Re-tracing the footsteps: Thoughts on implementing guidelines for COVID-19 Surveillance in Low and Middle Income Countries

Rangarirai Matavire (ITI Nordic) discusses how guidelines of Clinical Decision Support (CDS) and Clinical Quality Measurement (CQM) can be implemented towards the monitoring of COVID-19 in low- and middle-income nations.

There has been a proliferation of advanced information system technologies in the public healthcare sectors of Low and Middle Income Countries (LMICs). Asides to a number of Web-based systems, many of these solutions are also built on mobile devices owing to the widespread use of both feature and smart phones, particularly those running on the Android operating system. Mobile devices are particularly useful for the provision of quality healthcare services to communities in remote areas, the often called next billion people. In many LMICs, local and global technology vendors, supported by international funding agencies, are active in developing public health information infrastructures for case-based surveillance, aggregated data reports and analytics. Heterogeneity in adopted technologies persists within and across LMICs, with choices made on custom or generic solutions and licensing models which range from proprietary, through open source, to copyleft. The net result of these interventions is that there is often a number of technologies developed and implemented within countries for different health programs and regions, with scarce usage of communication interfaces and limited alignment of processes between them. Information is consequently fragmented across these landscapes, with each vendor solution implementing its own approach for supporting health workers in the provision of quality care. While these systems are often adopted to encourage improved adherence to healthcare guidelines, research suggests that these systems have not lived up to expectations. The main reason is not whether individual solutions, or implementations, are aligned to guidelines, but rather if the net result of the different technologies has led to the expected improvement. In addition, in times of emergencies, such as the COVID-19 pandemic, guidelines change rapidly as new information comes in thereby exacerbating the problem. The ability of systems to share and implement the fast changing rules becomes of prime importance.

Training of nurses on a Mobile Health Information System in Zimbabwe

To understand how IT is implicated in the agenda for the strengthening of health information systems in LMICs, it is important to look at two of its envisioned roles in the provision of care, that is Clinical Decision Support (CDS) and Clinical Quality Measurement (CQM). Clinical decision support (CDS) is concerned with “reminders and alerts driven by rules” [1]. This has to do with a systems’ ability to provide recommendations to a health worker or patient during the course of care provision. On the other hand, Clinical Quality Measurement (CQM) is concerned with indicators on the quality of care based on the data collected on populations. The need for CDS and CQM is driven by a realisation that health workers do not adequately adhere to narrative clinical guidelines, and technology has been found to increase the quality of care in these contexts. In a situation where COVID-19, a highly contagious virus is concerned, CDS has to do with the ability of a system to generate alerts or reminders that recommend certain courses of action when collected data fires preconfigured triggers. For instance a patients’ travel history, alongside other symptoms, could trigger an alert when an information system recognises that the client was exposed when they visited a place with known high transmission, as has been done for the Zika Virus [2]. The system could therefore recommend that certain measures be taken with the client in question, including requesting a test or sending an alert to a regional response team. CDS is, by design, inherently linked with CQM, where the indicators on the percentage of clients who followed through with the recommended courses of action are analysed for decision making. In this context, the Fast Healthcare Interoperability Resources (FHIR) standard is being increasingly adopted to address the challenge of implementing guidelines across vendor offerings. This standard could enable for rapidly updating guidelines across compliant system systems in the event of emergencies.

Computable Care Guidelines are the standards driven executable resources which can be shared across systems to provide the logic for triggering rules when certain client data points are encountered. While health information systems have traditionally applied their own internal mechanisms to implement narrative care guidelines, there has been a risk of eroding their principles across different computer systems and thereby, increasing fragmentation [1]. Their implementation in a standard such as FHIR offers an opportunity for aligning the quality of care when different IT solutions are used at the point of care. In this context, the developer of the guideline, be it an international agency such as the World Health Organisation (WHO), or a local Ministry of Health (MoH), can publish the computable file for implementation by compliant systems [3]. In the event of an outbreak such as COVID-19, these guidelines can be rapidly changing, and therefore consumed and implemented in real-time by compliant systems. Currently, the World Health Organisation (WHO) is actively developing CCGs for Antenatal care (ANC) for LMICs which are to be implemented by a number of active vendors in these regions. It is therefore possible to see some of the ways in which this approach can be adopted for pandemic response information systems, and the benefits thereof. However, a few systems are close to, or capable of, running these executable guidelines currently. In this COVID-19 context, already compliant systems have much to offer to the response, and to improve the quality of care for clients who are able to benefit from these innovations [4]. It still remains however, that in the short to medium term, LMICs are well advised to channel investments to such infrastructural innovations as they stand to benefit during this, and in future epidemics. The capabilities of this approach are open and therefore present a fruitful direction for health IT research and development.

