# HIV Client Perspectives on Digital Health in Malawi

Lisa Orii<EMAIL_ADDRESS>0000-0002-6490-4776 University of
WashingtonSeattleWashingtonUSA ,  Caryl Feldacker<EMAIL_ADDRESS>0000-0002-8152-6754 University of WashingtonSeattleWashingtonUSA ,  Jacqueline
Madalitso Huwa<EMAIL_ADDRESS>0000-0001-8786-2487 Lighthouse
TrustLilongweMalawi ,  Agness Thawani<EMAIL_ADDRESS>0009-0007-1221-0901 Lighthouse TrustLilongweMalawi ,  Evelyn Viola
<EMAIL_ADDRESS>0000-0003-1283-6182 Lighthouse TrustLilongweMalawi ,
Christine Kiruthu-Kamamia<EMAIL_ADDRESS>0009-0008-7682-2496
Lighthouse TrustLilongweMalawi ,  Odala Sande<EMAIL_ADDRESS>0000-0003-1481-7161 Lighthouse TrustLilongweMalawi ,  Hannock Tweya
<EMAIL_ADDRESS>0000-0002-8247-1273 University of WashingtonSeattleWashingtonUSA
International Training and Education Center for Health (I-TECH)LilongweMalawi
and  Richard Anderson<EMAIL_ADDRESS>0000-0002-7283-7219
University of WashingtonSeattleWashingtonUSA

(2024)

###### Abstract.

eHealth has strong potential to advance HIV care in low- and middle-income
countries. Given the sensitivity of HIV-related information and the risks
associated with unintended HIV status disclosure, clients’ privacy perceptions
towards eHealth applications should be examined to develop client-centered
technologies. Through focus group discussions with antiretroviral therapy
(ART) clients from Lighthouse Trust, Malawi’s public HIV care program, we
explored perceptions of data security and privacy, including their
understanding of data flow and their concerns about data confidentiality
across several layers of data use. Our findings highlight the broad privacy
concerns that affect ART clients’ day-to-day choices, clients’ trust in
Malawi’s health system, and their acceptance of, and familiarity with, point-
of-care technologies used in HIV care. Based on our findings, we provide
recommendations for building robust digital health systems in low- and middle-
income countries with limited resources, nascent privacy regulations, and
political will to take action to protect client data.

HCI4D, HIV, Privacy, Mobile Devices

††journalyear: 2024††copyright: rightsretained††conference: Proceedings of the
CHI Conference on Human Factors in Computing Systems; May 11–16, 2024;
Honolulu, HI, USA††booktitle: Proceedings of the CHI Conference on Human
Factors in Computing Systems (CHI ’24), May 11–16, 2024, Honolulu, HI,
USA††doi: 10.1145/3613904.3642245††isbn: 979-8-4007-0330-0/24/05††ccs: Human-
centered computing Empirical studies in HCI††ccs: Security and privacy Social
aspects of security and privacy

##  1\. Introduction

eHealth111We refer to “eHealth” as digital information systems used in the
health system, including centrally managed electronic medical record systems,
mobile devices for data collection, and national health indicator reporting.
initiatives, including computer- and tablet-based interventions, offer great
promise for health systems to enhance human immunodeficiency virus (HIV) care,
especially in low- and middle-income countries (LMICs) where HIV prevalance is
high (Kemp and Velloza, 2018). eHealth is considered a key tool for addressing
challenges across the HIV care cascade, including testing, diagnosis,
adherence to antiretroviral therapy (ART), and viral suppression (Bervell and
Al-Samarraie, 2019; Tweya et al., 2016; Wessels et al., 2007; Castelnuovo et
al., 2012). Especially in HIV care, security and privacy222We use the term
“security” to refer to protection mechanisms against threats to client data,
and “privacy” to refer to clients’ right to control how their data is viewed,
shared, and used. issues are of utmost importance, as eHealth applications,
such as electronic medical record (EMR) systems, contain sensitive information
and data exposure could leave people living with HIV (PLHIV) to the face of
stigma and discrimination. While the urgency to address digital security
concerns has garnered attention from researchers within HCI (Chen and Xu,
2013; Murphy et al., 2014; Papoutsi and Brown, 2015; Jacobs et al., 2015;
Okolo et al., 2021; Ryan et al., 2022; Latulipe et al., 2015) and beyond
(Gardiyawasam Pussewalage and Oleshchuk, 2016; Parks et al., 2011a, b;
Ghazvini and Shukur, 2013), the privacy considerations of PLHIV are broad –
extending beyond threats in the digital space to include concerns around
disclosing positive HIV status and the health system’s efforts to protect
client confidentiality. As adoption of eHealth systems gains momentum,
consideration of client preferences, perspectives, and experiences, including
privacy concerns, should be prioritized (Shen et al., 2019) for making
operational decisions in deploying client-centered technology and easing the
adoption of eHealth interventions (LeBlanc et al., 2020; Kim et al., 2015).
However, consideration of, and amplification for, client perspectives is still
lacking, including in LMICs where eHealth implementation is expanding rapidly
(Fritz et al., 2015).

