This piece is a part of a collection of research that demonstrates how data-intensive systems that are built to deliver reproductive and maternal healthcare are not adequately prioritising equality and privacy.
What are they?
Short Message Services (SMS) are being used in mobile health (MHealth) initiatives which aim to deliver crucial information to expecting and new mothers. These initiatives are being implemented in developing countries experiencing a large percentage of maternal and infant mortality and aim to increase uptake in postnatal care services as well as to increase mothers’ knowledge of pregnancy and postnatal care. These initiatives work by sending SMS messages which can contain a broad range of information, including upcoming appointments with doctors, as well as advice about infant vaccinations, health of the baby, and more. Our research has focused on three of these initiatives, being Mama Bangladesh, SMS Maama in Uganda and Wired Mothers in Zanzibar.
What purpose do they serve?
The primary aim of such initiatives is to deliver vital health information to new and expectant mothers and to increase the uptake in postnatal health services.
The aim of Mhealth services is to address ongoing difficulties in certain countries in the healthcare delivery system as result of a variety of challenges and obstacles faced by both patients and healthcare providers as well as contexts of remote care provision and poor infrastructure amongst others. This includes issues such as clients forgetting appointments, low patient follow-up and engagement, as well as low levels of awareness relating to pregnancy and postnatal care. MHealth SMS projects aim to improve patient tracking and information exchange. They also enable data gathering, record keeping and communications with new and expectant mothers.
Who is behind it?
The primary funder or driver for such system tends to vary from one initiative to another. Some initiatives involve a public-private collaboration, which may include governmental health organisations, international development and aid agencies including UN agencies, and private companies. Other initiatives may be student- led and collaborate with universities to further their research. However, as a general theme there is a collaboration of public and private actors involved in the running of the initiatives.
Types of data collected?
Our desk-based research into a variety of initiatives has revealed that generally SMS Mhealth initiatives do not provide a lot of information surrounding how the data is being collected, processed, stored and shared with third parties. This is an area for concern.
Numerous initiatives, such as Mama Bangladesh and SMS Maama in Uganda did not appear to publicly outline precisely how the data was being processed and what information was shared with partner organisations and other third parties. There’s also a lack of information about what safeguards are used to ensure that health data is kept secure, with some initiatives reporting that some of the registration data could have been lost during the registration process.
Considering that the data that is being collected is likely to be sensitive health data, as it relates to women’s pregnancy, birth, health of infant and may also include menstrual data, SMS initiatives should provide far more transparency about what precise data is collected, how it is used, and with whom it is shared.
What are the concerns?
A primary concern that our research illustrates is that there seems to be limited transparency about numerous aspects of SMS health services, and how the data is being processed, by whom and in accordance to what safeguards.
Lack of transparency surrounding what data is collected
There is limited information provided publicly and to users about what data is collected when SMS initiatives are being used. Out of the three initiatives PI researched, SMS Maama in Uganda and Wired Mothers in Zanzibar provided limited information about what health questions participants were specifically asked about when interacting with the service.
One exception to this is Mama Bangladesh, which outlined in the following report, details about the questions women were asked and the data that was recorded about them upon registration.
There must be more transparency of SMS initiatives surrounding what data is collected from participants and what questions they are being asked both before and after registration.
Lack of transparency surrounding how the data is stored and processed
In addition to a general lack of transparency about what data is collected from participants, we have also observed that it is also unclear how the sensitive health data about women and their pregnancies or their infants is being stored and how it is being used. This is concerning because it then becomes difficult to ascertain to what extent the data is being treated properly, fairly and lawfully, in line with relevant data protection legislation and with respect to data subjects’ rights. Based on our desk-based research of existing literature, the issues associated with data protection and security of data have been left largely unexplored.
Lack of transparency surrounding with whom this data might be shared
SMS initiatives we have researched state which partners are involved in their projects, and these partners vary from governmental organisations, international development and aid agencies including UN agencies, to pharmaceutical companies, international companies, marketing companies as well as local businesses.
However, the SMS initiatives researched for this report do not appear to explain to what extent the data about women’s health data, their names, contact details, and other information collected by the systems, was being shared with these partnering organisations.
As a result, more transparency should be provided, as data subjects must be aware of with whom their data is being shared and how it is being shared. For example, the initiatives researched by PI did not appear to provide data sharing agreements which would have detailed this information.
Lack of transparency surrounding what safeguards were implemented
There also appears to be a general lack of information provided across the SMS initiatives we have researched surrounding what safeguards have been implemented to ensure that the participants’ data has been kept secure.