[1] Aziz A Boxwala, et. al., A multi-layered framework for disseminating knowledge for computer-based decision support, Journal of the American Medical Informatics Association, Volume 18, Issue Supplement_1, December 2011, Pages i132–i139

[2] Sanjeev Tandon, et. al., Emerging Infectious Diseases, Clinical Decision Support, and Electronic Health Records Meaningful Use , Healthcare Information and Management Systems Society (HIMSS), April 2017,  https://www.himssconference.org/sites/himssconference/files/pdf/39_0.pdf

[3] IHE, The Computable Care Guidelines (CCG) profile, https://wiki.ihe.net/index.php/Computable_Care_Guidelines

[4] Grahame Grieve, HL7, #FHIR, and Covid-19, http://www.healthintersections.com.au/?p=3012

DHIS2 for COVID-19 Surveillance: Sri Lankan Use Case

With the current outbreak of COVID-19, Sri Lanka needed to implement adequate precautions to prevent the disease from entering the country as a significant number of tourists from at-risk countries are traveling to Sri Lanka regularly.

One of the main preventive activities for this purpose was screening travellers at the ports of entries and carry out active surveillance until the incubation period is over in the community setting using the existing public health infrastructure.

Establishing a proper information system for surveillance of COVID-19 as a prime requirement of the Ministry of Health and as an initial stage of the surveillance system, the ministry wanted to capture information related to the tourists who enter the country from at-risk countries. To facilitate the above process, the Ministry of Health of Sri Lanka with the collaboration of HISP Sri Lanka developed a District Health Information System (DHIS2) based solution for active surveillance for COVID-19 in Sri Lanka.

This COVID-19 Surveillance System of Sri Lanka was developed by using the tracker component of DHIS2 2.33. Brief technical overview is as follows.

The system consists of one tracker program which has three program stages.

Name, DOB, gender, email, passport number, telephone number, and few other sociodemographic factors are captured at the registration as tracked entity attributes. The first programme stage is also captured at the port of entry along with information for registration. The first which is a compulsory program stage captures information related to immigration, symptoms of COVID-19 disease, possible contacts and the stay in the country.

Second program stage, follow-up (within 14 days) is a non-compulsory repeatable program stage that captures symptoms of COVID-19 disease and any action taken during the surveillance process.

Follow-up (at the end of 14 days), the third program stage is a non-repeatable, compulsory program stage and captures symptoms of COVID-19 disease and any action taken at the end of the surveillance period. This programme stage is the conclusion of the surveillance process.

Currently, contact tracing and treatment modules are not included in the system and there are discussions underway to design them if required.

System implementation was planned at National, Province, District and Medical Officer of Health areas covering the entire country with separate access and dashboards for each level. System implementation and training were reinforced with standard operating procedures and simple user guides. The system also has dashboards which facilitate national level administrators to track the progression of surveillance activities.

Also underway is a smartphone version allowing mobile access for health workers although this is not practiced in all regions.

As of now, data entry at the point of entry to the country is established and training programmes are being conducted to the provincial level staff on the use of the system. The familiarity of public health staff with the DHIS2 platform has greatly facilitated the implementation.

There were some challenges facing the implementation: firstly, limited capacity in terms of available skilled developers was overcome by volunteer developers who were enrolled to help in the software development process.  Other constraints were presented by questions over the ownership of the DHIS2 system where multiple agencies are involved with different rules on access to data.  Finally is the problem of rapidly rolling out training to users to implement the system where quick adoption is of crucial importance.

 

Contact :

 

Dr Pamod Amarakoon pamodm@gmail.com

Postgraduate Institute of Medicine (PGIM)

University of Colombo

160, Prof. Nandadasa Kodagoda Mawatha,

Colombo 07, Sri Lanka 00700

 

https://www.dhis2.org/about

The Potential of India’s Village Health Committees in Containing the Spread of Diseases

Drawing on her research in rural Karnataka, south India, Shirin Madon (London School of Economics and Political Science) discusses the importance of Village Health Committees in taking village-level measures and interventions to contain the diffusion of diseases.

In recent years, many developing countries such as India, Tanzania and Bangladesh have introduced village health committees as part of efforts to improve the functioning and effectiveness of health systems. These are committees that elicit participation from a range of frontline government health workers, local politicians and civil society representatives at the village level. There are two key rationales for this intervention. First, while governments and district agencies hold substantial decision-making power with regards to the planning and execution of health programmes, their actual implementation occurs at the village level and requires active community participation.  Second, many diseases are influenced by water, sanitation and hygiene conditions requiring the joint implementation of programmes under an overall village development agenda.

Since 2012, we have been studying the Village Health Sanitation and Nutrition Committees (VHSNCs) introduced in India by the National Health Mission in 2008 as a flagship programme aimed at promoting community-based decentralisation of primary healthcare. India has lagged behind many other developing countries in terms of improving sanitation, nutrition and hygiene indices and the prevalence of low birth weight is among the highest in the world with diarrhoea a major killer of children under the age of five years. The VHSNCs were introduced to ameliorate the situation by decentralising decisions to a 15 to 20-member sub-committee of the gram panchayat, a village council in which members are elected to serve for a 5-year term, and providing each VHSNC with an annual untied grant of Rs. 10,000 (approximately US$152) payable in three instalments which can be used at the discretion of the village committee.