To give voice to clients’ perspectives in an LMIC context, we investigated how
HIV positive clients on ART at one of Malawi’s largest public service delivery
partners for HIV care, Lighthouse Trust (hereafter referred to as Lighthouse),
perceive data security and privacy in the context of electronic and mobile
data collection. By exploring clients’ views, we expand the understanding of
how PLHIV navigate privacy, create opportunities for enhancing client-centered
eHealth care, and provide a forum for clients to express their recommendations
for data privacy improvements in the health system. The motivation for this
study is an effort by Lighthouse to test expanded use of its EMRs for client
management with optimized tablet-based data collection in rural and low
connectivity settings and to strengthen security processes for HIV care.
Lighthouse is a public ART clinic that operates under the Malawi Ministry of
Health (MoH) and serves as a testing ground for client care innovations. As
such, Lighthouse is an ideal setting to inform privacy improvements within the
broader MoH eHealth system.

We address the following research questions in this work:

  * •

RQ1: How do ART clients receiving HIV care in Malawi consider privacy?

  * •

RQ2: How do ART clients perceive the efforts of Malawi’s health system to
protect client privacy?

  * •

RQ3: How do ART clients understand the processes involved in eHealth
initiatives at Malawi’s HIV care program, including digital data collection
tools and data management?

We conducted focus group discussions with ART clients who receive routine care
from Lighthouse. Our findings highlight clients’ broad concerns with privacy
in the health system, their trust in Lighthouse and Malawi’s MoH to protect
privacy, and their understanding of the data pipeline and digital health
system. With respect to RQ1, PLHIV have a broad privacy framework that centers
around concerns and fears associated with unintended disclosure of positive
HIV status, although these concerns carried less weight when disclosing within
the HIV community. With respect to RQ2, clients’ trust in Lighthouse’s devices
for data collection and their interests in contributing their data are an
outgrowth of their trust in the broader healthcare that they receive. With
respect to RQ3, clients’ mental models of Lighthouse’s point-of-care
technologies indicate their familiarity with data flow and recognition of the
value of devices for data collection and management, though there was
uncertainty about the technologies’ security mechanisms and exact usage
practices.

More broadly, we illuminate ART clients’ perceptions of Lighthouse’s eHealth
system and protection of client privacy, contributing recommendations and
considerations that could inform both Malawi’s MoH and other LMIC policies and
practices as digital health systems are strengthened and scaled.

##  2\. Background

Sub-Saharan Africa has approximately 25.5 million PLHIV (AID, 2021). Given
Sub-Saharan Africa’s high burden of HIV and increasing technology use, eHealth
strategies have been employed to support HIV service delivery (Oluoch et al.,
2012), including monitoring adherence to ART, managing patient data, and
managing the ART supply chain (Fraser et al., 2005, 2004; Bervell and Al-
Samarraie, 2019; Tweya et al., 2016; Wessels et al., 2007; Castelnuovo et al.,
2012).

This study was conducted in Lilongwe, the capital city of Malawi, a country in
Southern Africa with over 50% of the population living in poverty (Caruso and
Cardona Sosa, 2022). Malawi has over 900,000 PLHIV (approximately 8% of the
adult population) (una, 2023). Lighthouse is a registered public trust and a
WHO recognized center of excellence whose role is to support the Malawi MoH’s
HIV response. Lighthouse provides services spanning integrated HIV prevention,
testing, treatment, and care across two large urban facilities in Lilongwe
district in partnership with Malawi’s MoH. All Lighthouse facilities employ
Malawi’s real-time point-of-care EMR system, launched in 2010, to ensure that
ART services comply with HIV guidelines and to ease client- and clinic-level
monitoring and evaluation (Waters et al., 2010; Douglas et al., 2010a). The
computers at the facilities are stationed at the reception desk, vital signs
station, laboratory, examination rooms, and pharmacy, to enter and access EMRs
(Figure 1 left).

Figure 1. A computer at the facility used as an EMR access point at the
reception desk by Lighthouse receptionists (left), a tablet used during a
client’s CBC appointment (middle), and health passport booklets that ART
clients bring to appointments (right).

Three images of data collection tools used at Lighthouse. The left image is of
a computer used at Lighthouse’s facility and two receptionists. One
receptionist is holding a paper with a barcode on it. A barcode scanner is on
the table where the computer is situated. The middle image is of a tablet that
is held by a healthcare provider during a CBC appointment with the client on
their left. The right image is of two clients holding their yellow health
passport booklets.

