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The exponential scale and pace of real-time data generated from mobile phones present opportunities for new insights and challenges across multiple sectors, including health care delivery and public health research. However, little attention has been given to the new ethical, social, and legal concerns related to using these mobile technologies and the data they generate in Africa.
The objective of this scoping review was to explore the ethical and related concerns that arise from the use of data from call detail records and mobile technology interventions for public health in the context of East Africa.
We searched the PubMed database for published studies describing ethical challenges while using mobile technologies and related data in public health research between 2000 and 2020. A predefined search strategy was used as inclusion criteria with search terms such as “East Africa,” “mHealth,” “mobile phone data,” “public health,” “ethics,” or “privacy.” We screened studies using prespecified eligibility criteria through a two-stage process by two independent reviewers. Studies were included if they were (1) related to mobile technology use and health, (2) published in English from 2000 to 2020, (3) available in full text, and (4) conducted in the East African region. We excluded articles that (1) were conference proceedings, (2) studies presenting an abstract only, (3) systematic and literature reviews, (4) research protocols, and (5) reports of mobile technology in animal subjects. We followed the five stages of a published framework for scoping reviews recommended by Arksey and O’Malley. Data extracted included title, publication year, target population, geographic region, setting, and relevance to mobile health (mHealth) and ethics. Additionally, we used the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews checklist to guide the presentation of this scoping review. The rationale for focusing on the five countries in East Africa was their geographic proximity, which lends itself to similarities in technology infrastructure development.
Of the 94 studies identified from PubMed, 33 met the review inclusion criteria for the final scoping review. The 33 articles retained in the final scoping review represent studies conducted in three out of five East African countries: 14 (42%) from Uganda, 13 (39%) from Kenya, and 5 (16%) from Tanzania. Three main categories of concerns related to the use of mHealth technologies and mobile phone data can be conceptualized as (1) ethical issues (adequate informed consent, privacy and confidentiality, data security and protection), (2) sociocultural issues, and (3) regulatory/legal issues.
This scoping review identified major cross-cutting ethical, regulatory, and sociocultural concerns related to using data from mobile technologies in the East African region. A comprehensive framework that accounts for the critical concerns raised would be valuable for guiding the safe use of mobile technology data for public health research purposes.
The exponential scale and pace of real-time data generated from mobile phones present new opportunities and challenges across multiple sectors, including health care delivery and public health [
In 2020, the National Institutes of Health (NIH) announced a grand opportunity for health research for new funding, titled “Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa).” The goal is to spur new health discoveries and catalyze innovation in health care, public health, and health research in Africa through data science [
The use of mobile phone call detail records (CDRs), which are time-stamped activity logs that are also known as billable events, is a relatively new concept in health research [
Our ongoing NIH-funded Mapping Tuberculosis Transmission Study (MATTS) in Kampala, Uganda, motivated this scoping review. MATTS takes a unique approach that utilizes individual-level CDRs combined with epidemiologic surveys and molecular data to map potential tuberculosis transmission “hot spots.” During the initiation of the study, members of the research team from the University of Georgia and Makerere University met with key stakeholders representing the public and private sectors in Uganda. The private sector players were telecommunication companies, and the public players were government agencies or regulatory entities. The goal of the meetings was to learn about existing ethical standards and policy guidelines that apply to utilizing CDRs and other data from mobile technologies for health research. The meetings led to several questions about data access, sharing, transfer, storage, security, privacy, confidentiality, legal, regulatory, and social concerns. In the end, our team surmised that the government and telecommunication entities had existing policies and procedures on personal data that did not necessarily accommodate the utilization of mobile data such as CDRs for health research. Therefore, our research serves as a logical step to generate evidence that is critical for informing the development of policy frameworks that will facilitate better access to mobile data for public health research.
In utilizing CDRs, there are potential points of ethical breaches as personal information flows from a user’s mobile phone to a database for health research purposes. For example, when a user activates a connection to mobile phone networks by calling or texting, “event-driven” personal data are generated in real time and stored as CDRs, whereas “network-driven” data are generated when the cell phone is not in active use (see
We situated this scoping review in the East African region because of the cross-cutting similarities in sociocultural context, the landscape and stage of mobile technology infrastructure development, and the likelihood of future unified regulatory policies given shared economic interests. Scoping reviews are useful for examining emerging evidence when it is still unclear what other, more specific, questions can be addressed by a more precise systematic review [
Our review findings are used to inform an ongoing primary study to explore ethical, legal, sociocultural, and regulatory concerns from the perspective of key stakeholders in the public and private sectors in Uganda. We expect that this work will further inform the development of comprehensive guidelines relevant to mHealth and public health research in the East African region.