Village Health Committees in Karnataka, south India

In Karnataka, a state of south India where our research has been based, after several years of building capacity within the VHSNCs, we find that in our study villages the committees serve as vital social spaces for creating awareness amongst low-income communities about the spread of diseases. In particular, since 2012 we have noticed that there has been a drastic reduction in the incidence of diarrhoeal diseases in our study villages while the occurrence of intersectoral collaboration between ex-officio VHSNC members from different line departments, non-governmental member, the gram panchayat and ordinary households has increased. Participants over the period of our study are found to develop an ability to interpret information in context and act appropriately to establish practices that improve intersectoral collaboration, for example between the health worker and the mother and child nutrition specialist, or in conjunction with the waterman and gram panchayat.  Ultimately, we have found that the development and maturity of a VHSNC is not something that can be mandated from outside by the imposition of structures but needs to be understood in terms of specific local situations, interventions and practices which can create resilience among communities in order to cope with chronic diseases and epidemics.

COVID-19: A Proposal for a Digital and Distributed Response System

Margunn Aanestad (University of Agder) proposes a health emergency response system that, with its digital and distributed natures, would allow quarantined and infected patients to stay at home as long as possible.

It is crucial to try to limit the spread of the virus through case detection, situation reporting and surveillance, as well as contact tracing. During emergencies, health authorities may experience a huge demand from the general public and from both suspected and confirmed victims which threatens to overload the health system. We see that well-resourced health system struggle to respond to the COVID19 epidemic and can only image the extreme demands on health systems with less resources.  

I here share a proposal for a response system that allows this large group of patients to be monitored without accessing hospitals or healthcare institutions. This digital and distributed response system allow quarantined and infected patients to stay at home as long as possible. Patients at home register symptom and report them through their mobile phones. This allows a form of triage (see the table below), where health personnel at a response centre responds to the incoming data. This could involve calling the patients with red alerts to assess if they need access to a doctor or hospital admission. This is a first version of a protocol that is being implemented in the region of Agder in Norway, i.e. in a well-resourced health system context. While it builds on the symptom descriptions published by the WHO (among others)[1] it is an initial version and may have to be adjusted[2].

In practice, the actual implementation of both the triage questions, threshold values and responses need to be decided on for each instance. An implementation in a developing country context would need to adjust to local conditions and resources. A web interface can work with smartphones, or the infrastructure should set up for structured SMS if the population does not generally have access to smart phones.

There may be other candidate protocols around, however, I am not aware of any. Most existing triage protocols for corona virus are made for emergency departments in well-resourced hospitals. This protocol, made for a western, affluent context is based on access to a thermometer; this may not be generally available, and a subjective assessment of no fever/fever might be an alternative. The crucial resource for putting such a system in place would be responder resources to monitor the incoming data and access to physical health care for those that require it. Healthcare staff will be difficult to mobilize in an over-stretched health system. There is the option of automate some of the job of prioritizing among reporting patients so that “red alert” patients are shown first. One might also think of solutions where non-healthcare staff might do some of the triage work and even advice patients. Access to healthcare resources for the most needy are going to be a challenge, but if implemented, such a digital, distributed triage system might alleviate the demand for service and increase the likelihood that the most needy will be able to access it.


[1] https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

[2] It is implemented using the COVID19-module on the OpenTeleHealth platform (oth.io) delivered by Siemens Healthineers.

HISP at University of Oslo releases DHIS2 package for tracking of COVID-19

The Health Information Systems Programme (HISP) is a sustainable and scalable research project enabling and supporting health information systems implementation in more than 100 developing countries.

As a large-scale longitudinal international action research programme coordinated from the University of Oslo (UiO), HISP has engaged in the development and implementation of the District Health Information System (DHIS2) software for more than two decades. DHIS2 is a generic open-source software system with data warehousing functionalities and customizable modules for integrated health data management. Ministries of Health and Non-Governmental Organizations (NGO) in more than 100 developing countries are using DHIS2 covering an estimated 2.28 billion people (see www.dhis2.org/inaction).

HISP is today a global network constituted of Independent HISP groups (like HISP South Africa, HISP India and HISP Uganda), Universities (like University of Dar es Salaam and Universidade Eduardo Mondlane), Ministries of Health, NGOs, global policy makers, global donors, researchers, students, social entrepreneurs, individual consultants, and more. Together, they play different, but complementary roles, and form an organically growing ecosystem around the DHIS2 software with new roles developing and shifting between the different actors.

HISP UiO which coordinates the development of DHIS2 is now also a professionalized software development organization. Other core actors in this global ecosystem around DHIS2 implementations are the HISP groups with established and sustainable local expertise in developing countries (Bangladesh, India, Malawi, Mozambique, Nigeria, Rwanda, South Africa, Sri Lanka, Tanzania, Uganda, Vietnam, West and Central Africa region, and Colombia). They support the implementation of DHIS2 in their countries and regions based on their domain knowledge, technical and implementation expertise and experience. Their efforts include training of users at different levels, software implementation and maintenance, integration with other systems and software development of extensions and apps. They also contribute by arranging regional DHIS2 academies and share knowledge with other entities through e.g. the DHIS2 annual conference.

