining surveillance of high risk behaviors, individual level intervention
that targets key populations (during a low-level epidemic), providing
voluntary testing and counseling (VTC) and screening for sexually transmitted
infections (STIs).

Malaria remains endemic in several countries despite multiple interventions.
Containing malaria outbreaks remained a challenge because it was difficult to
predict who would contract the disease. As a result, resources were not
deployed in the correct region. This caused the outbreak to grow. A quick and
reliable digital solution was required. The National Aeronautics and Space
Administration (NASA) used satellite data to help forecast malaria outbreaks
by identifying areas of prime breeding grounds for these mosquitoes that
overlapped with human population. They use the information on precipitation,
temperature, soil moisture, and vegetation around the world and feed it into a
prediction model and tell where a puddle is most likely to form. Simply
mapping where people reported malaria is not enough as the place of infection
is usually different. They also track humans to see where most people are
getting infected i.e hotspots. But for the purposes of predicting a malaria
outbreak, the map did not tell a complete story. They could successfully make
projections down to the household level, allowing for resources to go where
they’re needed. The population models could be used for tracking not only
malaria, but Zika and Dengue as well. [8] The Digital Solutions for Malaria
Elimination (DSME) Community of Practice (COP) helped in building malaria
surveillance systems that made accurate data reporting easier and thus
improved decision-making processes. [9]

##  2 Testing Workflows

###  2.1 User experience

The rapid spread of COVID-19 has been worrisome for many individuals across
the globe with respect to the safety of security, workflows and measures being
taken to overcome these issues. There is an increasing emphasis on providing
great user experience and information to the citizens so they stay informed
and aware of the recent developments, policies, precautions and measures that
have been taken up to fight the virus.

####  2.1.1 User engagement summary table

In this table, we highlight the similarities and differences in user
engagement within public/government sites, private clinics, employee/campus
organizations, and entering venues (such as flights). It is important to
understand the different facilities which are provided by the different
organizations and institutions and how the public and government sites can be
modified more to support the facility of giving out reminders and covering the
insurances for the patients. Also the entry pass system at the public/
government sites should be more digitised to avoid the issues of data privacy
and spoofing. Adding on, it is most important to provide the scheduling
facility across all the different organizations to avoid the issue of
overcrowding and have a systematic approach in place. Even the test results
should be supported with a detailed report covering points ranging from a
detailed analysis of virus to the precautionary measures that need to be taken
by the patient to avoid getting infected in future, in case they are affected
a report needs to be shared to indicate the exact steps the patient should
take in order to stay protected and at the same time not transmit the
infection to others.

Figure 1: User engagement summary table

####  2.1.2 User Journey Table

It is also important to understand more about the user’s journey and the steps
taken by them in order to get tested. First via social media campaigns,
televisions and youtube videos the end user is educated about the different
COVID-19 testing centres and sites. Using this information the user tries to
explore more about the different sites which may be public, private,
educational sites and draws a comparative analysis between them. Once they are
certain about the type of site/ organisation they would want to visit next
they analyse the different centres and hospitals available for them to visit
and this decision is taken based on several parameters such as the type of
testing available, cost of testing, time to get the results and one of the
crucial points would be the location of thee testing sites. Lastly, once
tested the patient/user tends to receive more updates and reminders on taking
the necessary dosage and also receive timely reminders via messages.

Figure 2: User journey table

####  2.1.3 Test site logistics (LIMS systems, Lab Info Management Systems)
(Quest, LabCorp, Verily, etc)

Figure 3: CDC recommended COVID-19 Flow Screening Process [10]

Figure 3 illustrates the standardised process flow for COVID-19 testing. The
participants should flow in one direction and each of the stations should be
separated by at least 6 feet. Participants begin with a temperature and
symptom check. This is also where participants are given a face covering if
they don’t already have one. Then, they fill out all the necessary paperwork
(pens and clipboards are disinfected in between participants). Participants
proceed to the interview stations where they are screened for symptoms, after
which they are put in testing stations where they are given a swab to collect
their specimen. The specimen is then put into a vial and dropped into a
transport bag. Lastly, participants are then given the information needed to
receive their results [11].

There are many software and data management systems in use as well. Data
management systems are essential during COVID-19 case investigations and
contact tracing. This data is stored in different ways based on the guidelines
of the local jurisdiction or testing sites, but typically is stored in storage
platforms like cloud. It is important for the data to be stored in a way that
preserves anonymity and protection of Personal Health Information (PHI). In
addition, Lab Information Management Systems (LIMS), a type of software
present in most modern laboratories, can be used at COVID-19 testing sites.
LIMS could improve productivity and efficiency of laboratories by increasing
the speed of test processing, reducing costs by automating, and streamlining
lab workflows.

Test sites should be in large open areas (preferably outside) to allow for
effective social distancing. It is also important for test sites to have
centers to isolate patients who test positive for COVID-19. In a test site,
keeping staff members safe is extremely important. The CDC recommends gloves
and face masks for all staff members present at a test site, and gowns and N95
(or equivalent) masks for anyone who will be within 6 feet of any person being
tested. The person being tested should also wear a face mask. Aggressive
sanitation is necessary, including changing gowns, respirators, and face masks
if they are soiled. In addition, these should be replaced in case they are
accidentally touched or if they come in close contact with a person being
tested.

####  2.1.4 Dissemination of results to the user (website, app, phone call,
email, text) (Comcare, Salesforce)

Testing forms a crucial point of intervention for mitigating the COVID-19
pandemic. The results of one’s COVID-19 test along with other relevant
information will assist one’s healthcare provider to make informed decisions
regarding patient’s health including recommending treatment and mitigation
strategies. Timely and proper communication of results will also help in
limiting the spread of COVID-19 to one’s family and the larger community. The
mechanism of disseminating results varies greatly across countries and can be
through web based secure file transmission, an SMS, phone call, email or
within an embedded app portal. Digital or electronic-based reporting would
reduce unnecessary travel and risk of exposure. The timeframe for tests to be
made available depends upon the type of test and the area it was done. The
process for Rapid antigen tests is faster than RT-PCR. Point of care testing
in community settings like schools, college campuses, nursing homes and
employer organisations remain crucial for public health mitigation
strategies.Testing sites ,generally employ the following methods for results
notification:

  * •

Electronic laboratory reporting:It refers to automated messaging of reports
sent using one or more electronic communication portals like SMS, email etc.
ELR ensures that health departments and patients receive timely, accurate,
complete and consistent information and improve the deployment of public
health responses to outbreaks and cases of notifiable conditions.