We have not been able to find information related to projects’ privacy policies, anonymisation of participants, how long the data has been kept, or whether it has been deleted after the end of the a user’s relationship with a given SMS initiative.
Due to a lack of information surrounding safeguards, it is difficult to ascertain what mitigation strategies are implemented to prevent participant’s’ health data from being misused or altered in any way during the user engagement with a SMS initiative, and to prevent unauthorised access.
Issues surrounding gathering of explicit, freely given and informed consent
It is also unclear how the SMS initiatives we researched obtained meaningful consent from users. Considering that SMS initiatives can relate to women’s health, pregnancy, the health of their infants and potentially sexual health, it is crucial that participant’s consent was explicitly given. Even when it appeared that consent was obtained, issues nonetheless arose.
For example, this a report about an initiative called Mama Bangladesh, outlines that women could register themselves to the system, could be registered by agent from a call centre, or could be registered by community health workers. Concerns arose in the latter scenario, with report stating that some community health workers did not visit the women prior to enrolling them in registration forms. According to the report, there were concerns about the data entered on the registration forms could have been fabricated by the workers.
This raises significant problems surrounding the consent gathering process and highlights that not all participants could have provided their explicit and informed consent to joining the SMS initiative.
Considering that other SMS initiatives we researched appear not to have provided clear information about the process of subscribing women and obtaining their consent, this raises questions surrounding how well-informed participants were before signing up or being signed up to the initiatives.
Concerns surrounding partnerships and advertisers
As mentioned above, some SMS initiatives provided information about the partners with which they were working. These ranged from governmental institutions to telephone companies, pharmaceutical companies, and even local businesses such as local stores, vitamin or nutritional goods, and other pregnancy or child care related businesses.
But what remains unknown is what these partnership agreements functionally meant. Was participants’ data being shared with these partners? Were the partners in some way benefiting financially from the partnerships? More transparency is needed to understand what is going on. The regulation of public-private partnership is one that PI and our partners have been demanding for many years.
Selected examples of Short Message Service (SMS)
What is it?
MAMA Bangladesh is the Bangladesh secretariat of the Mobile Alliance for Maternal Action (MAMA), a global alliance for improving maternal and child health through mobile technology. Apart from Bangladesh, similar MAMA initiatives were also previously launched in South Africa, India and Nigeria.
The MAMA Bangladesh SMS initiative operated between 2011-2017 and its mission was to deliver vital health information to new and expectant mothers. MAMA Bangladesh was a public-private collaborative initiative. The Ministry of Health and Family Welfare (MoHFW) and the Aaccess to Information Program at Prime Minister’s Office were the official government partners of MAMA Bangladesh.
MAMA Bangladesh leveraged wide-ranging partnerships with government agencies, private sector entities and NGOs. MAMA Bangladesh has built a partnership between D.Net and a number of institutions in Bangladesh for reaching out to families across the country, particularly in rural areas and urban slums.
What service did they provide?
The information that was provided by MAMA Bangladesh SMS service included the following:
- Care during pregnancy and care for the baby
- Names and schedules of vaccines
- Nutrition for mother and baby
- Physical, mental and social development
- Danger signs before, during and after delivery
- Birth spacing and control
- Breast feeding
- Safe delivery
- Connecting to healthcare facilities
- Removing taboo and beliefs
Who is involved?
The government outreach partners were:
- The Bangladeshi Access to Information Program (Union Information and Services Centre)
- The Bangladeshi Community Clinic Project
- The Bangladeshi Directorate General of Health Services (DGHS)
- The Bangladeshi Directorate General of Family Planning (DGFP)
The non-government outreach partners were:
- BRAC Bangladesh (BRAC Health)
- The Bangladeshi Fair Price International (Pvt.) Limited (Infolady Social Entrepreneurship Program)
- The Bangladeshi MCHIP (MaMoni Program)
- The Bangladeshi Smiling Sun Franchise Program (SSFP)
- The Bangladeshi Social Marketing Company (SMC)
The project was a collaboration between the USAID and Johnson & Johnson, with support from the United Nations Foundation, mHealth Alliance and BabyCenter LLC.