DHIS2 & COVID-19

In the fight against the spread of COVID-19, the Health Information Systems Programme (HISP) at the University of Oslo is actively working with its global network of partners to provide open-source technological solutions to help track and contain transmission.

The DHIS2 software platform, developed at UiO, is used as a national Health Information Management System (HMIS) in 67 countries around the world. It offers the possibility of registering and tracking suspected and confirmed cases of COVID-19, as well as tools to rapidly analyze and present data for decision making.

HISP Sri Lanka was the first group in the UiO network to deploy DHIS2 for this purpose, creating a COVID-19 surveillance system on request from their Ministry of Health to monitor travelers from high-risk countries. They shared the details of their work online with the DHIS2 community so that others could easily apply the same approach. Since then, health authorities in Fiji, Palestine, Senegal and more have begun work on their own versions of this system.

Led by UiO, a global team has developed a standardized version of the DHIS2 surveillance program according to WHO guidelines that can be easily configured to a country’s unique needs. This work has drawn heavily on the example of Sri Lanka, as well as experience from HISP Vietnam with contact tracing of TB cases among migrants in the Mekong Delta, and foundational work on DHIS2 disease surveillance with WHO, GAVI, CDC and partners in Africa.

More information about the DHIS2 COVID-19 surveillance system–including an online interactive demo and a downloadable version of the software package–is now available on the DHIS2 website: www.dhis2.org/covid-19

###

For more information, contact:

Kristin Braa, Professor, University of Oslo, Informatics Department

Leader of HISP-UiO

kristin.braa@gmail.com

+4741630260

About HISP: https://www.mn.uio.no/ifi/english/research/networks/hisp/

About DHIS2: https://dhis2.org

COVID-19 EMERGENCY: ICT4D ENGAGEMENT

Health infrastructures in the developing world are likely to be heavily burdened by the ongoing health emergency posed by COVID-19. In the spirit of “making a better world” with information and communication technologies (ICTs), which characterises the ethos of ICT4D research, we have decided to leverage this blog as a platform to share expertise on ICT-based health emergency management at this critical time.

As a result, it has been decided that our IFIP 9.4 blog will temporarily suspend its ongoing research posts series, to fully focus on sharing best practices in ICT4D use for health emergency management. In this way, we hope to help colleagues and practitioners in developing countries accessing best practices and digitally-based solutions to face the crisis.

To do so we invite researchers, practitioners and community members which are confronting the ongoing crisis, or have expertise to offer from previous experiences, to submit their reflections to us (ifip94blog@gmail.com). We seek to publish blog posts (normally 600-800 words) on experiences of ICT usage towards the management of health emergencies, which can pertain to the COVID-19 crisis or refer to solutions that have relevance to it. By doing so, we seek to put ICT4D expertise at the service of combating the ongoing emergency, and support mutual learning in settings where infrastructural weaknesses add to the burden of the pandemic.

In these difficult historical times, the responsibility of “making a better world with ICTs” calls for action towards the development of useful practical insights. The decision to convert the blog into a platform for experience sharing constitutes a first step in responding this call.

The IFIP 9.4 Web Communications Team

The Last Mile Problem of Platforms: Implications for the Global South

Kari Koskinen (Aalto University) discusses existing gaps in access to digital platforms in the Global South, reflecting on viable routes to overcome participation divides and realise the development potential of platformisation.

Digitalization is often viewed as a major force in transforming societies both in the global North and South. One clear evidence of this transformation is the role of digital platforms in mediating more and more of the activities linked to our daily lives. For this very reason, digital platforms have also been subject to increasing amounts of research, and in the field of ICT4D, the research has for example taken the form of evaluating the implications of digital platforms to different developmental outcomes (see e.g. Koskinen et al 2019).

Digital platforms have been defined as having three characteristics:  they are technologically mediated, enable interaction between users and user groups and allow those user groups to perform certain actions. They have been seen as beneficial in the global South, among others, in facilitating banking services and secure payments (Morawczynski 2009), providing employment opportunities (Heeks 2017) and reducing transaction costs (Ssekibuule 2013)  What is noteworthy is that unlike many other types of applications and technological services, digital platforms seem to be able to provide tools and opportunities for the traditionally marginalized groups. In other words, by removing market inefficiencies and providing channels to offer one’s services, digital platforms at least in principle hold with them the possibility for the more marginalized to also benefit from them, instead of just the ones who are already doing well (Koskinen 2017).

However, as noted by many, all of the implications of digital platforms are not positive, and siding with Toyama (2011), digital platforms can function as amplifiers of existing conditions and structures rather than actually transforming those in any significant manner. In these cases, the key beneficiaries end up being the people who already find themselves in privileged positions. A number of factors can contribute to this, but one reason is linked simply to digital divide and accessibility issues, as the marginalized groups may not have the means or devices to access those platforms and reap the benefits they possibly offer.