  * •

Point of Care-Test reporting: it refers to rapid testing where results can be
provided within minutes of the test being administered, thus, allowing for
rapid decisions about patient care. However, results of these tests cannot be
completely said to be reliable.The test results are also required to be
notified to local and state health departments.

  * •

Through fax the test results should include:test performing facility name,
type of test used, explanation of results,patients particulars etc.

Here, below are few of the COVID-19 testing sites by public , private and
employer organisations to illustrate test results dissemination process:

  * •

NHS COVID-19 (Public or gov. testing site): It is a U.K. government testing
site [12], funded by the Department of Health and Social Care (DHSC). Test
results are communicated through text or email. If one uses the NHS COVID-19
-19 app, tests are accessible there only. The results are provided the very
next day but at most, it may take up to 3 days. If one tests positive, one may
be contacted by the NHS and asked for further information

  * •

MIT COVID-19 Pass (Campus Testing Site): Covid Pass is an application for the
MIT community members to use in order to complete requirements for entering
the MIT campus and using the resources which they have access to [13]. In
order to gain access to the campus, one must agree to conditions like daily
health attestation, and regular COVID-19 testing. Testing frequency is
contingent on how often the person is on campus. COVID-19 Pass will notify (
through the email and mobile push notification) about testing status early
each morning. This will help to keep track of when individuals need testing.
Test results are generally provided within 1-2 days which will be available in
COVID-19 Pass App on MIT Atlas and not in HealthElife. Though, tests done
through appointments will have their results visible in HealthElife. If an
individual does not yet have full authorization to use the COVID-19 Pass app,
they may still see results at covidpass.mit.edu using MIT Kerberos
authentication. A physical document of the result can also be requested by
call at MIT Medical COVID-19 hotline. If tested positive, MIT Medical will
contact the individual directly and the contact tracing process will begin. If
no communication is made within 48 hours, we can presume tests are negative.
Amidst a global pandemic, the MIT COVID-19 Pass is an efficient and time
saving digital solution. In the hassle and rush of getting work done in the
morning, when someone may forget that they need to be tested, the COVID-19
Pass app will notify them.

  * •

Minnesota Department of Health: It is a public health department that provides
community testing [14]. If the test comes negative, one will receive a text
and/or email notifying that one can access results online. If there is no
access to the internet, there will be a number on which calls can be made for
results. In case it is positive, one will receive a phone call from the triage
line.

  * •

Henry Ford Health System: The Henry Ford Health System has provided an online
COVID-19 screening tool to assess risk [15]. Remote monitoring and virtual
consultation in the form of E-visits and video visits has been made possible.
The Henry Ford Health System has provided an online COVID-19 screening tool to
assess risk. Remote monitoring and virtual consultation in the form of
E-visits and video visits has been made available.

  * •

Carewell Urgent Care: Carewell [16] is a community-based health care system
that provides both patients and employers COVID-19 testing services.For
employers, results will be communicated through fax. For others, in the case
of the PCR test, results are displayed on the Quest Diagnostics Website while
antigen test results are posted on carewell urgent care website itself. The
dissemination of results is a crucial step in the user experience since it
plays an important role to make sure the user is aware of the precautionary
measures to be taken, will help make more informed decisions and also keep
them updated about the current testing workflows and practices.

####  2.1.5 Efficacy, ethical and privacy concerns

An immunity passport based on vaccine-induced immunity would eliminate some of
the moral hazards and ethical concerns raised by experts: that some non-
infected individuals would see it as an incentive to expose themselves to the
virus in order to develop antibodies [ref] (needs fix) as a way of receiving
immunity passports and practice herd immunity. There’s also a concern people
would be penalized for low-risky behavior resulting in a lack of exposure to
the virus, which would make them ineligible for a card based on infection-
related immunity.

Yet, other efficacy, ethical and privacy concerns remain relevant to digital
passports based on vaccine-induced immunity. Evidence suggests [17] that,
despite being immune, an individual might still transmit disease and infect
others. Though different places are planning for non-discriminatory and equal
access vaccine distribution, there are multiple unknown challenges along these
lines. This could hinder the effectiveness of digital immunity passports .
Otherwise, according to ethicists, digital immunity passports might increase
racial and social inequalities [18] already exacerbated by the pandemic,
repeating the history of immunity passports during “yellow fever” epidemics at
the beginning of the 20th century. These were used as a means of racial
discrimination, and oppression. Digital immunity passports could also
facilitate social exclusion [19] and discriminatory work environments, where
“an official stamp of immunity to COVID-19, or personal willingness to risk
the disease” would “… become a prerequisite for employment”. [18]

Finally, the immunity certificates’ credentials could create privacy and
security risks. And the centralized nature of a digital credential system,
where a single institution would be responsible for data collection and
credential management, could lead to privacy violations and abuse of power.
Dakota Greuner from Harvard Edmond J. Safra Centre for Ethics’ COVID-19 Rapid
Response Impact Initiative argues [20] that for any digital health passports
to be effective, it should possess three features:

  1. 1.

Be privacy-preserving \- Personal data should only be managed by the user,
stored on the device, and shared only after explicit user consent. It also
should be encrypted and secured by biometrics. Selective disclosure of
identifiers should be incorporated in the design (for example, age but not
birth date etc.) [20]

  2. 2.

Be portable and widely adopted – It should be based on open standards, so it
is broadly usable across systems and devices.

  3. 3.

Be trustworthy – This could be achieved with a digital signature of
authenticity secured by the use of cryptography, so that information on the
date and the credential could not be changed or hacked.

Decentralized systems of credentials deployed at a large scale are being
suggested as a “privacy-protecting model of immunity certificates.” [20] Owing
to the decentralised and trustworthy framework, block chains have come across
as a solution to deliver critical information in a secure and privacy
preserving way.

With the nature of health records and issues like record linkage, privacy and
misinterpreted results (due to false positives or miscommunication) it becomes
difficult do extract insights from them. This coupled with the lack of trust
(as health information is very personal) makes it difficult to have data
shared. This results in data silos and many missed opportunities of
information sharing and understanding of health information. Blockchain based
solutions can help to mitigate some of these issues as the data ownership is
still will the respective person (or hospital) and it ensures security and
reliability. A few of the impactful applications for COVID-19 response which
are contact tracing, sharing and handling patients data employ the use of
Blockchain.

