Keywords
mobile health - medical informatics - public health - COVID-19
Introduction
The current COVID-19 pandemic demonstrates that there is an urgent need to focus on
evidence-based implementation of digital health. This gains paramount importance since
there is frequently a tendency to focus attention on what could be highly promising
despite being poorly validated in times of urgency. Rigor and evidence need to be
taken into consideration to avoid delays and unforeseen negative consequences.
Further, this pandemic has created a unique opportunity to create quality data which
can enable the achievement of the “Learning Healthcare System (LHS)” paradigm which
implies that knowledge generated within the health care systems in the daily practice
is used systematically to produce the continual improvement in care. This involves
the intersection of digital platforms to create seamless efficient delivery of health
care that also aligns itself continually to changing demands.[1]
[2]
This, in turn will result in a long-term improvement of the quality of the health
care system. This article is a joint call to action from the working groups and special
interest groups of the International Medical Informatics Association (IMIA) for adopting
an evidence-based approach toward deployment of digital health technologies during
the current COVID-19 crisis. We believe that embracing an interdisciplinary scientific
approach will not only consolidate the response, but will also reduce the risk of
increasing health disparities and increase our digital preparedness for future challenges
(e.g., pandemics and natural disasters).
Evidence-Based Health Informatics in Times of Crisis
The current COVID-19 pandemic is affecting health care systems across the globe in
an unprecedented scale affecting not only the prevention and management of the COVID-19
emergency but also how health care is delivered as a whole. There is a rapid expansion
of the use of health informatics innovations often overcoming legal and organizational
barriers that have been in place for decades. The World Health Organization (WHO)
defines in its web site eHealth as “the use of information and communication technologies
for health care purposes.”[3] Further, the 71st World Health Assembly (WHA) in 2018 highlighted the importance
of using digital technologies to reinforce public health resilience including “to
build capacity for rapid response to disease incidents and public health emergencies,”
as stayed in the minutes of the WHA.[4] These digital technologies include many different types of approaches and subtypes
(e.g., telehealth, mobile health, online health and digital therapeutics), but all
of them require, as any health technology, to be built on the best practices and evidence.
The use of information technology (IT) in medicine and health care continues to evolve
into different branches and focus areas. The discipline of health informatics is the
interdisciplinary research field focused on how ITs can support the practice of health
care and public health, this can be seen as a crucial part of medical informatics
or more broadly biomedical informatics,[5]
[6] thus encompassing the scientific foundations of innovation such as telemedicine,
eHealth, mHealth, and a long list of terms to describe those informatics-based innovations
in the health sector.
In the context of a public health crisis, access to accurate evidence-based information
about how safe and effective the health informatics technologies are in aiding the
public health interventions is of paramount importance.[7]
[8] Clinical trials and data of different types (such as public health registries or
Electronic Health Records) are rapidly emerging to validate therapeutic and preventive
pharmacological treatments. However, eHealth solutions are deployed at a large scale
often without rigorous and methodologically sound scientific assessment. Evidence
has been published about the use of eHealth tools in previous public health emergencies
such as the Ebola virus[9]
[10]
[11]
[12] and the Zika virus.[13] In many instances, there have been reports about the need to ensure methodologically
sound evaluation which will support evidence-based decision-making and building a
strategy to reinforce and strengthen the health care systems to increase resilience
and preparedness for the next crisis.[14]
Evidence is broadly defined as the available body of information that attests whether
a proposition is valid. Sackett et al, in his definition of evidence-based medicine,
perhaps the most well-developed area of evidence-based practice, have defined the
field in terms of the “conscientious, explicit, and judicious use of the current best
evidence in making decisions about the care of individual patients,”[15] and it has been further expanded into areas such as public health.[16] The contexts into which digital health systems are implemented are usually highly
complex making randomized controlled trials (RCTs) challenging and often infeasible.
This means that following a hierarchy of evidence that relies solely on RCTs and meta-analyses
may not be appropriate nor practical for evidence-based health informatics where much
of the body of available information on the effectiveness of informatics comes from
observational studies, although there are fast growing numbers of RCTs in health informatics.