Seen in this light, in addition to reducing the less desirable impacts of platforms, the focus shifts to enabling the marginalized to access these platforms. As the name implies, digital platforms are indeed digital and require a suitable device but often also connectivity from the user in order to access the platforms. For groups such as the poor in the global South, these barriers might be enough to stop them from doing so altogether. Similar to the last mile problem known in other areas, stating that the most expensive and difficult aspect of any network can be expanding it to its outmost edges, the question for the organizations and companies providing these platforms is how to gap that last mile of enabling platform participation, or in other words, how to reach the edges of these online spaces and, also, their offline continuums.              

Some solutions for bridging this gap have been proposed, such as providing devices such as smartphones to the targeted users or developing the platforms in a manner that it can also be accessed with basic phones or via other similar technologies. However, they all have their caveats, for example in larger scales device provision is unlikely to be viable, and on the other hand by resorting to more basic devices for access it is likely to come with the cost of lost functionalities. Regarding the latter, the question on how to reach people who are completely offline also remains. In accessing offline spaces, the solutions can also take non-technical forms, such as organizing the participation around a cooperative, or relying on technologies that do not require a connection, in which for example different offline devices and storage equipment like memory sticks could be used to expand the reach of the digital platform to unconnected areas and households, albeit with delay.

On the edges of platformisation: Kivukoni fish market, Dar-El-Salaam, May 2019

Even though subject to time factors like smartphone penetration and data costs, which are likely to change over time, as a short time span solution there is a need to have a better understanding on what it means to be offline and look for ways to bring in the offline as part of the digital economy, especially if it can be seen as benefiting from the otherwise marginalized groups. Overall, this might require us to broaden our view of what it means to be online or offline, which instead of a dichotomy could be seen more as a continuum. As an example, one may not possess a smartphone with data but might have connectivity of a different kind in the form of a basic or feature phone. Similarly, it can be asked if it is possible to be online with delay via the use of different kinds of storage devices yet without direct connection to a network.

Mapping the different options of being online has implications on how digital platforms in the global South are developed and to the value they can deliver also to the traditionally more marginalized. Theoretically understanding the possibilities and limitations of offline and online spaces in the global South is therefore important and it would also have practical implications. Among others, for a platform, be that from the public, private or third sector, users’ positions in the offline-online scale  leads likely to trade-offs between expanding the reach of the platform vs. inability to offer certain functionalities (for example in the case of basic phones vs. smartphones), and with that, to automatize operations. This again translates to more manual work, which can impact the scaling up of the platform, and paradoxically reduce the reach of the platform again. By understanding how to overcome the participation divides and how to reach for those offline in a sustainable manner, solutions can be found that provide the maximum reach while still allowing the provision of developmental benefits that these platforms can at least in principle deliver.

References:

Heeks, R. (2017) Decent Work and the Digital Gig Economy: A Developing Country Perspective on Employment Impacts and Standards in Online Outsourcing, Crowdwork, etc. (Development Informatics, Working Paper Series) (2017)

Kentaro T. (2011) Technology as amplifier in international development. In Proceedings of the 2011 iConference (iConference ’11). Association for Computing Machinery, New York, NY, USA, 75–82.

Koskinen, Kari (2017) When local routines meet global technology: a case study on the role of context in application development in Kampala. PhD thesis, London School of Economics and Political Science (United Kingdom).

Koskinen K., Bonina C., Eaton B. (2019) Digital Platforms in the Global South: Foundations and Research Agenda. In: Nielsen P., Kimaro H. (eds) Information and Communication Technologies for Development. Strengthening Southern-Driven Cooperation as a Catalyst for ICT4D. ICT4D 2019. IFIP Advances in Information and Communication Technology, vol 551. Springer, Cham

Morawczynski, O. (2009) Exploring the usage and impact of “transformational” mobile financial services: the case of M-PESA in Kenya, Journal of Eastern African Studies, 3:3, 509-525

Ssekibuule, R., Quinn, J.A., Leyton-Brown, K. (2013) A mobile market for agricultural trade in Uganda. In: Proceedings of the 4th Annual Symposium on Computing for Development, pp. 1–10. ACM, New York

ICT4D Work and Migration: Strengthening the Privacy Protection of Undocumented Migrants

Sara Vannini (Department of Communication, University of Washington) reflects on the research ethics involved in work with undocumented migrants, and illustrates five recommendations to strengthen privacy protection in this type of research.

As researchers in ICT4D, we often celebrate digitalization, digital presence and online voice as development successes. Often, we have looked at the way big data can foster socio-economic development in the Global South. We have advocated for the benefits of digital money exchanges, applauded the rapid diffusion of mobile phones and mobile connectivity, and generally promoted access and connectivity. Fewer times, we have considered the consequences of the digital traces we have helped creating, and how they relate to safety and ethics in our research (the work of Kleine and Dearden has been an important effort in this sense – see: https://ictdethics.wordpress.com/).

ICTs and the digitization of data do raise important concerns about data privacy and security. When working with non-dominant, underserved, or otherwise oppressed communities, concerns are amplified (see Eubanks, 2018; Marwick and Boyd, 2018). In the context of migration, they include governments categorizing, profiling, and monitoring migrants’ identities (see Arjana, 2015) – in a political moment when the growing number of socio-economic migrants, refugees, and forcibly displaced people around the world has been met with increased surveillance and datafication.