####  2.1.6 Digital Health Verification

From Ireland to Chile, efforts are underway worldwide to introduce health
immunization passports as a way of easing out social distancing rules and
allowing for individuals to go back to work, travel or go out to public
venues, such as restaurants and sports events [21][22]. These digital
immunization passports are meant to be a digital equivalent of paper
certificates [20], indicating the holder is at low risk of transmitting the
coronavirus, providing evidence of acquired immunity to the virus, by having
recently tested negative to the virus, having antibodies or been vaccinated.
Immunity passports have been compared to international certificates of
vaccination, such as the “Carte Jaune” for yellow fever. However, there are
significant differences between the two types of documents to be noted. Such
credentials could take the form of a wristband / wearable device, a digital
certificate via smartphone application [17] or a biometric ID card, among
others. The majority of initiatives focus on digital credentials that could be
carried on users’ smartphones (for instance in the form of the QR code).
Individuals with an immunity passport could be exempt from physical
restrictions and could return to work, school, and daily life. However,
immunity passports pose considerable risks including, by not limited to,
scientific risk, practical risk, equitable risk and legal challenges.
Considering all these risks , the users should be wearing masks and follow
minimum safety standards.

The immunity passports rely on two concepts: infection-related immunity and
vaccine-induced immunity. Both raise issues of “the degree of immunity induced
and the duration of immunity” [17]. WHO is not recommending [23] an
introduction of infection-related immunity passports based on “the lack of
sufficient evidence that people with COVID-19 antibodies are immune to new
COVID-19 infections.” [24] Vaccine-induced immunity as a basis for immunity
passports is more promising, with recent results in animal trials revealing a
correlation between vaccines and protection. A uniform vaccination, experts
say, could provide a more “predictable pattern and duration of immunity.”

####  2.1.7 Examples of digital health passports

As early as April 2020, countries and companies have started to look into
digital health passports based on potential infection-related immunity. They
did so in an effort to speed up economic recovery and help people to come back
to work, travel or participate in sports. These and others are expected to be
expanded to certify vaccination once it is available.

The list of available solutions is growing day-by-day with companies rushing
to conquer the safe-back-to-work market, including IBM Watson Digital Health
Passport [25], VHealth Passport by VST Enterprises [26], WIShelter by WISeKey
[27], COVI-Pass by Tento Health [28], and other solutions introduced by German
IDNow and UK companies Onfido and Yoti.

  1. 1.

Chile released certificates: Chile has started a roll out of smartphone-based
“release certificates” instead of “immunity passports,” currently valid for 3
months and shared in the form of the QR codes [29] issued to people that did
not have any symptoms for 14 days after testing positive for COVID-19.

  2. 2.

Estonia digital immunity passport: In Estonia [30], a digital immunity
passport developed by the “MTÜ Back to Work” non-profit formed by tech
companies such as Transferwise, Guardtime or and Bolt. Similarly, to a Chilean
solution, users share the information about their test results and medical
certificates via a QR-code generated after digital authentication.

  3. 3.

Health Passport Ireland: Ireland began a digital health passport pilot in
August [31]. It is based on privacy-preserving technologies, with only an
authorized medical administrator allowed to create Health Passport Ireland
accounts and make updates of the test results. The app displays green status
if the test result was negative, red if positive and amber if a new test is
required [21]. The color-code certification system is somewhat similar to the
apps that have been introduced in China [22] and the UAE’s Alshosn app [32].

  4. 4.

COVID-19 Vaccination Certificate pilot: Most recently, WHO established an
international partnership between Estonia on WHO Digital COVID-19 Vaccination
Infrastructure [33] based on blockchain technology for a decentralized and
secure data management and authentication of an digital International COVID-19
vaccination certificate based on the vaccine-related immunity. The system,
based on a web platform and an app, will be tested via a 12-week pilot in
Estonia, and if successful, it might become a standard of the future when the
vaccine is available on a large-scale and vaccine-immunity is proven to be
effective.

  5. 5.

COVID Credentials Initiative: The COVID-19 Credentials Initiative (CCI) [34]
is an international community of more than 300 members from over 100
organizations hoping to deploy and/or help deploy privacy-preserving
verification-based credential projects in order to reduce the spread of
COVID-19 and strengthen our societies and economies. The CCI has launched the
usage of digital identity in order to curb the spread of COVID-19. Their aim
involves developing “immunity passports” and much more. In this, The CCI uses
verifiable credentials. Inspired by the functional utility of a physical
credential (e.g. the cards in one’s wallet), a verifiable credential (VC) is a
declared assertion that contains documented claims about a person or a
particular organization. The niche of VCs that make them so pivotal is that
they’re digitally native and cryptographically secure, providing a great
privacy-preserving alternative to other types of credentials, if used
responsibly. Upon accepting a VC (e.g. a driver’s license) from a trusted
issuer (e.g. a government body), holders can generate proof with minimal
information (e.g. over 18) to validate to a verifier (e.g. a liquor store )
that they posses their own VCs with specific information (e.g. age),
qualifying them for particular types of access defined by the verifier. And
there is no need for direct contact between the issuer and verifier throughout
the process.

  6. 6.

Travel health passports: Airlines and tourism organizations are also
introducing digital health passports for travelers to enable safer cross-
border travel. United and Cathay Pacific [35] are piloting a program called
CommonPass [36], a privacy-by-design, globally interoperable platform
developed by The Commons Project in collaboration with The World Economic
Forum and other public and private partners. It allows individuals to access
via app their test results. In the future, they also will be able to access
their vaccination records, available from trusted sources [37] and give
consent to use those records to validate their COVID-19 status. ClearMe, a
biometric identification solution developed by Secure Identity LLC, currently
used by Delta and United Airlines as well as numerous sporting facilities,
includes Health Pass [38] as a free feature. It allows for real-time screening
for possible symptoms via surveys on the app and temperature-checks at kiosks
installed at the venues and generates a QR-code with a verified identity and
health-check status. In July, the Tourism Data Driven Solutions (TDDS), a
Spanish software company, developed Hi+ Card [39], a mobile app supported by
the UN World Tourism Organization (UNWTO), that is meant to serve as an
international health identification card. The solution uses blockchain
technology and encryption and is General Data Protection Regulation (GDPR)
compliant.

Digital Health Verification is one of the most factors that needs to be
addressed to ensure the ethical, political and social concerns. The health
passports might not eliminate the threat completely, but is an essential tool
in this pandemic. Furthermore, these health passports should be privacy
preserving, trustworthy and widely accepted. It is also important to be
mindful of the potential social and racial discrimination that might entail a
health passport based solution.

###  2.2 Dashboards and Tools for Public Health

Dashboards and other web tools play a very important role in sharing the
message about the magnitude, severity of the COVID-19 crisis and its impact on
health. There are numerous key testing players which are leading the way and
helping significantly with testing and analysing the pandemic situation.
Combined with the testing efforts, having a visual representation of the
number of country-wise cases along with a wide array of filters to study
socio-demographic and geographical variations can be of great use. Dashboards
enable us to serve this very purpose. With the purpose of getting a grasp on
the COVID-19 pandemic, numerous dashboards have been created at university
level, regional, national and global level.