Notwithstanding these differences, evidence should remain be the basis of clinical
and public health practice. It enables decision-making to be based on the best available
peer-reviewed quantitative and qualitative researches. This would mean systematic
usage of data/information systems, application of planning frameworks such as learning
health care systems models, community involvement in decision-making, and evaluation.
Dissemination of knowledge to the key stakeholders is important, since acceptance
of technology is often related to how it has been communicated and perceived, also
in addition to the training and skills of intended users.
One of the main challenges stems from the sociotechnical nature of digital health
technologies. These are complex interventions that require well-planned integration
into complex organizational settings where human factors, as well as privacy and security,
play a major role. Consequently, building evidence-based digital health strategies
requires an interdisciplinary and intersectoral approach combining expertise across
disciplines (e.g., health care, informatics, and management,) and sectors (e.g., health
care systems, higher education, health technology industry, and policymakers) to avoid
negative or unintended consequences.[17] We know that implementation challenges, including training and human factors, might
hamper the translation of evidence into health practice, thus requiring an interdisciplinary
approach.[8] Research on implementation challenges have been acquiring extra attention in recent
years, including in eHealth, as a mean to facilitate the meaningful introduction of
new solutions into the health domain.[18]
As in many health innovations, including pharmacological treatments, formative research
needs to happen before clinical trials. In health informatics, usability and design
research can provide early evidence on how innovations will be accepted into clinical
practice. An additional challenge during the current novel coronavirus disease 2019
(COVID-19) pandemic is to ensure that experiences are shared rapidly as part of a
“crisis informatics” approach,[19] and ensuring high-quality data.[20]
An interdisciplinary approach to study the use of ITs in the health care field is
not new, and the field of health informatics has been an interdisciplinary endeavor
for over 60 years. An example of such scholarly community is IMIA, which with 53 years
of existence encompasses over 60 national medical informatics societies and regional
associations, and over 20 groups dealing with special aspects via special interest
groups, task forces, and working groups. Furthermore, the global approach of such
type of scientific societies does allow for rapid sharing of knowledge and expertise
not only across disciplines but also across geographies that might represent very
different socioeconomic and cultural contexts. In addition, scientific societies do
represent independent bodies where knowledge can be freely shared within the scientific
principles. IMIA and its national and regional member societies and associations have
already published some core recommendations in the context of COVID-19, aiming at
guiding public health organizations.[19]
Objective
In this paper, we urge for a joint call for action to use and leverage evidence-based
health informatics as the foundation for the COVID-19 response and public health interventions.
We provide an overview of how the health informatics scientific community is helping
to support the COVID-19 crisis response through tangible examples of how the working
groups and special interest groups of IMIA are helping to build an evidence-based
response to this crisis. Further, we provide some recommendations on key aspects that
should be addressed and/or avoided related to the use of digital health during the
current crisis based on decades of experience in health informatics research.
Methods
Using a qualitative approach, the IMIA board approached leaders of working groups
and special interest groups via e-mail for an overview of the scientific efforts being
taken as the COVID-19 pandemic was spreading across the globe. Each working group
and special interest group compiled its activities and submitted a short summary of
their efforts.
The process for creating this manuscript was led by the IMIA Vice President for Working
Groups and Special Interest Groups. The IMIA Chief Executive Officer (CEO) sent e-mail
invitations to the leadership of the working groups using the IMIA mailing database
(currently 26 groups). That e-mail included short questions (web form) to describe
the role of the different working groups (WGs)/special interest groups (SIG) during
the COVID-19 crisis. After that, the WGs and SIGs were invited to participate in two
brainstorming sessions using video conference where the role of WGs and SIGs were
discussed and early versions of the manuscript were developed. Once a more matured
version of the manuscript was ready, a second round of invitations to all WGs/SIGs
was sent for comments or additional contributions. Discussions on the latest version
of the manuscript were done by circulating the word documents for comments.
The Role of the Health Informatics Scientific Community and the International Medical
Informatics Association
The IMIA WGs and SIGs have made contributions in the context of COVID-19 that is summarized
in [Table 1].