In 2016, Lighthouse introduced community-based care (CBC), a nurse-led
community-based ART program where stable clients registered at facilities can
access ART services at one of 120 community-based distribution points within
Lilongwe, including churches, schools, outdoor areas, and client homes. At CBC
settings, community health nurses collect client data using an offline tablet-
based application that operates in rural and low connectivity environments
(Figure 1 middle). Due to restrictions in connectivity and automatic data
synchronization, the current version of the tablet-based application locally
stores client data until the tablets are returned to the facilities and the
data is entered into the EMR system in the computers. With the increasing
demand for CBC, Lighthouse is testing a new offline-first tablet-based
application to expand the reach of EMRs to CBC settings for facilitating
efficient data collection and making client history available to the
providers. CBC clients are familiar with both computer-based data collection
at the facilities and tablet-based data collection at the CBC settings. The
services that are offered through CBC are the same as those at the facilities,
which include, but are not limited to adherence monitoring (pill count),
screenings, client side-effects and co-morbidity review, refill of
prescriptions, documentation of current health status on clients’ health
passport booklets and on the tablet-based application, and issuing of next
appointment date.

At both facilities and CBC settings, clients use portable, paper-based health
passport booklets which are usually kept by clients (Figure 1 right). Each ART
client is issued an ART barcode that is attached to the health passport. The
barcode is scanned at facilities’ computers and entered manually in CBC
settings’ tablets to confirm client identity and to facilitate longitudinal
data capture. The health passport is used to check in the client for the
appointment and for the provider to manually record information relevant to
the client’s health.

##  3\. Related Work

###  3.1. Fear of Inadvertent Disclosure of Positive HIV Status

Disclosure of positive HIV status is recognized as an important first step for
preventing transmission, ensuring effective treatment, and receiving social
support (Kalichman et al., 2003; Simoni et al., 2000; Ding et al., 2011; Do et
al., 2010). However, disclosure risks leaving PLHIV vulnerable to financial
and social ruin (Maestre et al., 2021), posing a challenge for PLHIV to
disclose to access clinical and social support (Natarajan and Parikh, 2013).
PLHIV consider various factors in the disclosure process, including disclosing
to whom, for what purpose, and how. Often, PLHIV practice selective disclosure
of positive HIV status, in which individuals disclose to some people, such as
trusted partners, family members, and healthcare providers, but not to others
(Kalichman et al., 2003; Veinot, 2009; Ismail et al., 2021). Some PLHIV view
disclosure as a path to destigmatizing and normalizing HIV (Warner et al.,
2019) and share stories of perseverance and hope to motivate other PLHIV to
seek support and disclose to their sexual partners (Natarajan and Parikh,
2013). For others, disclosure helps with securing a support system for when
one falls ill (Linda, 2013). LMIC-based studies find that HIV stigma acutely
influences PLHIV’s decisions in their care, including accessing ART services
far from their homes to avoid unwanted disclosure (Linda, 2013; Christ et al.,
2022; Pellecchia et al., 2017; Sande et al., 2020; Zakumumpa et al., 2020) and
having difficulty with treatment adherence out of fear of being seen consuming
pills (Ekstrand et al., 2020; Musumari et al., 2013).

In the HCI community, PLHIV’s concerns of disclosure in data-related
activities have been examined through the usage of social media (Warner et
al., 2019, 2018, 2020; Maestre et al., 2021; Bussone et al., 2020, 2016) and
technologies for supporting disclosure processes and coping with HIV-related
stigma (Maestre et al., 2023; Kumar et al., 2019). The literature highlights
PLHIV’s values and needs for privacy and confidentiality in their concealment
of HIV status (Maestre et al., 2023; Warner et al., 2019, 2020) and fears of
unintended disclosure of positive HIV status in privacy-effective environments
(Kumar et al., 2019). From a study in Ethiopia, Bezabih et al. (Bezabih et
al., 2023) highlight disclosure as a process as opposed to a one-time event,
in which positive HIV status is discreetly disclosed through a step-by-step
approach of using indirect signals and cues or selective disclosure. However,
much of the HCI literature focuses on disclosure and privacy considerations
outside of the healthcare context. Accessing ART services carries a risk of
inadvertent disclosure of HIV status due to the abundance of sensitive data
that is collected and moved through the health system (Sweeney et al., 2013).
Thus, fear of unintended disclosure is highly relevant to ART clients’ privacy
framework and the decisions they make within and beyond data-related
activities in their care.

###  3.2. Clients’ Trust in the Health System

Clients’ perceptions towards the health system have been largely studied in
the context of clients’ willingness to share data with the health system.
Clients want transparency in the data sharing process by knowing who accesses
their data and by controlling the sharing of their data (Schwartz et al.,
2015; Caine and Hanania, 2013; Kim et al., 2015; Morse et al., 2023),
including determining which data to share with whom (Schwartz et al., 2015;
Caine and Hanania, 2013). Clients are often willing to share their data to
inform public health decision-making (Weitzman et al., 2012; Kohane and
Altman, 2005), but concerns around data privacy can contribute to their
hesitancy to share data (Yeager et al., 2014; Eden et al., 2016). Such
concerns arise from clients’ lack of awareness of the data sharing mechanism,
which is induced by the distance between clients and healthcare organizations
and clients’ unfamiliarity with the technical mechanisms for electronic data
sharing (Esmaeilzadeh et al., 2019). To address such issues, researchers
emphasize the importance of building trust between clients and the health
system through clear, transparent, and comprehensible policies around data
sharing and privacy (Eden et al., 2016; Esmaeilzadeh et al., 2019). Client
trust is critical for protecting client privacy and for creating buy-in from
clients to participate in data sharing (Weitzman et al., 2012; Hussein et al.,
2022).