####  2.2.1 Dashboard tools for labs

The COVID-19 diagnostic testing is carried out to check if an individual is
infected with the SARS-CoV-2 (the virus that causes COVID-19), a detailed
overview about the clinical landscape of testing has been covered by Gandhi
et. al [40]. Mainly two tests were aproved by The US Food and Drug
Administration (FDA) for detecting of COVID-19, which is the PCR test and the
Rapid Antigen test. All the testing laboratories are CLIA certified. CLIA, The
Clinical Laboratory Improvement Amendments are United states federal
regulations and regulatory standards that are applicable to every clinical
laboratory testing, except clinical trials and basic research which are
carried out on humans in the United States of America.[41] Testing is of
utmost importance in current times and some of the leading players when it
comes to testing include Quest Diagnostics [42] which handles approximately
20% of the testing efforts across the USA with over 40 years of proven
effectiveness and experience in handling infectious disease testing, Medpace
Central Labs [43] who have been committed to assisting in fighting against the
COVID-19 pandemic, Icon [44] who offer a wide array of services right from
testing to maintaining a coronavirus observatory which is a powerful dashboard
which provides updates regarding the vaccine trails, regulatory updates,
diagnostics and much more related to COVID-19 via Twitter, Syneos Health, [45]
the only fully integrated biopharmaceutical solutions organizations have been
taking extensive measures in helping battle the pandemic. Some other leading
names when it comes to testing are Verily, BioReference Laboratories, and
Mayoclinic to name a few. Verily [46] has introduced Project Baseline which is
designed to support people right from screening through testing at respective
community-based testing sites and receipt of individual test results. As of
September 2020, 6L people have been tested through the Baseline COVID-19
program. BioReference Laboratories [47] have played a key role in the crisis
as well as provided support to various patients as well as government
agencies. Mayoclinic [48] which is an American non-profit organization focused
on patient care, research and education has also played a significant role in
terms of testing. It is crucial to understand about the various individuals
who are involved in the testing workflow and how their contribution is vital
to the success of preventing the spread of the virus and carrying out tests
effectively and optimally.

####  2.2.2 Dashboard tools and software for public health, govt, and CDC/WHO

Dashboards are the landing pages for interactive maps and visuals showing
where the virus has spread. It gives a breakdown of which nations, states,
cities, and neighboring areas have positive cases and could predict which
regions are likely to see new outbreaks. This helps in predicting future
trends and taking action such as putting area restrictions or a complete
lockdown. Data dashboards provide latest figures on the number of positive
cases (mild, moderate and severe), recoveries, deaths, infection rate, and
cases per million of the population in that area. While some of them also give
resource-related information that includes availability of beds, testing kits,
PPEs, masks, and ventilators, dashboards also give diagnostic test-related
information including number of tests and positivity rate.

Government: The World Health Organization (WHO) dashboard is one of the most
broadly-accessed and predicated on visualization techniques of the COVID-19
pandemic. The general populace can navigate this dashboard easily by
discovering numbers across the world, such as infected, dead, and recoveries.
In addition, the WHO dashboard assists users in evaluating COVID-19 data in
real-time as graphics change based on the ever-changing situation. It gives
information regarding COVID-19 cases globally in the form of Choropleth and
bubble maps. It gives information on new cases, confirmed cases, and number of
deaths. The data table covers different regions, states, and areas which also
deals with transmission classification. The group demonstrated of COVID-19 on
the WHO dashboard provides data on the follow-up guidance for comprehending
the pandemic. For example, users can understand the method used to determine
the COVID-19 information and to update the dashboard in real-time. The
Explorer section directs the public on trying to navigate through the
dashboard and offering to help them to make sense of the COVID-19 statistics.

The Centers For Disease Control And Prevention (CDC) COVID-19 data tracker
gives information about the total number of positive cases, deaths, trends
including demographics and population factor. It also compares the trend in
different states and helps in forecasting future trends for the United States.
Interestingly, it also includes community impact of the pandemic in terms of
mobility of individuals and social impact such as news reports on school
closures, localized outbreaks, state of emergency declarations, etc. The CDC
dashboard persists to be one of the most frequented systems, as the COVID-19
pandemic continues with the community using dashboard updated information to
comprehend the virus. Unlike others, the CDC supports a framework of all
factors necessary for the Pandemic Assessment, including the dates of
infection and the racial groups affected. This dashboard comprises a segment
at the top in which users could see a preview of existing COVID-19 data prior
to actually moving ahead to other areas.

University level: The only way to grasp and understand the magnitude of the
COVID-19 pandemic for the masses is through visualizing the data pertaining to
the crisis. People, in general, can be overwhelmed by huge numbers and may
find the patterns contradicting. Visualization of the COVID-19 scenario makes
it easier for everyone to analyze and understand the situation in a better
way. Experts at all levels, right from university-level to government
organizations have published COVID-19 dashboards at global, country, state,
and regional levels showcasing an array of parameters right from a comparative
analysis of the COVID-19 cases in the previous day or month to the number of
recovered patients and much more. At the University level, the dashboard
visualized by Amherst College [49] has made much noise by being the only
college to receive an A++ rating by We Rate COVID-19 Dashboards [50] which is
a panel of academic and medical experts who rate dashboards created by
universities and colleges across the country. The top 5 universities who have
excelled at providing data of the vicinity via dashboards according to the
ratings are Amherst College [49], Wagner College [51], Tulane University [52],
Ohio State University [53], and George Mason University [54] as of 12th
November 2020. These dashboards provide an overview of the key metrics for
their vicinity. The daily cases, hospital capacity among them, average
positive cases, and many other parameters are included, The student/faculty
and in the campus cases are also displayed at a daily, weekly, and monthly
level along with the number of isolation cases. These parameters combined with
the many other parameters can help anyone visiting the vicinity to analyze the
scenario and make an informed decision accordingly.