Table 1
Current activities of selected IMIA WGs and SIGs related to COVID-19
|
WG/SIG
|
Description of the WG/SIG
|
WG/SIG contribution regarding COVID-19
|
|
Telehealth
|
The IMIA telehealth working group provides evidence and shares experience on the use
of telemedicine and telehealth technologies including: ethical considerations of telehealth
implementations,[27] training of health care professionals,[28] and governance[29]
|
Review global Telehealth initiatives for the management of COVID-19 such as the provision
of virtual care. Compare strategies across countries to develop global telehealth
guidelines for COVID-19 response and mitigation
|
|
Technology assessment and quality development
|
This working group promoted the evaluation of health technologies related to medical
informatics, including evaluation of safety aspects[30] and other interdisciplinary aspects.[31] Including to promote the theory and practice of evidence-based eHealth by developing
evaluation methods and tools to examine effects of IT intervention on health care
structure, process and patient outcomes
|
Development of evidence-based guidelines for the design and deployment of digital
health solutions during COVID-19. Including, supporting technology assessment for
pandemic management at local, national and regional levels through advocacy and capacity
building. We are calling for:
1. Evidence-based approach to IT interventions to ensure they are safe and effective
2. Rapid and pragmatic evaluation prior to deployment at front line, including iterative
improvement cycles to ensure interventions have a plausible chance of working
|
|
Ethics, privacy, and security of health informatics
|
The Ethics, Privacy and Security of Health Informatics working group deals with the
ethical handling of personal health information collected, used, and disclosed from
treatment to analysis, reporting, and research. This WG is cross-cutting across many
areas and inherently interdisciplinary, specially to address human factors
|
A particular element of key interest in the context of COVID-19 has been how to apply
privacy protections on technologies design for surveillance and contact tracing
|
|
Language and meaning in BioMedicine
|
This working group focuses on formal and natural languages for expressing information
and knowledge in the biomedical domain. This encompasses natural language processing,
knowledge representation languages, design and use of biomedical ontologies, and global
semantic interoperability. These include the application of Natural Language Processing
technics, standardization, and also the use of best practices in data sharing[32]
[33]
|
Data harmonization and initiatives related to COVID-19 sharing of data-driven knowledge
under the FAIR (findability, accessibility, interoperability, and reusability) principles.
Harmonization of data and of data harmonization efforts, in sync with Research Data
Alliance (RDA) and Virus Outbreak Data Network (VODAN)
To collaborate on a technology-agnostic semantic specification of data elements. To
build up corpora of free text as multilingual training material for natural language
processing. To foster collaboration between data creators, data modelers, and data
users
|
|
Open source
|
Creation of medical software using the principles of open source, including the orchestration
of social coding experiences, such as hackathons, and open science[34] by sharing core (e.g., in artificial intelligence applications) while protecting
privacy[35]
|
1. Investigating CIVIC Tech (civil action with open source software and open data)[36] and promote it against COVID-19 pandemics and infodemics. A campaign “STAY HOME
AND WRITE CODE, SAVE MORE LIVES”