I have started to engage with topics of information and migration since 2015, in collaboration with my colleagues Ricardo Gomez (University of Washington Information School) and Bryce Newell (University of Oregon School of Journalism and Communication). We have been observing the work and information practices of small humanitarian organizations that help irregular migrants survive, live, and thrive in the United States. These organizations frequently do not have the resources or expertise to fully address the implications and challenges of collecting, storing, and using data about the populations they serve. The chances that their information practices were to exacerbate the threats that migrants are already facing are very high: in the U.S. undocumented migration context, data disclosure can signify detention and deportation. At the Southern border between U.S. and Mexico, it can also enhance people’s vulnerability to human traffickers, smugglers, drug cartels.

The current paradigm in which humanitarian actors are operating is insufficient for the challenges of the digital space: the principle to “do no harm” that guides humanitarian action is not reflected in the way they secure data (see also: Sandvik and Raymond, 2017) for three main reasons:

1) Humanitarian organizations’ informational practices present both technological and human-related risks, ranging from data breakages, hacks, and leaks, to negligence and lack of data-handling-related protocols.

2) Their current expectation of privacy self-management/informed consent by vulnerable populations is problematic. The concept is based on the ideal of a person who is (i) informed; (ii) able to make decisions in their best self-interest about giving or withholding consent to the collection, use, and disclosure of personal data, including short- and long-term consequences of such consent; (iii) in condition to freely choose whether to consent or not to their data disclosure without consequences.

3) There is a lack of robust, actionable, privacy-related guidelines specific to humanitarian information activities, particularly when applied to transnational, irregular migration.

Photo: Portion of the border wall dividing Arizona (US) and Sonora (Mexico) at Sasabe

The principle of “do no harm” that guides humanitarian action needs, then, to be reframed to guide humanitarian information activities in the digital space. Based on field observations and interviews at several U.S.-based humanitarian organizations, higher education institutions, and nonprofit organizations that provide support to undocumented migrants (see Gomez et al, 2020; Vannini et al., 2019a, 2019b), we have drafted five recommendations to strengthen the privacy protection offered to undocumented migrants and other communities that might be disenfranchised by systems of oppression (see: https://sites.uw.edu/rgomez/mind-the-five/):

1) Exercise prudence: collect as little personal information as possible, avoid collecting information when there is no identified and immediate use for it. Practice data minimalism.

2) Protect and secure personal information: develop strategies and expertise to protect digital data from both technical and human risks of disclosure.

3) Provide training about data privacy and security: staff and volunteers, even short-term ones, should be trained in securing data collection and management. Do not rely on staff members’ and volunteers’ previous expertise only. Develop expertise internal to your organization.

4) Share alike: collaborate with other similar organizations that share the same concerns and principles.

5) Practice non-discrimination: make sure you can serve even to those individuals that might decide not to consent and share their information, either digitally or at all.

These recommendations are not only directed to humanitarian organizations. As researchers in ICT4D, we are continually dealing with data from non-dominant, underserved, oppressed communities. Research has shown that ICTs tends to perpetuate and, in some cases, amplify social structures of oppression. Furthermore, since the Cambridge Analytica scandal, it appears clear that digital data can be aggregated and combined in unexpected and unprecedented ways. As ICT4D researchers, we need to actively ensure that our best intentions will not expose people to greater risks, in the present and in the future.

Author Biography: Sara Vannini is a Lecturer at the University of Washington, Department of Communication. She has been working on this research as part of a team with Ricardo Gomez (Associate Professor at University of Washington Information School) and Bryce Newell (Assistant Professor at University of Oregon, School of Journalism and Communication).


Ajana, B. (2015). Augmented borders: Big data and the ethics of immigration control. Journal of Information, Communication and Ethics in Society, 13(1), 55–78. https://doi.org/10.1108/JICES-01-2014-0005

Eubanks, V. 2018. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. St. Martin’s Press.

Gomez, R., Newell, B. C., Vannini, S. (2020). Empathic Humanitarianism: Understanding the motivations behind humanitarian work with migrants at the US-Mexico border. Journal on Migration and Human Security.  https://doi.org/10.1177/2331502419900764

Marwick, A.E. and Boyd, D. 2018. Privacy at the Margins| Understanding Privacy at the Margins—Introduction. International Journal of Communication. 12, 0 (2018), 9.

 Sandvik, K. B., & Raymond, N. A. (2017). Beyond the protective effect: Towards a theory of harm for information communication technologies in mass atrocity response. Genocide Studies and Prevention: An International Journal, 11(1), 9–24. https://doi.org/10.5038/1911-9933.11.1.1454

Vannini, S., Gomez, R., Lopez, D., Mora, S., Morrison, C., Tanner, J., Youkhana, L., Vergara, G., Moreno Tafurt, M. (2019). Humanitarian Organizations Information Practices: procedures and privacy concerns for serving the Undocumented. The Electronic Journal of Information Systems in Developing Countries (EJISDC).