National level: The government, administration and healthcare experts need to
keep an eye on the overall COVID-19 situation in the country. A dashboard, at
the national level remains the cornerstone to monitor long term impacts and
trends, quantify the burden and assist in decision and policy making. The CDC
COVID-19 Dashboard [55] is easily one of the most visited dashboards across
the United States of America with the public using it to understand the virus
better as the pandemic continues to accelerate. The CDC Dashboard stands out
amongst other dashboards since it considers all the factors which are
necessary for pandemic evaluation like racial groups affected and infection
dates as well. The dashboard by Carnegie Mellon University [56], CovidCast is
another national level dashboard that shows a Mapbox level overview which is
based on survey data. They show numerous parameters like hospitalized cases,
percentage of the population with symptoms, etc. This data doesn’t include the
statistics for individual tests but has a view of the percentage of the
population(corresponding to the survey) who have been tested and are
positive/negative, based on antigen tests. However, the point that needs to be
taken into account here is that this dashboard is based on survey data and not
validated by the government or any other facility. Similarly, governments
worldwide have shared public dashboards for effective analysis of the
situation. The Canadian government website [57] can be used to analyze the
general trend of the COVID-19 situation and shares immense knowledge right
awareness resources to symptoms and treatments. Radio Canada [58] is another
dashboard that provides a nationwide view of Canada in terms of COVID-19 along
with the testing figures. The Government of India’s Ministry of Health and
Family Welfare’s website [59] also provides nationwide data including daily
active cases, discharged cases, deaths along with other information. New
Zealand’s Ministry of Health [60] also displays data related to the confirmed
cases, a brief analysis of the current scenario, location wise distribution of
cases, the tests data and much more. Etalab [61] offers a consolidated view of
the official data provided by Public Health France for understanding the
COVID-19 pandemic better in France. Furthermore, numerous dashboards have been
developed at the local and district level to monitor community trends.

Global level: Since the epidemic of COVID-19, the John Hopkins dashboard has
demonstrated clear and real-time updated information on the coronavirus. This
dashboard offers insight into the information from countries accumulated by
John Hopkins University including a rational view of the transmission of the
disease from each location. This COVID-19 varies from country to country as
seen on the dashboard and thus it helps us to compare trends across countries.
Instances, deaths, and recoveries are confirmed on the side panel of the John
Hopkins dashboard. Automatic virus dashboard updates encourage people to
identify the nature of the virus and the spread of COVID-19. The John Hopkins
chart provides virus hotspots through red marks around the world on various
continents.

The Washington University dashboard gives an outline of COVID-19 infections
worldwide by using confirmed cases and remaining infections to assess
explanatory variables. Identifying an outbreak like COVID-19 includes the
definition of an inflection point and the advantage of the public in
comprehending the metamorphosis of the disease outbreak. The seafoam green
slash texture on the dashboard enables users to see the movement of the
pandemic and to estimate peak and curve levels. This dashboard produces
information from diverse sources, including CDC and WHO, in relaying of
coronavirus relevant information to the public. The simplified user design of
this panel enables users to create a split second about disease outbreak by
trying to compare figures. Infection, mortality, and recovery numbers on the
dashboard guide users to explore the extent of the disease outbreak and to get
a clear understanding of the geographical environment. The Washington
University dashboard uses computational resources and technology to enhance
the precision of observed trends.

Worldometer [62], another powerful global dashboard goes the extra mile and
shows the number of serious/critical cases, total cases per million
population, deaths per million population. The dashboard also gives updated
country-wise information on total tests conducted and tests per 1 million
population. It gives visual representation of newly infected vs newly
recovered, death rate vs recovery rate, growth factor of daily new cases and
trends based on age and gender. Interestingly, it gives information on
fatality rate by age, sex and comorbidity. The dashboard is very exhaustive
since it provides various important graphs for all countries. The Worldometer
and other dashboards immensely contribute in taking into account and
understanding the depth of the COVID-19 pandemic in our area, city, region,
country, and even our respective continent

Microsoft’s Bing team has launched a website to follow the status of
coronavirus outbreaks worldwide. The system provided all up-to-date infection
statistics for each country. As an interactive map, the tracker allows people
to browse the nation to see a particular number of cases and related articles
from different publishers. Data are reported to be grouped from sources
including WHO, the US Centers for Disease Control and Prevention (CDC), and
the European Center for Disease Prevention and Control (ECDC).

The Coronavirus dashboard is developed by Thebaselab, and benefits by bringing
a near-real-time, broad perspective of coronavirus. The color red is a tad
alarmist, however, the white background is pretty well balanced. Like the JHU
dashboard, The Coronavirus developed by Thebaselab [63] summarises known case
stats on every country which has been affected so far. Thebaselab also began
publishing stories to show how the dashboard tends to work and how coronavirus
compares with other major epidemics. BBC is trying to offer a good highlighter
on how coronavirus has spread in the last few months. Visuals are static and
the BBC also remains an important source of assessing burden of COVID-19 among
the most remote and inaccessible areas globally including regions of Iran,
South Korea and Italy, Comparable to the BBC, the Gray Lady’s very own
dashboard is doing what the New York Times does better: it gives the public an
easy-to-understand education about what’s going on. There are no neat looking
graphics or interactive charts, but there is still a useful breaking down of
how each major continent has been affected and how they are struggling to
contain the virus.

Websites related to COVID-19 testing: Many organizations have come forward to
establish an online platform to cater to COVID-19 -19 related help. While
plenty of them are involved in contact tracing, there are many other websites
focusing on other aspects of COVID-19 services.

These websites provide common people a user-friendly, mobile means to gather
the information they are on the lookout for. For example, some websites serve
the purpose of self-assessment of COVID-19 for users. Coronavirus Self Checker
[64] by CDC on Microsoft Azure platform employs an interactive tool where
individuals respond to COVID-19 related questions. Based on the responses,
individuals are provided advice on seeking medical care. COVID-19 Screening
tool [65] by Apple helps identify COVID-19 related signs and suggests the next
steps of action.

Some websites help users find COVID-19 test centers in their locality.
Castlight came up with COVID-19 Test Site Finder [66] to provide users with
information on test centers in their geographical area of interest. The
website also includes a self-assessment provision. A government website [67]
offers details about testing sites in each state. Verily has eased the process
of booking appointments for COVID-19 tests through its website Project
Baseline. [68]

Hence, the need for a dashboard which provides granular, structured and well
formatted information without overloading the user (public, organisations,
governments etc) is increasing exponentially. The dashboards can further help
to understand the trends and patterns of the virus and how it has been
affecting the various regions and places around the world, at the level of a
university, state, nation or even global.

##  3 Approaches and Challenges

With the introduction of different solutions digital or otherwise, we are
bound to come across multiple challenges that impact both the individual and
community as a whole. There are several challenges, regulations, norms and
solutions which govern aspects of healthcare data collection, dissemination,
analysis and its use in designing interventions or making policies which
impact communities. These challenges transcend the means (physical or
digital), space (geographical locations) and stakeholders (individuals,
companies, governments, etc) by having effects on people who share the data,
governments, healthcare providers etc. We set out to look at the different
approaches currently in motion for protecting healthcare data and look at the
various challenges that arise. Some of the challenges are partially addressed
by existing solutions, while a large number of them still need improvisation.
We examine scenarios at different socio-political levels where these
challenges have unravelled differently, followed by a brief overview of their
unintended consequences.