2. Promotion to the activities against COVID-19 on GitHub.
3. Open data to the public organization
|
|
Students and emerging professionals
|
The group's role is to inform the new generation of informatics professionals and
promote collaboration, placing a special emphasis on supporting interdisciplinary
research in health informatics
|
The group collaboratively created a survey asking international clinical informaticians
about key solutions and challenges in which health information technology helps to
respond to COIVD-19 challenges. Preliminary survey findings can be found at
http://covidhitimpact.com/
|
|
Nursing informatics
|
The focus of IMIA-NI is to foster collaboration among nurses and others who are interested
in Nursing Informatics to facilitate development in the field. We aim to share knowledge,
experience and ideas with nurses and health care providers worldwide about the practice
of nursing informatics and the benefits of enhanced information management
|
IMIA-NI SIG and the European Federation of Medical Informatics Nursing Informatics
(EFMI NI) are collaborating to offer resources to support nurses with materials about
the use of digital tools during COVID-19 in clinical practice and education.[37] These include videos, articles and presentations, about how to use digital tools
in clinical practice and education addressing daily practice, education and Research
& Development
|
|
Participatory health and social media
|
This WG engages members from the international health informatics community, across
sectors, to identify, explore, collaborate, and disseminate research on the use of
social media for health. Of particular interest are the drivers of change, barriers,
facilitators, and policies necessary for the application of the various social media
categories in the health domain
|
Involved in several infoveillance studies analyzing COVID-19 related issues on social
media
Reviewing the existing evidence on the role of participatory health informatics in
managing and detecting pandemics
|
|
Accident and emergency informatics
|
There is a need to interconnect the IT systems in the early rescue chain of the alerting,
responding, and curing instances. This WG aims to foster sharing and semantic linkage
of health data with environmental sensor data from smart implants and wearables to
smart vehicles and homes, as well as future smart cities
|
In pandemic events, automatic exchange of information is needed across smart devices
such as wearables, vehicles, or homes. We develop concepts to transform smart devices
into diagnostic spaces including secured communication channels and semantic interoperability
|
|
Organizational and social issues
|
Given the increased implementation of health information technology and the focus
on approaches, such as big data, patient participatory medicine and collaborative
care delivery, it is more important than ever to ensure that organizational and social
contexts are considered and studied as part of the design and evaluation of informatics-based
solution
Our objective is to develop and promote scholarly approaches for organizational and
social issues in medical informatics research and care delivery
|
The global COVID-19 pandemic response has exposed significant gaps in information
systems and processes to enable timely health decision-making. Our WG proposes to
collaborate with the AMIA Global Health Informatics WG, AMIA Consumer and Pervasive
Health Informatics WG to identify, review and summarize organizational issues related
to information technology in health care, for example, care delivery models, access
to care and technology, and effectiveness. Specifically, we will examine how the use
of informatics could help support COVID-19 care delivery, and accelerate knowledge
discovery bring to the forefront organizational issues
|
|
Smart homes and ambient assisted living
|
The aim of this working group is the study and promotion of research and development
in the area of smart homes and ambient assisted living applications. While the situation
at hospitals is receiving much of today's attention, a large part of the population
has been or is still confined at their homes without proper access to health services
or supervision. A “smart home” is a residential setting equipped with a set of advanced
electronics, sensors and automated devices specifically designed for care delivery,
remote monitoring, early detection of problems or emergency cases and promotion of
residential safety and quality of life
|
Since capacities in hospitals are limited, most “mild” COVID-19 cases have been sent
for quarantine at their homes, frequently without follow-up and limited possibilities
for monitoring and exchange with medical professionals. A myriad of ease-to-use and
affordable health monitoring solutions and other appliances for Smart Homes have been
developed, amongst others by members of the WG, to help people who decide to remain
at their homes and for health professionals to keep contact with their patients, including
•Developing new models of virtual care to support remote monitoring and care planning
due to COVID-19
•Exploring adaption and use of smart home, sensor technologies and wearable devices
that can be applied to the management of individuals self-isolating at home for COVID-19
symptom development and for symptom management in the community
|
|
Health informatics for patient safety
|
The working group will focus on the following areas where health information systems
are concerned: (1) Identifying and documenting how health information systems and
their associated devices can best be designed, implemented and applied to improve
patient safety), (2) Identifying and documenting software safety issues involving
health information systems and their associated devices
|
We are currently involved in the following activities:
•Evaluating the safety of health technologies that are being used to monitor and mitigate
COVID-19's spread in the community
The focus of our work has been on the following technologies: public health information
systems, remote monitoring technologies for symptom monitoring, information systems
to monitor the deployment of technologies focused on COVID-19 management, decision
support systems for patients' self-assessment of symptoms and health professional
decision support systems for diagnosis and management of COVID-19, and virtual care
solutions[38]
|
|
Human factors engineering for health care informatics
|
Human Factors Engineering is the field of study which is concerned with the understanding
of interactions of humans with elements of their work system, especially with the
cognitive aspects of their interactions with health care technology.[39]
This working group explores methods and practices in design and evaluation for studying
the human–computer interaction in health care. We aim to enhance the understanding
of the impact of interactive health technology design on health care processes to
build evidence regarding design guidelines for optimal and safe interface designs
for health informatics software[40]
|
Due to COVID-19, the uptake and use of interactive health technology by health care
professionals and citizens has taken a flight forward. With regard to human factors
research for health care informatics, we are currently performing a global research
on the design aspects and acceptation factors of the official applications that have
been introduced to monitor and mitigate the outbreaks of the COVID-19 pandemic. In
addition, we are working on the development of a model to promote and support the
performance of ethical review board assessment of user centered design research of
health information technology[41]
The objective of this model is to promote the performance of these studies in a way
that respects the participants' integrity without undermining the innovation and the
responsiveness of research teams, a prerequisite for coping with fast-spreading pandemics
such as that of COVID-19
|
Abbreviations: COVID-19, novel coronavirus disease 2019; IMIA-NI, International Medical
Informatics Association Nursing Informatics; IT, information technology; SIG, special
interest group; WG, working group.