Given that healthcare providers are clients’ closest contact in the health
system, building client trust at the provider level could positively influence
client trust in the larger health system (Platt and Kardia, 2015). Providers
in reputable healthcare organizations that develop robust privacy policies
play a significant role in building client trust in projects for electronic
data sharing (Esmaeilzadeh et al., 2019). Trust in providers and security in
the client-provider relationship also alleviate clients’ concerns with
technology security (Shield et al., 2010). Clients’ trust in their providers
simultaneously influence decisions about their own health. Nganga et al.
(Nganga et al., 2019) found that clients in Kenya followed their providers’
recommendations regardless of whether or not they understood the advice and
avoided openly asking questions.

###  3.3. Client Perspectives on Devices at the Point-of-Care

Clients’ perceptions towards devices used at the point-of-care have been
extensively studied in high-income countries to understand their impact on
client-provider interactions (Chen et al., 2011; Zamani and Harper, 2019;
Weiler et al., 2018; Shachak and Reis, 2009; Crampton et al., 2016). Clients
perceive computers at the point-of-care as physical barriers to client-
provider engagement (Chen et al., 2011; Shachak and Reis, 2009; Crampton et
al., 2016) that elevate providers’ authority and medical expertise in front of
clients (Chen et al., 2011). However, a gradual installation of computer-based
EMR systems in exam-rooms can allow clients and providers to adapt to the
interventions, help maintain healthy client-provider relationships, and
encourage health information sharing (Shield et al., 2010).

The literature in HCI (Okolo et al., 2021; Kumar and Anderson, 2015; Molapo et
al., 2016; Yadav et al., 2021, 2022) and beyond (Hall et al., 2014; Rivera-
Romero et al., 2018; Sadasivam et al., 2012; McCool et al., 2022) have noted
the potential for successfully adopting mobile devices for health in LMICs.
However, few focus on client perspectives towards devices used at the point-
of-care. Most similar to this topic is the study of client perceptions towards
devices used for conducting health surveys in LMICs (Cheng et al., 2008, 2011;
Shirima et al., 2007; McLean et al., 2017). Device familiarity impacts survey
respondents’ device acceptability and hence their willingness to answer survey
questions (Cheng et al., 2011; Van Heerden et al., 2013; Knipe et al., 2014;
Mercader et al., 2017). Most notably, a study in Angola in 2011 found that the
lack of introduction to handheld computers used for surveys contributed to
respondents’ apprehension to answer HIV-related questions and to disclose
sexual behaviors to interviewers (Cheng et al., 2011). However, in another
study in Sri Lanka in 2014, in which respondents were familiar with handheld
devices because of the wide availability of mobile phones, the devices were
conducive to attracting interest to the survey (Knipe et al., 2014). Even with
the lack of familiarity with devices, concerns can be overcome with careful
explanations of device purpose (Knipe et al., 2014). Maintaining data
confidentiality is also important to survey respondents. Computers were
perceived to be more secure than paper for recording and storing personal data
because limited technology literacy restricted access to data and because
paper was more prone to misplacement or damage (Cheng et al., 2011; Mercader
et al., 2017). More broadly, security and privacy views can derive from
individuals’ experiences with technologies, their health, and varying
sensitivities around their health conditions (Liu et al., 2016; Caine and
Hanania, 2013). Especially in the context of sensitive or stigmatized topics
such as HIV, respondents’ acceptability of technology for health data
collection is critical for obtaining accurate information (Cheng et al.,
2011). Although perspectives on technologies used for health surveys in LMICs
have been thoroughly studied, the gap in literature on client perspectives on
point-of-care devices in LMICs warrants further research.

##  4\. Methods

Our primary objective was to explore and understand the perceptions of
Lighthouse’s HIV positive clients on ART with regard to data security and
privacy, electronic and mobile data collection, devices for data collection,
and data management and sharing processes. The focus group discussions (FGDs)
with ART clients were conducted in Lilongwe, Malawi during September and
October 2022. This research received approval from the IRB at the University
of Washington and the Malawi MoH IRB, the National Health Science Research
Committee.

###  4.1. Setting

The study was conducted in urban and peri-urban areas of Lilongwe district.
FGDs were conducted in participants’ routine Lighthouse care settings, in
either the facilities or CBC settings.