###  3.1 Current Techniques

####  3.1.1 Privacy Policies

Healthcare data in the US is protected primarily by the provisions of Health
Insurance Portability and Accountability Act, 1996 ( “HIPAA” ) which operates
on a federal level. Several states and sectors have their own laws which
operate in tandem with HIPAA. The strongest of them being the recent
California Consumer Protection Act 2018 ( “CCPR”).[69] HIPAA regulations even
allow for the Preemption of State Law, wherein if a state law sets more
stringent standards of protecting data and its disclosure, then the state law
prevails over HIPAA. [70]

The Family Educational Rights and Privacy Act of 1974 ( “FERPA” ), The
Americans with Disabilities Act of 1990 ( “ADA” ) are some examples of sector
specific laws which also operate on a federal level.

The General Data Protection Regulation ( “GDPR” ) by virtue of its extra-
territorial effect [71] is also relevant in this scenario since it is
applicable to any entity that collects or controls the healthcare data of EU
citizens in the US.

####  3.1.2 Data breach/rogue employee (security protocols)

The pie chart represents the type of breaches occurred in 2019 alone according
to the information provided in [72]

Figure 4: Reasons for IT breaches in 2019 according to [72]

In the past 10 years there has been an upward trend in the number of breaches
which have happened. The breaches in 2019 were approximately twice more than
the average number of breaches in the previous 9 years. A major cause of these
breaches is owing to unauthorized access of confidential information,
information technology incidents like Anthem Inc and data theft incidents,
thefts etc. A brief distribution of incidents of data breach based on the type
of breach is shown in the above pie chart. This is in accordance with the
reports from [72]. The rapid use of digital technology to manage COVID-19 data
provides a unique platform for data driven loss of privacy information through
multiple channels.

The unauthorized entries from employees could be due to negligence, errors, or
malicious intent. Furthermore, often the loss of information happens through
stolen physical records or misplaced patient records which contain a lot of
PII (“Personally Identifiable Information”) and PHI (“Protected Healthcare
Information”). The fact that medical data is more life-long and cannot be
changed exacerbates the issues associated, unlike in the case of any financial
data breaches. This longevity makes it a long-term threat for the person whose
data was compromised. Another fact to consider is that the highly
interconnected nature of health care devices like - insulin pumps, pacemakers,
scanning devices, etc could leave threats open to not just the leakage of
information but also on the medical health of people relying on such medical
aids. [72]

A survey from Accenture [73] in Feb 2017 revealed that 26% of U.S. consumers
or more than one in every four Americans are a victim of the healthcare data
breaches. Furthermore, a large percentage of the people who took the survey
(about 50% of breach victims) suffered from medical identity theft, with an
average of $2,500 out-of-pocket costs due to the healthcare data breaches. To
make matters worse, about 50% of the respondents shared that they were not
informed by the company/legal institution about the breach, i.e., they learned
of the breach themselves after they’d been alerted to an error on their
benefits explanation, credit card statement, or similar documents. [74] These
are possible pitfalls that will be accompanied by mismanagement of the large
scale data collection happening in light of the COVID-19 pandemic.

####  3.1.3 Case studies

To inform our analysis we have conducted a few case-studies on the management
of COVID-19 tests around the world with a special focus on South Korea, China,
India, Vietnam, and Germany. Each of these countries has adopted different
approaches to handling the pandemic and the sections below cover the
approaches and measures taken by each of them to tackle the virus.

  * •

India: India remains one of the world’s hotspots for COVID-19 with rapid rise
in infections (more than 9 million) [75] and high recovery rates. It also
provides an interesting dynamic of constitutional, intellectual and social
challenges. For eg. India is very densely populated constituting several
religions, and has an already volatile economy. Beyond this, India is also a
big exporter of pharmaceutical and medical equipment. Further, speaking at a
press briefing in Geneva, Switzerland on Monday, Mike Ryan, WHO Emergencies
Programme Director, said that it was essential for India to introduce ramped
up measures at a public health and societal level, to control and suppress the
disease. “India is a hugely populous country”, he said. “The future of this
pandemic will be determined by what happens to densely-populated countries”.
[76]

India at the moment has no legislation that requires the protection of
healthcare data and data protection in general. Within the Constitution
however, the right to privacy has been found to be a fundamental right [77]
under the Right to Life and Liberty [78], as declared by the Supreme Court.
The Information Technology Act, 2000 read with the Information Technology
Rules 2011 - providing context of procedures, sensitive personal data and
information reasoned with security practices - have been found to be inept.
Nevertheless, there are two draft legislation: Personal Data Protection
Bill,2019 (pending in Parliament) and Digital Information Security in Health
Care Act (put out by the Health Ministry and specifically deals with sharing
of healthcare data). These new pieces of legislation hope to bridge the gap
between privacy considerations and public health.

On account of the pandemic, the Indian Government launched a contact tracing
app “Aarogya Setu” to tackle COVID-19. The software application clearly
mentions data sharing upfront in a conspicuous place when consent is gained
during user registration in the Application. This helps informs the potential
users about data sharing through this Application. The details of the personal
information gathered, the method in which it is gathered, and by whom as well
as the purpose for which it will be used is set out in its Privacy Policy
[79]. Besides, the Government has initiated a National Digital Health Mission
as a part of which unique digital IDs will be provided as a single source of
health information for the patients, government, and healthcare providers
through interoperable health records. The NHA (National Health Authority) will
play a crucial role in the development of these policies and managing NDHM.
However, the lack of a legal framework for data protection in the country has
increased the risks related to digitization.

Privacy issues with Aarogya setu: 1) App fails to clarify which ministry or
department will be accessing data suggesting interdepartmental exchanges of
personal information. This makes ensuring accountability challenging. 2) No
legal framework to regulate the application forcing users to accept T&C and
privacy policy given by the government. 3) Uses location data via GPS trails
in addition to Bluetooth, deviating from “privacy-focused global standards”
which are confined to Bluetooth-based technology like TraceTogether
app(Singapore) and framework suggested by MIT as a tool to monitor movement of
patients and contact tracing. 4) The unique digital identity in Aarogya Setu
is a static number, which increases the probability of identity breaches.