Other than service charges from subscribers, MAMA Bangladesh relied on multiple sources of support for ensuring financial sustainability. It would appear that the private sector is the a major contributor to MAMA Bangladesh. The corporate partners were:
- Beximco Pharmaceuticals Limited
- Multimode Group
One of the key issues with MAMA Bangladesh was the lack of information provided surrounding how the data was being processed, and with whom it was shared. The Aponjon/MAMA Bangladesh report suggests that data was gathered via subscription campaigns, when women subscribed to the SMS services.
According to the report, women could subscribe by either talking to a call centre agent or following a voice-recorded menu to submit initial registration data and subscribe to the service. Women could also be registered by outreach partner healthcare workers.
The self-registration services asked questions about whether the woman was pregnant, her pregnancy due date, if the baby had already been born, the delivery information, as well as contact details of the husband/decision- making relative/head of the household. According to the Aponjon/MAMA Bangladesh report, women were also asked about their socio-economic status, level of education, identity and occupation of the husband/decision- making relative/head of the household, and total family income per month. Women were also asked to indicate their last menstrual period or the date of birth of their newborn child.
According to the report, the SMS MAMA initiative was implemented in Bangladesh by Dnet, which is a Bangladeshi not-for-profit social enterprise. The data collected from participants was entered into registration databases manged by SSD-Tech (Systems Solutions and Development Technologies), which is a software development company in Bangladesh. As mentioned before, the report did not outline who would have access to the database, what safeguards were being implemented to ensure that the data could not be misused, and which partnership or other organisations the data was being shared with.
SMS Maama in Uganda
What is it?
SMS Maama is currently being re-launched as SMS Maama Covid-19, which started in 2021 during the coronavirus pandemic. The aim of this project is to improve access to maternal health services in the era of Covid-19 pandemic. It aims to increase maternal health knowledge in the areas of birth preparedness, pregnancy and birth complications. It also seeks to provide knowledge of Covid-19 symptoms to pregnant women, the virus’ transmission, diagnosis, and treatment in a time of social distancing. It is a new project and there appears to be limited information provided about it. As a result, this report will discuss both the 2016 SMS Maama Project and the 2021 project.
SMS Maama Uganda 2016 project
What service do they provide?
SMS Maama Uganda 2016 provided pregnant women with information via SMS and connected participating women with midwives. The participants answered interactive health screening questions when being enrolled in the system, and received informational texts each week. A participant will also receive appointment reminder texts.
According to SMS Maama’s report, participants also received advertisement messages from local Ugandan businesses. The advertisement messages apparently provided revenue to fund SMS Maama’s expenses and ensure sustainability. Any financial relationship between SMS Maama and local businesses would raise serious questions about how pregnant women were asked to consent to their data being potentially shared in such a relationship. It could be the case that the names, phone numbers, and pregnancy status of women were shared with businesses, allowing businesses to directly contact and advertise to women. Such sharing of private health data would raise questions about how the project obtained meaningful consent and made women aware of such data sharing with advertisers.
Screening questions were received on a bi-weekly basis and apparently identified at-risk women to midwives for follow-up and also let women know they should make time to visit the clinic.
According to SMS Maama’s report, each time a woman responded to one of these questions she receives 1000 UGX (~$0.33 USD) to her mobile money account. This incentive encourages active participation and helped to pay for any family or pregnancy-related needs. However the inventive could also encourage women to keep sharing their personal information, making complete transparency around how the data is shared and processed even more crucial.
SMS Maama utilised cloud technology through Twilio, an SMS gateway system with API (application programming interface) capabilities for sending programmed Short Message System (SMS) messages. According to the SMS Maama report, Twilio sent pre-programmed weekly pregnancy-related informational messages and bi-weekly interactive yes/no symptomatic questions to participants. These informational texts and questions were relevant to a mother’s estimated gestational age and were used to provide to information to women about pregnancy, birth and the postpartum period. Women also received weekly advertisement texts providing information from local businesses which were tailored to the defined demographic. According to the SMS Maama report, businesses paid to access the customer base.
According to the SMS Maama report, the informational text messages were developed through a partnership with Mobile Alliance for Maternal Action (MAMA). MAMA, an established health promotion messaging program started in 2011 by former U.S. Secretary of State Hillary Clinton, aims to improve maternal health by providing text messages to vulnerable mothers around the world.
MAMA funding comes from the United States Agency for International Development (USAID), Johnson & Johnson, the mHealth Alliance, the United Nations Foundation, and BabyCenter.
There is limited publicly available information on the 2016 SMS Maama Uganda initiative and how that data received from participants was processed and with whom it was shared. In addition, it is difficult to understand what safeguards were implemented for the sensitive data about health and pregnancy obtained from participants. It is also unclear whether there were any privacy notices and how expressed consent was sought.