###  4.2. Participant Recruitment

Eligible PLHIV on ART from the Lighthouse facilities and the CBC settings were
identified at clients’ routine care settings by the Lighthouse or CBC study
team using purposive sampling (Tongco, 2007). Eligible participants were aged
18 and above, had at least a primary education, and consented to audio
recording. In a private location, each eligible participant individually
underwent an informed consent process. Appropriate information and explanation
of the study goals and objectives were also provided in a consent form written
in an accessible language level for improved comprehension. The process of
obtaining informed consent was prepared by the local staff in Malawi, taking
into account the average literacy level of their clients. The consent form
highlighted two key points: 1) the voluntary nature of participation in the
study, emphasizing that it is entirely up to the individuals to decide whether
or not to take part, and 2) ensuring that their decision to participate or not
will not have any negative impact on the ART care. The local study staff
provided detailed information about the study procedure, including the use of
audio recording. The risks and potential benefits of study participation were
discussed and questioned answered. After signing the consent form, clients
were still able to refuse to answer questions or withdraw from the study.

Lighthouse is the largest public provider of ART services, covering urban,
peri-urban, and rural populations throughout the Lilongwe district. As such,
participants were from a diverse client population. In general, 60% of ART
clients in Malawi and at Lighthouse are female. We recruited 63 participants
(51 females, 12 males) through Lighthouse’s two urban facilities and four CBC
settings. Participants ranged in age from 21 to 73 (mean=47, SD=11.61).
Participants were compensated with 10310.00 Malawian Kwacha (approximately $10
USD) for their participation. We refer to participants from the facilities as
P#-Facility# and participants from the CBC settings as P#-CBC#.

###  4.3. Study Procedure

A total of eight FGDs were conducted: four in facilities and four in CBC
settings. Each FGD was composed of 7-9 participants and was facilitated by a
Malawian qualitative researcher with support from a notetaker. All FGDs were
conducted in Chichewa, the main language used in Malawi. Each FGD began with a
short introduction by the facilitator, including the background, purpose, and
objectives of the study, and a review of confidentiality and consent
guidelines.

Participants were first asked an ice-breaker question about their preferences
for care settings to allow them to gain comfort in speaking. Next,
participants were asked about the flow of their appointment visits, what
information they shared with providers, and how providers used the devices for
data collection at their routine care setting (computers at facilities,
tablets at CBC settings) during appointments. Participants were also asked to
compare the devices used in their routine care setting to other tools they see
being used at Lighthouse, such as paper records (e.g., “In thinking about how
your providers record your information in a computer or on paper, which do you
prefer and why?”). Participants were asked about their comfort with their
health information being collected with devices, how they make sense of how
the devices are used (e.g., “How do you know that the provider is entering
your data into the tablets if you cannot see what they are doing?”), and how
they think devices affect care (e.g., “How do you think the tablets affect the
way your providers guide your care?”).

The next set of questions aimed to understand participants’ mental models of
data flow and management. Participants were asked about data storage and
transfer (e.g., “How do you think your health information moves from the
computer that the provider uses to other people at Lighthouse?”, “What do you
think happens to the data in the tablet at the end of the day?”). To
understand participants’ perceptions towards access to personal health
information, participants were further asked to identify entities with whom
they would and would not want their data shared with, explain views on data
sharing with the MoH and authorized entities (e.g., “What do you think the MoH
does with the data?”), and share concerns about sensitive information being
seen by individuals outside of the health system (e.g., “How would you feel if
your health information is accessed by your family or your neighbors?”). After
we informed participants of a Malawian policy that requires local data hosting
for local partner digital health implementations, participants were asked
about their views on the country’s efforts to protect their data.

Lastly, participants were given time to share feedback for Lighthouse and to
ask questions about data security and privacy and data management which were
not addressed during the session. Each FGD lasted approximately one hour.

###  4.4. Data Analysis

Audio recordings of FGDs were transcribed in Chichewa and translated into
English for analysis. We used a mixture of deductive and inductive thematic
analysis (Braun and Clarke, 2006) to code the transcripts. The first author
developed a codebook while conducting a detailed reading of all transcripts
and returned to the transcripts to apply the codes. The second author reviewed
the code application and resolved disagreements through discussion with the
first author. The second author did not add codes but helped refine the
language and meaning in the initial codes. As a researcher with more than a
decade working at and with Lighthouse, the second author also provided a
larger view of the environment and history of the responses, helping add
nuance and trustworthiness to the codes and their refinements. Similar codes
were grouped into higher level themes, reflecting those suggested a priori
from the FGD guide (deductive) and from reviewing participants’ contributions
(inductive). The themes and their alignment with quotes was discussed at three
separate meetings with the Lighthouse study team – fine tuning the themes and
illustrative quotes until all believed that the findings and discussion points
reflected the diverse perspectives of clients. We tried to tread very
carefully away from broad generalities as these opinions and perspectives are
limited to these participants – who may not reflect larger norms from this
larger ART setting.