  * •

Vietnam: Vietnam lacks a unified comprehensive data protection legislation.
Instead, it has a very fragmented mechanism for regulating data privacy and
required levels of protection through a number of laws like Civil Code, Penal
Code, Law on Cyber Information Security, Law on Information Technology, Law on
Cybersecurity, and sector-specific laws (“Vietnamese Data Privacy Laws”).
These legal instruments, as a general principle, are personal data of
individuals. While the laws fail to define the scope of personal data and the
definition also varies between sectors, the laws are interpreted to protect,
at a minimum, information that would enable the identification of an
individual. The primary legislation regulating data protection is
Cybersecurity law. It is to be noted that unlike cybersecurity laws in other
jurisdictions (inspired by the GDPR of the EU) the Cybersecurity Law of
Vietnam shares similarities with China’s Cybersecurity Law enacted in 2017.
Such legal precedents focus on providing the government with the ability to
control the flow of information, instead of enforcing data privacy rights for
individual data subjects. [80] In addition, the Law on Information Technology
requires that the entity collecting personal data must provide data subjects
with information about the form, scope, place, purpose of collecting,
processing, and using personal data. Further, the collection, storage, use,
and transfer of such data must have the consent of such a person [81].
Vietnam’s Law on Information Technology (IT Law) requires organizations and
individuals that collect, process and use personal information of other people
in the network environment to obtain the consent of those people unless
otherwise provided by law.Severe or Emerging Contagious Diseases fall within
the definition of “Class A Infectious Diseases” under the Law on Prevention
and Control of Infectious Diseases (LPCID) and individuals/ organizations in
Vietnam are required to take sanitation, disinfection and sterilization
measures according to instructions of competent health agencies. As a general
principle, Vietnamese Data Privacy Laws protect information pertaining to or
belonging to individuals or (to a lesser degree, organizations) that can serve
to personally identify individuals (i.e., personal data). While Vietnamese
Data Privacy Laws do not consistently define what information constitutes
personal data and the definition also varies between sectors, the laws are
interpreted to protect, at a minimum, information that would enable the
identification of an individual. Specifically, the Law on Information
Technology requires that the entity collecting personal data must provide data
subjects with information about the form, scope, place, purpose of collecting,
processing, and using personal data. Further, the collection, storage, use,
and transfer of such data must have the consent of such a person. In the
backdrop of COVID-19 , the Vietnamese gov. launched “BlueZone” (Vietnam’s
Ministry of Information and Communications and Ministry of Health) [82]. The
following are some of the main privacy protection features of Blue Zones: Data
security: The Bluezone app stores data locally and doesn’t send any data to
the system, No location data collection: The Bluezone app does not collect
geo-location data, Anonymity: All Bluezone app users are anonymous to each
other. Only competent and verified health authorities know those whose
infected and who are suspected of infection due to close contact with COVID-19
cases, Transparency: The Bluezone Project codebase is completely open source.

  * •

South Korea: The pandemic response of South Korea has been touted as an
example to be followed by other nations. Nevertheless, its excessive testing
and tracing strategy has come under the radar of privacy-related scrutiny. The
data privacy in South Korea is regulated by three major legislations: Private
Information Protection Act (PIPA), the Act on the Use and Protection of Credit
Information (‘Credit Information Act’), and the Act on the Promotion of
Information and Communications Network Utilization, these amendments were to
which were made recently. The Personal Information Protection Act (PIPA)
implemented in South Korea imposes strict compliance requirements on entities
that collect any potential information that can be used for identifying a
specific person. Citizens also have the right to be forgotten, among other
data ownership right. While organizations in the private and public sectors
are legally obliged to comply with the PIPA, government agencies that require
personal data for public interest purposes can collect and use data without
the need to obtain consent. [83] Although it is expected that organizations
will use personal information on justifiable grounds by evaluating the
‘reasonable relevance’ of personal data and information that they intend to
use and maintaining and preserving relevant records. Countries that sought to
follow this model can face challenges by their own domestic data privacy laws
especially those subjected to GDPR.The mobile application South Korea is using
monitors and tracks the location of all visitors to the country, as well.
Individuals, including tourists, wear a location-tracking bracelet which is
referred to as “smart city tech.” The smart city tech platform shares
information between cities on various things including traffic and pollution
to find vulnerabilities and congestion, which makes it easier to identify hot
spots for COVID-19. [84] The PIPA required data to be deleted post its
utilization for the purpose it is collected.But the government has admitted
that it will be permanently storing data of patients from the previous
epidemic.

  * •

Germany: The German “Datenschutzkonferenz” which is a collective body composed
of independent federal and state data protection authorities notified
guidelines regarding COVID-19 and data protection. According to guidelines,
sharing personal information of individuals infected with COVID-19 or those
suspected of it would be lawful provided revealing their identity is
exceptionally crucial for protecting people they were in contact with. Also,
in such cases, reference should be taken to article 6(1)9c) or (f) of GDPR.For
other instances, health data must be kept confidential and only be used for
the purpose it was collected in the first place.Consent of data subject must
be taken. To keep track of the number of lab tests regarding SARS-COV-2
carried out per week in Germany and how many among them are positive and
negative , the RKI has initated a country-wide laboratory query in Germany.
However, the quantity of laboratories reporting data seems to vary week to
week. And by subtracting each change (per week) from the cumulative total, we
retrospectively work out the cumulative totals at the end of each week.
Because labs are able to post-check the tests of previous calendar weeks in
the test number query of RKI, the initial figures may be revised upwards to a
slight extent in subsequent reports. These sources explicitly state that the
figures refer to tests conducted and that this wouldn’t eqaute to the number
of people tested, because of multiple tests can be done on one person. [85]

Germany launched an official coronavirus tracing app in June 2020 which is
touted to be so secure that even government ministers can use it, though
developers acknowledged few discrepancies. Germany like other EU nations have
chosen against centrally storing data through its tracing app. [86] This step
was taken in compliance with data privacy standards. [87] Smartphone apps have
been claimed as a high-tech tools for tracking down potential COVID-19
infections. Experts state that finding new cases quickly is key to clamping
down fresh clusters of cases, especially as countries progressively emerge
from lockdowns and try to avoid a second wave of deaths and infections. But
governments and legislative authorities in Europe have run into hurdles of
legal and cultural restrictions and are trying to reconcile the necessity for
effective contact tracing with the continent’s strict data privacy and digital
security standards. Germany - where a person’s right to their own data even
after death is rooted in the constitution - has proven to be a particular
challenge. Early government suggestions to use cell tower information and GPS
coordinates for the app prompted a swift backlash.