Vannini, S., Gomez, R., Newell, B. C. (2019). Mind the Five: Guidelines for Data Privacy and Security in Humanitarian Work with Irregular Migrants and Vulnerable Populations. Journal of the Association for Information Science and Technology (JASIST). https://doi.org/10.1002/asi.24317

From our new IFIP WG 9.4 Secretary

It is my huge honour and pleasure to start my time in office as Secretary of IFIP WG 9.4, at a historical juncture in which the social implications of computers – and, at large, digital technologies and innovations – for developing countries deserve great attention in and beyond academia.

IFIP WG 9.4 was established in 1989 with the leading goal to collect, exchange and disseminate experiences of ICT implementation in developing countries. Under this aegis, three more goals were set to develop a consciousness amongst professionals, policymakers and public on social implications of ICT in developing nations; develop criteria, theory, methods and guidelines for design and implementation of culturally adapted information systems; and to create a greater interest in professionals from industrialised countries to focus on issues of special relevance to developing nations. As we reflect on the WG goals today, a few considerations are in order.

First, the notion of “dissemination” of experiences of ICT in developing countries is radically rethought in work conducted at WG 9.4 today. The concept of “dissemination” – elaborated in an earlier stage of our history – leaves room to a focus on generation of innovations in the Global South, their effects on vulnerable communities, and their potential in fostering “development” under multiple meanings of the term. The Working Group’s focus on indigenous theory, reflected in special issues and in a dedicated track at our latest conference in Dar-El-Salaam, Tanzania, flows directly from the importance of localised understandings of the studied phenomena, framed under contextually developed lenses that enrich our knowledge of the subject matter. The latest WG 9.4 meeting, programmatically centred on “strengthening Southern-driven cooperation as a catalyst for ICT4D“, is paradigmatic of an orientation that places mutual learning and collaboration across countries and regions at the core of our activities.

Second, the development of a consciousness beyond the academic world – amongst “professionals, policymakers and public” as our principles state – acquires a whole new importance at this time, a historical phase when digitality intertwines with the very essence of development policies worldwide. The datafication of governance, digital development policies, new routes to e-commerce, digital work and socially motivated outsourcing, the new trend of digital platforms for socio-economic development, are all topics that research from our Working Group comprehends, and that reveal the mutual shaping of development trajectories and digitality. Against this backdrop, our resolution of involvement of professionals and policymakers – as well as public, civic and non-governmental organisations – acquires a new importance altogether, positioning WG 9.4 as an active citizen in the digital development landscape. Our conference meetings, which see close collaboration of academics, professionals, the policy world and the civil society, are a important embodiment of this principle.

Third, even the development of criteria, theory, methods and guidelines for the design of “culturally adapted” information systems acquires a new light. The abovementioned focus on indigenous theory, the WG’s attention for locally generated innovations and southern-driven approaches to “development” – an underpinning shift to strong participation in development studies terms, all give a stronger meaning to the vision of “cultural adaptation”, resulting in attention for locally-grounded generation of innovations rather than sheer adaptation of pre-existing ones. Our active presence across the globe, the analytical and critical focus of our reflections, a vision of criticality that takes the multiple perspectives of the WG community as its starting point, all characterise this attention to the local as a distinctive feature of our work.

Once again, it is my utmost honour and pleasure to serve as Secretary of WG 9.4. as we embody these important principles in our work. Can’t imagine a better community to do it all with!

Silvia Masiero

Positioning the University in the Global South – ICT4D Research

By Caroline Khene

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I have been a researcher in the field of ICT4D for the past 14 years in South Africa. I chose to focus in this particular field, because I really believed that through knowledge and applied research, we can address at least some of the many challenges we are confronted with in our context. When I first became an academic, right after my PhD, it was surprising to observe how removed our curriculum and research are from engaging with the realities of our context. Our field was extremely, and still is (although improved a bit) business driven. The concept on ICT4D was not given the true attention naturally needed in our context, but was seen as a side-lined research community engagement (“charity”) activity unaligned with the conventional focus of our curriculum and research. Despite these views and challenges, ICT4D began to emerge as a significant research focus area among many of my South African colleagues, and given the kind of students and contexts we practice in, this is seen as a vantage point to truly develop the meaning of African Theory in Information Systems.

The ICT4D field is currently dominated by the global north, which is most likely the case given the resources available and key networks. I quite enjoyed reading the editors piece of the recent special issue of JAIS (Journal of the Association of Information Systems) – ICT4D: The next grand challenge for information systems. I can certainly agree with most of the aspects highlighted in that paper, as the proposal to create that explicit link between mainstream IS and ICT4D is so vital for IS academic departments in developing countries, who still rely on curricula guidelines predominantly developed by stakeholders originating from outside our contexts. What the editors indicate in this particular special issue, is that the selected papers for the journal issue do not necessarily originate from academics from universities in the global South

“Consequently, we have the stark reality that researchers based in institutions located in developing countries make limited contributions to both the mainstream and ICT4D disciplines. Tellingly, none of the authors of the papers in this special issue come from institutions in developing countries.”