We followed five of the six stages of the framework for scoping reviews proposed by Arksey and O’Malley [
Privacy of health information refers to an individual’s right to control the acquisition, uses, or disclosures of his or her identifiable health data for others [
The primary research question was:
A systematic search of the literature was performed on November 18, 2020, in the PubMed database using the search terms “mobile,” “ethics,” and “East Africa.” The detailed search strategy and terms used are provided in
(“Digital Health” [Title/Abstract] OR “Telemedicine” [MeSH (Medical Subject Heading)] OR “Cell Phone” [MeSH] OR “Smartphone” [MeSH] OR “mHealth” [Title/Abstract] OR “telemedicine” [Title/Abstract] OR “remote monitoring” [Title/Abstract] OR “mobile technology” [Title/Abstract] OR “mobile health” [Title/Abstract] OR “video observed therapy” [Title/Abstract] OR “video observed treatment” [Title/Abstract] OR “video directly observed treatment” [Title/Abstract] OR “video directly observed therapy” [Title/Abstract] OR “Call Detail Records” [Title/Abstract] OR “cell phone” [Title/Abstract] OR “cell phone” [Title/Abstract] OR “mobile phones” [Title/Abstract] OR “smartphone” [Title/Abstract] OR “cellphone data” [Title/Abstract] OR “cell phone data” [Title/Abstract] OR “data privacy” [Title/Abstract] OR “cell phone/ethics” [MeSH] OR “Cell Phone/legislation and jurisprudence” [MeSH] OR “Cell Phone Use/legislation and jurisprudence”[Mesh] OR “Cell Phone Use/therapeutic use”[Mesh])
Retrieved studies reporting on mobile technology and health in the East African region were included for further review. Two independent reviewers for each article applied the inclusion and exclusion criteria, with an additional author serving as the tiebreaker in the event of uncertainty regarding whether an article met the inclusion or exclusion criteria. Studies were included if they were (1) related to mobile technology and health, (2) published in English from 2000 to 2020, (3) available in full text, and (4) conducted in the East African region. We excluded articles that (1) were conference proceedings, (2) without full text or presenting an abstract only, (3) systematic and literature reviews, (4) research protocols, and (5) reports of mobile technology in animal subjects.
Two authors (CH and CB) performed abstract screening. Three authors (KM, CH, and CB) subsequently reviewed full-text articles, and extracted and stored the data in a Microsoft Excel database developed for this review. From the eligible studies, we extracted the title, publication year, journal name, impact factor, target population, geographic region, setting, and relevance to mHealth and ethics. For each stage of the review, two reviewers (KM and CB) independently reviewed each full-text article. Discrepancies were discussed collectively until consensus was reached.
Given the diversity of articles included in the final scoping review, we employed an iterative team discussion approach to the analysis in order to establish the main themes related to ethical and related concerns. We use descriptive statistics to summarize the characteristics of the studies, including country of publication, year of publication, area of focus, study design, and mHealth intervention employed.
The search identified 94 articles eligible for further review (
PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram showing article search and screening.
The 33 articles retained in the final scoping review represent studies conducted in three out of five East African countries, including 14 (42%) from Uganda and 13 (39%) from Kenya (
Three main categories of concerns related to the use of mHealth technologies and mobile phone data can be conceptualized as (1)
Summary of articles included in the scoping review for final analysis (N=33).
Characteristics | Studies, n (%) | |
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Uganda | 14 (42) |
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Kenya | 13 (39) |
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Tanzania | 5 (15) |
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Uganda and Tanzania | 1 (3) |
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2009 | 1 (3) |
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2010 | 1 (3) |
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2011 | 1 (3) |
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2012 | 2 (6) |
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2013 | 4 (12) |
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2014 | 1 (3) |
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2015 | 3 (9) |
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2016 | 4 (12) |
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2017 | 5 (15) |
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2018 | 6 (18) |
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2019 | 5 (15) |
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SMS messaging | 14 (42) |
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Mobile phone app | 5 (15) |
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Mobile phone | 4 (12) |
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CDRb aggregate analysis | 2 (6) |
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Voice and SMS messaging | 2 (6) |
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Mobile phone survey | 2 (6) |
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Tablet | 2 (6) |
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Computer-assisted personal interviewing | 1 (3) |
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Telemedicine | 1 (3) |
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Observational | 23 (70) |
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Mixed methods | 4 (12) |
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Descriptive report | 2 (6) |
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Modelling | 2 (6) |
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Quasiexperimental | 1 (3) |
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Randomized controlled trial | 1 (3) |
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HIV/AIDS | 15 (45) |
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Reproductive health | 4 (12) |
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Infectious disease | 3 (9) |
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Noncommunicable disease | 3 (9) |
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Eye and vision health | 2 (6) |
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Maternal and child health | 2 (6) |
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Data management | 1 (3) |
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Image-based health | 1 (3) |
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Telemedicine | 2 (3) |
amHealth: mobile health.
bCDR: call detail record.