Results: A Call for Evidence-Based Informatics Response to COVID-19
With the COVID-19 outbreak, research concerned with forecasting and predictive analytics
for syndromic surveillance[21] have received remarkable media attention. Increasing reliability and validity of
forecasting or developing mechanisms for blending official datasets, like case statistics
published by the World Health Organization or Centers for Disease Control and Prevention
(CDC), with unofficial channels, such as data feeds from social media or telecommunications
service providers,[22] seem to be “the” most important concern right now. Already, there are examples of
meaningful data sharing initiatives such as the international consortium 4CE,[23] (p3) where electronic health record (EHR) data of COVID-19 patients from nearly
a hundred hospitals is being shared. However, to a much lesser extent, researchers
are focusing on organizational preparedness and postcrisis learning.[24] Even though there is strong evidence that a coordinated approach and small but directed
changes in culture, processes, and IT-reliant solutions may prevent a breakdown of
health care providers in times of crisis,[25] relatively little efforts have been made on this topic (as compared with crisis
response). Our call to action is not only directed toward the crisis response but
actually addressing a long-term perspective including preparedness and postcrisis
learning.
Based on the combined discussion among the scientific working groups of the IMIA,
we have created a list of actions that should take place during the current COVID-19
crisis ([Table 2]), as a mean to reinforce the response and health care systems with the best evidence-based
knowledge in health informatics. Underpinning these recommendations is the expertise
of the IMIA community in the multidisciplinary perspectives, understanding of human
factors, and thoughtful and critical, ethical considerations that should be of central
importance in the development and implementation of digital health tools that have
been rapidly deployed in response to the pandemic. With these foundations in mind,
this involves both things to avoid and things to promote. We should consider that
the right approach will enable the creation of the global Learning Health System built
on real-world evidence and robust scientific foundations. We consider that training
and capacity building is of crucial importance to ensure recovery and preparedness
for the next crisis. This needs to be linked to a clear strategy for evaluation of
ongoing experiences, and the fair and meaningful practices for data sharing and privacy.
All these aspects need to be considered at the local, national, and international
levels through methodological planification and guidelines which include addressing
ethics and human factors.
Table 2
IMIA WG/SIG Recommendations during the COVID-19 pandemic
|
What needs doing
|
What should be avoided
|
|
Training and capacity building: reinforcement of training of health care professionals
and also students (both undergraduate and graduate) on the use of digital health tools
for different tasks such as triage, surveillance, diagnosis, treatment and rehabilitation.
This includes engaging students and emerging health informaticians in creating solutions
for COVID-19 pandemics. Community Health workers, who are the major providers in developing
countries, must be empowered with evidence-based tools, including mobile health tools,
to help them acquire accurate information about COVID-19, help treat and diagnose
their patients, and educate their communities
|
Disempowering patients by not engaging patients in systems design or not providing
patient education and counseling using digital tools
Increasing the digital divide and health inequalities across communities and countries
by creating better services for people with better technological means
|
|
Evaluation: Consolidate evidence on real-world applications used during the COVID-19
pandemic, including an assessment of how COVID-19 has impacted health/clinical practice
using digital tools to define a threshold for future health care delivery.