###  4.5. Ethical Considerations

The first author worked closely with the in-country team on all aspects of the
study design, refining of the study procedure, implementation, and
interpretation of the findings. The first author worked closely and on-site
with the lead, local qualitative interviewer to refine the FGD guide. The
local interviewer is a seasoned qualitative researcher who is part of the
Lighthouse team. She previously conducted similar sensitive research among
this population. She does not routinely interact with clients but is well
acquainted with the community, the clients, the sensitivities, and the clinic
setting.

##  5\. Findings

We organize our findings into three sections. We begin with Disclosure and
Privacy because unintended disclosure of positive HIV status is a major
privacy concern for PLHIV. This section describes participants’ views towards
disclosing positive HIV status and the intrinsic relation between privacy and
disclosure. Confidence in the Health System to Protect Client Privacy
describes participants’ trust in the health system, including healthcare
providers and national efforts, to protect client privacy. Lastly, Perceptions
towards Data Collection Tools and Data Management describes participants’
understanding of computers, tablets, and health passports used during data
collection and data management processes.

###  5.1. Disclosure and Privacy

HIV disclosure is a complex challenge and experience that PLHIV face. As such,
we first elaborate on participants’ perspectives towards disclosure to give
context to their concerns around data privacy.

####  5.1.1. Selective Disclosure

When explaining their discomfort with their data being accessed by individuals
outside of the health system, participants referred to their fears of
unintended disclosure of positive HIV status. Participants were concerned
about having their positive HIV status known publicly, as there are “[people]
who diminish our respect, they say bad things” (P4-CBC2). Participants agreed
that publicly sharing or exposing personally identifiable information - name,
phone number, address - would not only be “violating one’s human rights”
(P1-CBC1) but also severely impact PLHIV’s well-being, in which “some may even
lose their mind and die as they will be surprised” (P9-CBC4). The consequences
of failing to keep data confidential will extend to the clients’ family:
“There is a lot that is being said about us who are HIV positive. Once a
person knows that you are positive, they think everyone within your family,
children inclusive, are positive. The children are not free, they are called
names because the parent is positive” (P4-CBC2).

To avoid having their status wrongfully exposed, some participants engaged in
selective disclosure, in which they “share the information with the person
whom you trust” (P1-CBC1) and “consider which people to disclose to as well as
the atmosphere if the people will be able to maintain
confidentiality”(P6-Facility2). Disclosing to trusted individuals empowered
clients to establish a support system that encouraged them to adhere to
treatment. Participants said their friends or family help them take their
medication, get medication refills from Lighthouse, or provide transportation
money for appointments. Some participants emphasized the importance of
disclosing their status to family, especially their children, because
“children need to know how to protect you” (P4-CBC2) and they can become “my
own doctor” (P1-CBC4). However, not all PLHIV were comfortable disclosing to
their families: “I have young sisters and brothers, but I have never disclosed
to them because of how they talk, discriminatory” (P8-CBC4).

####  5.1.2. Disclose to PLHIV for Encouragement and Survival

Participants were not concerned about the consequences of data being shared
within the HIV community. In CBC, clients rely on group leader clients for
support with assisting when one is sick or retrieving medication. P4-CBC2
explained that they voluntarily “tell [group leaders] everything, including
how you are feeling so that you are on the same page,” indicating that they
share sensitive information with other CBC clients for medical support.

The HIV community was described as “one family” that PLHIV can rely on for
unwavering support (P9-CBC4). Disclosure was viewed as a critical experience
that can “lead [other PLHIV] to salvation” (P1-CBC2). As a result,
participants wanted to “counsel those that are keeping [their status] to
themselves” (P8-Facility1). Disclosure of positive HIV status was viewed as a
path for creating hope for a healthy future for other PLHIV, as expressed by
P2-CBC2:

> “I told [my acquaintance], ‘have you seen how I am? I do take medication. I
> do not mean that you also take the medication but let’s just go so that you
> can meet the providers.’ We went together to [a clinic] where she tested HIV
> positive. She was counseled and I also encouraged her. I told her I am
> healthy, and I started taking medication in 2009. You cannot recognize her
> today. She is doing fine. She appreciates me whenever we meet.”

Participants also recognized that disclosure can help one improve health
management:

> “I was comfortable disclosing to everyone because if I am to keep it to
> myself, I would have died by now. Because when you disclose to someone about
> your status, they tend to share with you some other ideas. You also motivate
> others who come and ask how you managed to open-up, in that case you are
> helping other people … But when I open-up and shared about my status, I
> noted that some of them became comfortable and asked me how I take care of
> myself so that they can do the same.” \- P3-Facility4

####  5.1.3. Obligation to Protect Fellow PLHIV

Participants expressed an obligation to protect fellow PLHIV from
discrimination and stigma. One participant explained that a specific sticker
on a client’s health passport may indicate HIV treatment for an insider who is
also on ART: “if we see that, we do not tell anyone as we were taught [by
providers] that we need to maintain confidentiality” (P4-CBC2). In another
anecdote, one participant shared how they encouraged another PLHIV to join
Lighthouse’s CBC without revealing that they had accidentally come to know of
this person’s status:

> “I escorted my neighbor to maternity. She gave me the health passport and I
> happened to be playing with it in my hands. She didn’t tell me that she is
> positive and on ART, but she saw me with her health passport. I just gave it
> back … She later opened-up [about her HIV status] when we got home … I told
> her that I am going to the clinic to get my medication since I am on
> treatment. That is when she asked me that you are on medication, she said
> that she is on treatment. She is also one of the CBC members. I had
> maintained confidentiality at the time and didn’t tell anyone.” \- P5-CBC2

###  5.2. Confidence in the Health System to Protect Client Privacy

Here, we expand on participants’ perspectives of the health system’s efforts
to protect client privacy in light of the recognition that client privacy
protection is of utmost importance.

####  5.2.1. Trust in National Efforts

##### Privacy Protection

After informing participants about the MoH policy to require local data
hosting for local partner digital health implementations, participants
responded optimistically saying that the policy protects clients, as
summarized by P6-Facility2: “It is good, it is giving us a picture that [the
MoH protects] the Malawians and that everyone has the right regarding their
health. In addition to that, we are protected.” P4-CBC2 also believed that the
policy helps protect the image of Malawi as a country that is actively
protecting client privacy. P7-Facility3 emphasized that Malawians’ information
should remain within the country and “other countries just provide the
support” as opposed to being the main manager of Malawi’s client data,
implying how data ownership should be navigated.

At the same time, some participants were uncertain about or misunderstood the
intention of the policy. P4-Facility3 worried that the policy would hinder
data sharing to donors who help fund Malawi’s HIV care. Another participant
asked, “We hear that the drugs that are helping us are from the outside
countries, so how do they keep the information confidential so that those
outside Malawi wouldn’t know?” (P2-CBC1), suggesting that they did not
understand that aggregate data for sharing is deidentified and client-level
data is confidential.

##### Request Assistance for HIV Care Programs

Participants stressed the importance of sharing data with other countries that
assist Malawi’s HIV care program to ensure that the support is “not one time
but throughout” (P7-Facility3). ART clients rely on the MoH to acquire funding
that sustains Malawi’s HIV response (P8-Facility3). Participants expressed
concern that the failure to share data and request funds “may affect the
project” to support HIV care (P7-Facility3) and consequently “[the clients]
may end up being affected” (P3-CBC4). At the same time, participants were firm
in their belief that data gathered through research or shared through the
media should only be general or aggregate data that “[makes] known the issue
that the people are facing and not the person” (P6-CBC4).

####  5.2.2. Trust in Lighthouse

Participants trusted that Lighthouse staff, especially healthcare providers
execute their day-to-day work in a manner that respects and protects clients’
privacy. Lighthouse was described as a caring organization that brought
comfort to clients: “Lighthouse is the parent to those of us who have issues.
As a parent is expected to provide care to the child at the right time, when
we get here, we get what we want easily and properly. We appreciate the
support that we get” (P7-Facility3). Participants trusted that Lighthouse took
precautions to protect client records, as summarized by P7-Facility4: “This is
the headquarters and I noticed that our records are kept safe. They have never
given me a wrong file. They always give one their right file. This means our
files are well protected and no one can know about another person.”

##### Trust that Healthcare Providers Maintain Confidentiality

Providers were believed to have good intentions to guard clients’ health and
privacy (P7-Facility4). Participants’ confidence in their providers stemmed
from their trust that providers have never broken confidentiality: “We have
come a long way and have never heard anyone talking about our status, or that
the providers disclose that they are coming to give us medication, I have
never heard of anything like that. So, I plead that they should continue with
that behavior, being respectful” (P7-CBC1). Participants trusted that
providers will “just share with [my family] information but not necessarily
regarding my status,” implying the expectation that private, identifiable data
will not be shared (P6-Facility2).

Participants’ trust in providers impacted client-provider interactions. Some
participants avoided asking many questions during appointments to not appear
as if they were questioning their providers’ authority: “If we are to ask them
questions and show that we are being suspicious then the provider is also a
human being and might tell us to go to someone [else] since we don’t trust
them” (P6-Facility2). Providers were seen to have high status because of their
exclusive knowledge of how to use devices at the point-of-care (P6-CBC4).

###  5.3. Perceptions towards Data Collection Tools and Data Management

Participants explained the purposes and benefits of the computers used at the
facilities, tablets used at the CBC settings, and health passports, and shared
their understanding of data flow and management in the continuum of care.

####  5.3.1. Purposes of Devices for Data Collection

##### Carries Health Information

Participants recognized that the computers and tablets carry clients’ health
information such as when the client tested for HIV, the type of medication
administered, when medication is collected, appointment dates, when the client
is sick, and lab results that indicate viral load. One CBC participant
described how providers enter information into the tablet during the
appointment: “when they see us, they document in the tablet, words like “it’s
alright” (P1-CBC3).