Descriptive themes identified regarding ethical, legal, regulatory, and sociocultural concerns of mobile health (mHealth) interventions and mobile phone data use.
Studies and countries | Domain of concern | mHealth intervention | Key recommendation | |
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Uganda [ |
Cannot consent due to failed understanding of technology | Computer-assisted personal interviewing, mobile phone surveys, telemedicine | Participants’ inadequate understanding of the capabilities of mHealth interventions; thus, the question of whether they understood sufficiently to properly consent was raised |
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Tanzania and Uganda [ |
Consent must be a prerequisite to mHealth interventions | Image-based mHealth app | Not provided |
|
Kenya [ |
Consent needed for different types of prevention of mother-to-child transmission information | SMS text messaging | Not provided |
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Uganda [ |
Password/PINa protection | SMS text messaging, mobile job aid, mobile phone tool | Use of PIN and passwords offers protection of confidentiality. However, the mere presence of passwords may arouse suspicion by intimate partners and others |
|
Kenya [ |
Phone theft, data breaches | Smartphone app | Not provided |
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Tanzania [ |
Phone sharing | Smartphone app | Not provided |
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Tanzania [ |
Data breaches, phone theft, access rights to protect client data | Smartphone app, mobile job aid, mobile app | mHealth interventions should have an eye toward maternal perception of data security, and with prior and ongoing consultation with community members. Locking phones with a password improves the ability of CHWsb to maintain confidentiality of their clients’ information, particularly for women who did not want to disclose their use of family planning to their husband or other family members |
|
Kenya [ |
Phone theft | SMS text messaging, smartphone ophthalmic exam | Not provided |
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Uganda [ |
Mobile phone numbers linked to national ID cards | Computer-assisted personal interviewing, interactive voice survey | Not provided |
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Tanzania [ |
Breach of pregnancy-related information | Mobile phone app | Support from male heads of household may be important in implementing successful mHealth interventions |
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Uganda [ |
Gender dynamics, delivery of interactive voice survey in voice of opposite sex | Interactive voice survey, SMS messaging | Preference of male or female voices for phone call interventions may vary based on the patient’s gender |
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Tanzania [ |
Data protection legislation | Mobile phone app | Data protection legislation is needed in regions where local dynamics are important when protecting individuals’ health data |
|
Uganda [ |
National ethics guidelines | Interactive voice survey | Not provided |
aPIN: personal identification number.
bCHW: community health worker.
Five studies (15%) described adequate consent concerns pertaining to mHealth technology use. In Uganda, participants feared that computer-assisted personal interviews to collect maternal health data also involved audio recording of their responses. To address this concern, the researchers reiterated the need to ensure that participants clearly understand how the technology works and answer any questions during the consent process [
In Kenya, researchers questioned the validity of informed consent when there are English words that have no direct equivalent translation in a native local dialect such as Kiswahili. For example, one study [
Among the 33 included studies, 22 (67%) described privacy and confidentiality concerns regarding utilizing mHealth technology and mobile phone data. Specifically, two studies were not focused directly on end-user experiences regarding privacy and confidentiality, but highlighted the need for additional research on how mHealth technologies could improve patient privacy [
Four studies conducted in Uganda explored an SMS-based intervention to support care among people living with HIV/AIDS (PLWHA) and revealed mixed results. Some participants had no privacy concerns related to disclosure of their personal health–related information, including their HIV status [
Moreover, there were increased privacy concerns in situations where the participants had not disclosed their HIV status to family members or friends, especially when a phone was shared. Three studies in Uganda described privacy and confidentiality concerns pertaining to the use of SMS-based reminders for medication adherence, fearing that they could result in unintended HIV status disclosure when messages are seen by others [
In Kenya, end users of mHealth technologies supporting PMTCT, antiretroviral therapy (ART) adherence, and family planning indicated that their personal privacy was protected while discussing sensitive health matters via call or text compared to face-to-face encounters [
Aggregated and anonymized CDR data may present minimal ethical and privacy concerns when compared to individual-level or other mobile phone data. Tatem and colleagues [
Seven of the 33 studies (21%) described data security and protection concern among users. Two studies in Tanzania described mixed levels of data security and protection concerns between CHWs and their female clients during the use of mHealth interventions to improve the quality of maternal and family planning services [
In Uganda, the new requirement to link the National Identification Number (NIN) with one’s personal phone number is perceived as a threat to data privacy and security. Mwaka and colleagues [
In Tanzania, Steiner and colleagues [
Three mHealth studies (9%) described concerns related to complex gender dynamics and sociocultural beliefs. In Tanzania, two studies revealed gender-based power imbalances among women and men. Female participants reported low mobile phone ownership and expressed concerns about spouses being suspicious that if a wife owned a phone, it may facilitate infidelity in the relationship [