Further, the entire list of partners and advertisers was not provided. However, the involvement of local businesses advertisement messages raises red flags. It is not clear what data was shared with the businesses, if meaningful consent was obtained, if and how that data continues to be used to target people who participated in the programme, and more. It is also unclear what information exactly was shared with the advertisers, whether it was just women’s phone numbers or other details such as their name and pregnancy- related information. Also, it was not clear how these companies used the information they accessed including for commercial interests amongst other purposes.
In another piece of PI research, we showed the harms that can arise when people are unaware that their personal health information is being shared with advertisers.
SMS Maama Covid-19 project
What service do they provide?
The SMS Maama Covid-19 project launched in September 2021 and is estimated to end in February 2022. Its aim is similar to the 2016 project in that it seeks to increase maternal health knowledge in the areas of birth preparedness, pregnancy and birth complications. In addition, it also seeks to provide knowledge of COVID-19 symptoms, transmission, diagnosis, and treatment to pregnant women. Finally, it also aims to evaluate the ability of an mHealth (mobile health) platform to provide a feasible way of sharing information in a time of restricted movement.
The study is run by University of Minnesota (US) and Makere University, Kampala, Uganda. All SMS text messages will be transmitted through a local organization known as The Medical Concierge Group (TMCG) via an electronic system that allows for bulk messaging. TMCG also staffs a 24-hour call line for those using TMCG services to call in for medical related questions. This call line is staffed by doctors and nurses. SMS Maama participants randomized to the interventional group will be able to access this call line free of charge as part of their enrolment in SMS Maama.
There seems to be limited further information provided about any other partners or organisations that are involved in this particular study.
There is limited publicly available information about what data is being collected, how it is being stored and processed, and with whom it is being shared. There is also a lack of information available about what safeguards are implemented to ensure that the potentially highly sensitive information about health and pregnancy is secure.
Further we have not been able to find information about the partners and organisations that the SMS Maama Covid 19 project currently involves. This raises further questions about whether it will also entail an advertising component similar to the previous iteration of the project.
Wired Mothers in Zanzibar
What service do they provide?
The aim of Wired Mothers, which ran in 2009-2010, was to link women to healthcare facilities during the vulnerable period before, during, and after childbirth. It consisted of two components: an automated short messaging service system with one-way messaging, and an emergency call system to allow direct two-way communication between “wired” pregnant women and their health-care providers.
Wired Mothers provided SMS reminders encouraging women to attend routine antenatal care appointments, use skilled birth attendants and access postnatal care. During the first antenatal care visit, health workers collected basic information from patients, such as gestational age and mobile phone number, and entered it into the web-based system. Customised software automatically sent text messages to participants throughout their pregnancy and until six weeks after delivery. All participating women provided informed consent either by signature or fingerprint.
Wired Mothers is an integrated part of the national Reproductive and Child Health Programme in Zanzibar. The software is integrated into the existing health management information system (HMIS), and the HMIS unit is responsible for maintaining it. The Reproductive and Child Health unit collaborates with the District Health Management Teams (DHMTs) to implement Wired Mothers in their respective districts.
A central strategy of the national scale-up is to ensure sustainability through the integration of Wired Mothers into the national health system and through a public–private partnership with Zantel. Zantel is a telecommunications service in Tanzania. Technical support was provided by the University of Copenhagen and disseminated in peer-reviewed journals.
Wired Mothers was awarded a grant to scale up the SMS programme in Zanzibar by the United Nations Innovation Working Group’s (IWG’s) catalytic grant competition for maternal, newborn and child mobile health (mHealth), managed by the United Nations Foundation. Through the United Nations Innovation Working Group, Wired Mothers received financial assistance from the World Health Organization’s Department of Reproductive Health and Research.
The Wired Mothers initiative provided some information about what basic information was gathered from women (as gestational age and mobile phone number) and our research has indicated that consent was sought from women. Another welcome aspect of the study was that women who didn’t have access to a mobile phone were provided with the vouchers to purchase one, which would increase their control of the information that was provided via SMS instead of having to rely on their neighbours and/or husbands to relate the relevant information to them.
However, the information that was publicly available on this initiative was nonetheless limited and questions still remain. For example, there is a lack of information provided surrounding what safeguards were deployed to ensure that the sensitive health information was kept secure, how that data was processed, and how much of that data was shared with partners and governmental agencies.