  * •

China: Several legislations are in shape in the Republic of China for personal
data protection such as National security law of the people’s republic of
china, General provision of the civil law of the people’s republic of china,
and cybersecurity law which in some way similar to General Data Protection
Regulations by European Union. In addition, China has also introduced a draft
data protection legislation recently. The CAC (Cyberspace Administration of
China) released a notice on the protection of personal information when using
big data joint support and defense [88]. The prime objective of this notice
was to set some ground rules for the use of personal information of the users
to control the spread of COVID-19. Specifically, this notice addresses
Limiting Entities: Multiple entities dealing with personal data also raises
privacy issues. Only entities authorized by the National Health Commission, in
accordance with cybersecurity law, should be allowed to collect personal
information for public health purposes, Data collected should have a targeted
approach: Personal information which is collected for the purpose of COVID-19
tracing should not be used for any other purpose, Data minimization: Limited
amount of data should be collected to prevent any further breach of privacy or
misuse of that data collected, and Cybersecurity requirements: A strict and
effective implementation of cybersecurity law will help to prevent personal
information from being misused.

From the above case-studies it is more than evident that we need different
strategies to curb this virus across the globe, to ensure the citizens of the
respective country stay safe and protected. Also, we can see the different
measures taken to address the concerns of data privacy and protection, risk
profiling analysis, social and racial discrimiation and economic development.
These measures could help inform the decisions of countries or regions in
similar situations.

###  3.2 Data silos: Missed opportunity: Due to anonymization, not possible to
conduct detailed analysis

Arising from anonymization efforts in medical centers is the existence of data
silos, a collection of data that is accessible by only one group or
organization. As a solution for data privacy of individuals testing at medical
centers, data silos may be effective, yet they bring about additional
problems. Data silos prevent a possibility to conduct detailed analysis of
COVID-19 testing data, which would be effective in multiple ways, including
evaluating the efficacy of testing methods in different demographics. Such
analysis is made impossible by data silos’ insularity, preventing health
officials from seeing the bigger picture. [89][90] A solution, as part of our
wishlist, is to create a data lake instead; a centralized data repository
optimized for analysis. Data silos are by nature decentralized, which makes it
difficult to enforce a uniform protocol for data governance. A data lake fixes
this additional problem due to its centralized nature. [91] Rather than
achieving anonymization through insularity, a more intelligent approach can be
taken by protecting data privacy with fine-grained, data-centric control.
Furthermore, one of the primary motives of sharing the data is to learn
representations and draw insights from it. Privacy preserving machine learning
has been on the rise in recent times. [92] Strategies like federated learning
- a machine learning setting in which a centralized model is brought to
localized data for training rather than data being brought to the model - can
be used to ensure no explicit sharing of raw data. Split learning may also be
used for this purpose; split learning is a specialized neural network method
in which a designated layer in a neural network, the cut layer, ‘splits’ the
network between client and server. These privacy solutions, among others,
support data lakes as the best of both worlds in efficacy and privacy.

##  4 Solutions that overcome privacy, mismanagement and miscommunication

Many governments around the world have suggested a scheme of health
passports/immunity passports since a clear solution for COVID-19 management
including vaccine distribution remains in its early stages and will take
months before it reaches the common man globally. It is proposed that the
identification of antibodies in COVID-19 virus-causing persons, the SARS-CoV-2
virus, may be used as the basis for health/immunity passports globally [17].
Owing to the transient nature in terms of presence of antibodies, looking at
the presence/absence of it alone could lead to issues. It might be a better
option to look into vaccine based immunisation as an indicator. Adding on, we
believe that a random number index is the best way to connect a user to their
data, rather than a name, phone number, or email address. Later, the user will
use a random number to validate their test results. The research needs to be
done to understand the participant’s knowledge about various aspects such as
the use of masks, the use of hand sanitizer, avoiding going to school, and
college for work can prevent the spread of viruses. There are a lot of
upcoming strategies and areas in which scientists and researchers are trying
to explore and venture to track and avoid the exponential spread of the virus
[93]. These methods help to improve performance, shorten the timeline for
obtaining outcomes, reduce costs and reduce the complexity involved in
carrying out these studies. Some of the prominent references to current and
upcoming test activities are STOPCovid [94] an initiative by MIT researchers
and scientists to provide test facilities at a cheaper cost to non-laboratory
experts to perform experiments in their home or private premises. Next,
leveraging AI for testing, where simpler forms could be used to detect COVID,
such as cough [95], breadth, and saliva. The use of these facilities will not
only make the process simpler and easier to carry out, but will also allow the
authorities to expand the reach of the testing and in turn, help control the
available capital and supplies, but will also extend the testing to the
community level, including mass population testing.

A few of the most important points to be addressed while developing the
solutions are as follows:

  1. 1.

Consent of the individual: It should be a practice to always obtain consent of
the person whose data is being collected. Also, it is the right of the
individual to know about the reason and time period for the data to be
utilised.

  2. 2.

Avoid collecting unnecessary data: It is also suggested to avoid collecting
irrelevant information while carrying out the tests such as getting
information about their location, previous health history

  3. 3.

Authorized use of data by health officials: The data collected should be used
by the public health authorities on a need base purpose only and who are
trained for the same.

  4. 4.

Minimize sharing: One should ensure sharing of data is minimized and is
strictly limited by drafting appropriate laws and policies.

  5. 5.

Decentralization: The data should be stored in a decentralised fashion using
appropriate safeguarding techniques such as encryption, decentralization or
de-identification to avoid or prevent any attempts to hack the data.

  6. 6.

Training of the staff: The staff of the organization should be trained to take
the precautionary measures for containing the virus such as checking the
temperature of the employees, check if they have worn masks and are
maintaining a social distance, maintaining the hygiene of the food and
utensils being used.

##  5 Conclusion

The explosive growth of diagnostic technology is a necessary component of the
Strategic Emergency Preparedness Plan for Epidemic. Subsequently, the
technological landscape of the development of the diagnosis of COVID-19 is
rapidly coming up with new knowledge that is formed on a daily basis. Numerous
platforms for Open and rapid sharing of data has contributed to this rapid
diagnostic development. In this early draft we have introduced the digital
landscape of the testing workflows, the user centric issues and the challenges
and consequences associated with each of these. Further we have enumerated
multiple major dashboards contributing to the surveillance of COVID-19 and
case studies pertinent to the digital management of resources from different
countries. We have mapped the landscape of current testing systems, challenges
and potential solutions.

## Competing interests

The authors declare that they have no competing interests.

## Acknowledgements

We are grateful to Riyanka Roy Choudhury, CodeX Fellow, Stanford University,
Adam Berrey, CEO of PathCheck Foundation, Dr. Brooke Struck, Research Director
at The Decision Lab, Canada, Vinay Gidwaney, Entrepreneur and Advisor,
PathCheck Foundation, and Paola Heudebert, co-founder of Blockchain for Human
Rights, Alison Tinker, Saswati Soumya, Sunny Manduva, Bhavya Pandey, and
Aarathi Prasad for their assistance in discussions, support and guidance in
writing of this paper.

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