The editors indicate that the special issue does not focus on understanding why this is the case, but have flagged this as an issue. Nonetheless, what is paramount is that they argue that:

“Arguably, insights developed by researchers who are situated in a context are richer than those developed by researchers located at a distance (both geographically and culturally).”

Considering these comments, this really calls for a need to investigate why this is the case for researchers located in institutions in the global south, and what challenges exist for exclusion. The editors mention that these relate to “limited access to literature and communities of practice and even basic training in information systems”. I believe this is certainly the case in many African and developing countries which need support and better collaborations that empower their voice as authors in academic papers, rather that passive participants. Furthermore, coming from a South African university, the challenges highlighted are hardly the case in key universities, where access to literature databases and libraries, communities of practices, and industry standard training in information systems is available. Nonetheless, we still do welcome the key international collaborations in developing research among our students and peers; but also desire the acknowledgement that collaborations are not a one-way activity, but two-way activities where both universities from the global north, and the global south can actually learn from each other. For example, the Erasmus programme in Europe has allowed some academics to visit each other’s universities, to share perspectives and teach at each other’s institutions. In 2016, the University of Limerick sent one of its academics from the Kemmy Business School to teach on project management in international development projects. Students from South Africa also shared their perspectives with the academic, which became a mutual insightful exercise for both parties. Subsequently, an academic from South Africa visited the University of Limerick to lecture students on an ICT4D e-governance perspective on project management – also resulting in insightful shared perspectives. This Erasmus engagement resulted in the publication of a paper between the two academics, sharing their knowledge and experience both theoretically (rigor) and in practice (relevance). Furthermore, one of the African students who was doing a Masters degree in Project Management at the University of Limerick at that time, informed his NGO about the ICT4D e-governance initiative in South Africa, leading to a recent key partnership to implement a similar initiative using applied research.

The other aspect I would like to touch on is “the way” of doing research. As I indicated earlier, IS has been dominated by a positivist approach. In contrast, the ICT4D field is mainly an intepretivist case study dominated field – now with critical realism gaining momentum. Research comes in different forms based on our chosen philosophical approach or worldviews, i.e.: Positivist, interpretivist, critical realist, pragmatist, emancipatory, etc. In the sphere of ICT4D in the global north, these have been used in different studies, producing quite interesting and relevant research. However, where we are in our progress towards development, we do not wish to simply create knowledge about knowledge, but to address the complex problems in our contexts. Why this is of value to us, is because as ICT4D researchers, we directly experience and live in these circumstances, which ignite a desire to change things. Examples include infringement on civic rights of marginalised communities, corruption, lack of access to basic services (water, sanitation, electricity), dealing with the challenges refugees experience, closing down of remote schools due to lack of access to textbooks and educational content, etc. ICT is not a panacea for addressing these challenges, but have been seen to play a key role in addressing these issues. These issues remain complex from a social, political, economic, and ethical standpoint, which require researchers in these contexts to invest in critical, pragmatist, and emancipatory approaches to research to unravel these complexities. An academic or researcher in a global north context is positioned to invest in this approach and provide insight from experiences. Furthermore, innovation from this research exercise does not exist only in the development of an ICT4D artefact or recommendations, but in the ability to guide implementation and sustain these artefacts and recommendations. Given most study participants are already faced with resource constraints and other social-cultural constraints, the university needs to stand out as a service model to society, to address the lack of skill or insight to drive development. The university does not hold all the resources or political power to address challenges, but it is certainly positioned as a bridge to fill the gap of a lack of knowledge and insight in addressing a challenge in a particular way.

The outputs of the research process applied in this way tend to originate from the context more than typical IS theory. In my experience reviewing IS Journal and conference (locally and internationally), and examining thesis, it has been quite down heartening to have to see yet another Technology Acceptance Model (TAM) interpretation, or heavy reliance on Sen’s Capability approach. Don’t get me wrong – these theories have been quite powerful and insightful, however, at times they are insufficient to drive the interpretations of our contexts. To get a paper published in a mainstream IS journal, one is required to build their argument from popular theory – however, what does one do, if the theory does not explain the context. Are we forced to reverse engineer, and squeeze our empirical experiences into a particular theory just to get published? Or should we rather explore theory from a vast variety of disciplines (transdisciplinarity) to introduce new understanding of IS in developing countries. I choose the latter. Theory is important, because it shapes our understanding of phenomena from different angles. However, publishers, editors, academics should begin to recognise the emerging change in methodology and approach, when working in our unique contexts – this calls for the development and recognition of sensitised approaches to research in African and developing countries.

Biography: Caroline Khene is an Associate Professor of Information Systems at Rhodes University, South Africa. She is also Co-Director of the MobiSAM (Mobile Social Accountability Monitoring) project, a digital citizen engagement initiative. Her research areas of interest are in ICT4D and E-governance, with a focus on project management, evaluation, and strategy formulation. She also conducts research on higher education development in developing countries – with an aim to build capacity and sensitivity to those unique contexts.