Two studies raised regulatory and legal concerns regarding using mHealth technology. These studies reflect the perspectives of the researchers governing the studies and the key stakeholders surveyed. In Tanzania, researchers concluded that the findings of their study on reproductive health provided impetus for stronger data protection legislation in regions such as rural Tanzania [
The aim of this scoping review was to synthesize the current state of evidence on the ethical, sociocultural, legal, and regulatory concerns related to the use of mHealth technologies and mobile phone data for public health research in the East Africa region. Our review builds on a growing body of work examining concerns with mHealth data security, privacy, and confidentiality [
African countries have rapidly adopted the use of mobile technologies to support their daily needs such as social, economic, education, and travel needs, among many others. Specifically, the East African region shows a dominance in the adoption of mHealth programs to overcome some structural barriers in the health system [
Sociocultural issues seem to influence the differential levels of positive and negative perceptions around data privacy and confidentiality concerns by gender and user group across the East African region (see
mHealth data have the potential to enhance or jeopardize privacy. For example, the HIV-related stigma and discrimination among PLWHA in Africa could be attenuated if disclosure of HIV status is kept confidential. The findings of this scoping review suggest that among PLWHA mHealth interventions, supporting patient care should be accompanied by unique personal identification numbers or passwords to facilitate protection of privacy and confidentiality of HIV-related information. Several studies from Kenya and Uganda revealed that populations experienced difficulty in understanding the capability of mHealth interventions, which in turn raises questions about the informed consent process [
The lack of comprehensive ethical frameworks to guide the use of mHealth in public health research and practice remains a challenge across countries in the EAC region [
Legal regulation of personal health information within the EAC is not uniformly developed. The Republic of Uganda [
Our work has implications for public-private partnerships, given the potential mutual benefits from CDRs, a largely untapped emerging data type that is collected by telecommunication companies in the EAC region. First, the public and private sectors could share expert human capital financial and infrastructural resources to catalyze the growth of these entities within the region. For example, the public health research enterprise could quickly access a large quantity of rich data on spatial and temporal mobility patterns of the population, which are routinely collected but underutilized by telecommunication companies. This approach to collecting specific data would likely be far more efficient and cost-effective than traditional methods. Second, the private sector could gain new business insights about the populations they serve based on a range of geospatial or data-mining analyses and interpretations generated by public researchers and data scientists. In Africa, many lessons can be learned from major innovations in banking and agriculture that have already spawned from the extensive digital infrastructure. Lastly, we envision a unique opportunity for the public health and private sectors to engage jointly with regulatory policymakers to advance data governance policies for mutual benefit. It is important to note that this process will likely be dynamic given the rapidly evolving mobile technology landscape.
This scoping review has some limitations. First, we acknowledge that we might have missed studies relevant to mHealth and ethical, legal, or privacy concerns in the East Africa region if they were published in electronic databases other than PubMed, in a language other than English, or outside of the period of our study. Second, studies published from Rwanda and Burundi may have been excluded from this review specifically because English was specified as the only language for articles that met other inclusion criteria. In this case, any published articles written in French could have been excluded; however, during our search, we did not identify any such articles in the initial screening. Overall, we believe that the majority of the public health research articles are accessible through PubMed. Therefore, we do not expect that our findings and conclusions were significantly influenced by any papers we might have missed.
This scoping review identified major cross-cutting ethical, regulatory, and sociocultural concerns related to use of data from mobile technologies in the East African region. A comprehensive framework that accounts for ethical, sociocultural, legal, and regulatory concerns in the cultural context of the EAC region is needed to guide the safe use of mobile technology data for public health research purposes.
Data sharing pathways for mobile phone records in mHealth and public health research.
Positive and negative perceptions about privacy, confidentiality, and safety of data collected with mobile phones.
antiretroviral therapy
call detail record
community health worker
Harnessing Data Science for Health Discovery and Innovation in Africa
East African Community
interactive voice response
Mapping Tuberculosis Transmission Study
mobile health
National Institutes of Health
National Identification Number
people living with HIV/AIDS
prevention of mother-to-child transmission
Preferred Reporting Items for Systematic Reviews and Meta-analyses
We acknowledge the contributions of Abirami Balajee in coordination of the initial PubMed search, literature review, and assistance in the initial data abstraction process. This study was funded through the National Institutes of Health/National Institute of Allergy and Infectious Diseases administrative supplement (2R01AI093856-06AI).
Conceptualization: JNS, CCW, RK, ESM, NK; Data Review and Abstraction: CB, CH, KM; Methodology and Formal Analysis: KM, CB, CH, JNS, PDO; Supervision: JNS, PD-O; Writing original draft: KM, JNS; Writing reviewing editing to final manuscript: JNS, KM, CB, PD-O, CH, RK, NK, CCW, ESM. All authors approved the final version of the manuscript for submission.
None declared.