Take an evidence-based approach to IT based interventions to ensure they are safe
and effective. IT interventions should be evaluated prior to deployment at the front
line, but ensuring that evaluation should is rapid and pragmatic, including iterative
improvement cycles to ensure they have a plausible chance of working
|
Developing initiatives without involving multiple stakeholders relevant for sustainability
(e.g., clinicians, patients, payors, and regulators)
Initiate pilots or any initiative without an assessment of sustainability in the long
run
|
|
Data sharing: define strategies for sharing structured and standardized data relevant
to the crisis, including trained models for risk prediction. Also, establishing automatic
exchange of information, e.g., COVID-19 test results to ensure complete data, better
statistics, and avoids delays. Including the use of Findable, Accessible, Interoperable,
and Reusable (FAIR) principles,[42] standardized terminologies and classification systems
|
Creating data silos and sharing data of low quality that might lead to misguiding
conclusions
|
|
Data privacy: to ensure privacy we should apply the principles of privacy by design
which minimizes potential risks before any system is launched. Including the prevention
of potential cyberattacks to health information systems or the design of contact tracing
solutions that pose a risk to the privacy of citizens. This includes the need of combining
telemedicine with the secure and standardized transmission of health information.[43] Emphasize the need of combining telemedicine with the secure and standardized transmission
of health information
|
Eroding an individual's universal right to privacy in the midst of a crisis situation
such as publicly releasing anonymized information on morbidity and mortality that
could reidentify individuals, leading to racial discrimination, stigma and bias
Adoption of less secure technologies for the transmission of personal data such as
unsecured short messaging systems (SMS) versus secured electronic prescription or
other encrypted systems
|
|
Planification: development of national and international guidelines on how
•To provide telemedicine/eHealth services including when/how to prescribe it
•To protect patient safety and privacy, including data confidentiality
•To pilot and validate of health care devices, technologies, and biomedical testing
during times of crisis
•To tackle social media misinformation
•To ensure that digital health interventions are well positioned with the organization
or country's existing national strategic strategies and infrastructure
•To involve health care professionals, patients, payors, and regulatory bodies on
the organization of telemedicine when face-to-face care delivery is not possible due
to epidemiological crisis
•Understand contextual differences across health systems and its impact on our ability
to share informatics strategies
|
Development of unregulated telemedicine practices that put into legal risks both patients
and health care professionals
Implementation of telemedicine without considering patient safety, local culture,
and other contextual factors
Lack of analysis of impact of new technologies in the workload of health care professionals.
Run into data lock-in, project lock-in, or vendor lock-in
|
|
Ethics and human factors: define potential ethical impacts of rapid deployment of
health technologies, including impact on stigmatization of segments of the population,
increase of health disparities, and any other human and ethical factors. Involving
professionals, patients, and civil society in a systematic way is the best approach
to minimize unintended negative consequence of health technologies
|
Deploying digital health technologies without assessing its impact on ethical, social
and organizational considerations, as well as its impact on reducing disparities in
access and delivery of health care services
|
Abbreviations: COVID-19, novel coronavirus disease 2019; IMIA, International Medical
Informatics Association; IT, information technology; SIG, special interest group;
WG, working group.
Conclusion: A Call for Interdisciplinary Collaboration in Digital Health during the
COVID-19 Pandemic
Collaboration is our recommendation as the best way forward toward a more robust and
equitable global public health system after the COVID-19 pandemic. The involvement
and collaboration of multidisciplinary stakeholders across sectors (i.e., policymakers,
governments, research institutes, consumers, and others) can foster and enable the
desired outcomes and health system. Therefore, we do call on other scientific societies
and any stakeholders involved in the crisis response, including consumers of health
care services, to proactively seek collaboration with the IMIA working groups, as
well as with national and regional associations that do have also related working
groups. In this paper, we provide a substantial corpus of knowledge and evidence;
however, we should consider it to be limited due to the exponential growth on research
and implementation of digital health. To get actionable insights from the implementation
of digital health during the COVID-19 is going to be a research tasks for many years
to come.
Together, we can move digital health from hope and hype to reality and in the service
of consumers and public health. To do that, we would like to encourage the wider scientific
communities to raise awareness about evidence-based digital approaches for COVID-19
by disseminating them in social media, publishing complementary viewpoints, and consensus
statements, so we can be better prepared for the next crisis both at the microlevel
(e.g., patient interaction), mesolevel (health care organization and community), and
macrolavel (e.g., policy).[26]