##### Informs Providers’ Decisions for Care

Participants agreed that client data in the computers and tablets aid
providers with accomplishing important tasks for care, including calculating
adherence to medication, monitoring appointment compliance, and reminding
providers to take blood samples. Participants assumed that providers accessed
client history in the computers and tablets, like a “bank where one can get
the bank statement [to] show you your account activities” (P5-CBC2), which
helps providers “follow the right procedure” (P2-CBC1) and “provide the right
care” (P7-CBC4), such as prescribing new medication. Outside of appointments,
participants believed that the devices were helpful for planning the number of
drugs to bring to the CBC settings (P1-CBC1) and transferring data to another
provider in case the primary provider is unavailable (P7-Facility4).

##### Uncertainty about Devices’ Purposes

Participants made educated guesses about the usage of devices based on their
observations: “the providers poke the tablet whenever we respond to their
questions … about our health” (P7-CBC4). However, participants noted that
there is little direct communication from the providers on how devices are
used. P8-CBC3 said that “what we know is that the provider documents for us,
whether they write what we told them or not, we don’t know,” suggesting that
there is no way for clients to confirm whether providers are correctly
recording appointment-related content. P5-CBC3 responded immediately after
saying, “some of us even wonder what they are doing on the tablet.” How the
data is used after the appointment remains a mystery: “after we leave, we do
not know what they do” (P8-Facility1).

####  5.3.2. Comparing the Benefits of Data Collection Tools

##### Device Benefits: Efficiency

Participants thought paper records placed a heavier work burden on providers
than tablets do: “It will take [the providers] a lot of time to enter the
information on paper unlike a tablet which has a lot of space” (P3-CBC4).
Searching client information with devices was thought to take minimal effort
because participants assumed that all of the important information was stored
in them: “We registered during the first visit. When I reported for the second
time, they just asked about my phone number and searched it on their tablet
and they were able to find all the information, which shows that it is easy.
If it was paper-based, then [my information] could have been lost” (P7-CBC1).

##### Device Benefits: Data Safety

Participants agreed that devices protected data better than paper records.
Health passports, which are brought home, are easier to access whereas
computer-based documentation is not accessible to most because “not everyone
who comes [to the facility] knows [how to use] computers.” (P7-Facility1).
Four participants mentioned password protection as a security advantage that
computers and tablets have over paper. For example, P1-Facility2 attributed
the exclusivity of passwords as a strength of devices: “for someone like me
who does not know computers, [they] cannot know the password.” The most
serious concern with paper was its susceptibility to damage, while
“information that is kept in a computer stays for a long time. It can’t be
deleted” (P4-Facility3). Data loss was a minor concern with computers and
tablets because participants assumed that there were multiple access points to
client data and there were protection mechanisms in place.

##### Health Passport Benefits: Retention of Own Health Records

The most notable benefit of health passports was that clients maintained
access to and control over their health information:

> “It is our right to access the information. There are others who do not have
> time to ask the providers about their viral load and that information is
> kept in the health passport. We can also see the information that has been
> documented in the health passport … One can lose the health passport, but
> when you report to the facility, they check and find your [client] ID. This
> shows that these two approaches are good. Health passports keep the
> information for themselves, and the other information is kept at the
> facility in the computers.” \- P8-Facility3

However, some clinical notes in health passports are difficult to interpret:
“I would have liked it if [our providers] would tell us the diagnosis … Many
are the times that we just receive the drugs, but they don’t tell us what the
diagnosis is. They even document in italicized format [in the health
passports] and not everyone can be able to read” (P8-CBC3). Participants
wanted a layperson’s explanation of their health so that they “know the steps
that we need to take” for health management (P7-CBC1).

####  5.3.3. Data Management and Data Flow

##### Access to Client Data

Participants had a clear notion of who data should and should not be shared
with, as PLHIV, providers, and LT program teams are all well aware that
inadvertent disclosure has severe consequences for PLHIV’s lives. Participants
expressed that they want their data shared with providers, trusted family
members, the MoH, program supervisor and coordinator, district health
officers, NGOs, and other countries or donors. Participants agreed that client
data should not be shared with non-medically trained personnel at Lighthouse,
such as cleaners, guards, accountants, and other clients. Although these
groups cannot access client data, participants were concerned about being seen
walking in and out of Lighthouse, which is a widely-known provider of ART
services: “[The cleaners and guards] are talkative … When you are passing by,
they will say ‘don’t admire her hips, she was at Lighthouse’” (P7-Facility1).
P3-Facility1 explained that “not everyone is supposed to know your status
through the facility” and that client data should only be shared with staff
that is relevant to data collection. In addition to stressing the importance
of assigning data access levels to job responsibility, participants noted that
access should not be based solely on position, but also “[having] a specific
purpose [to] access the information whilst maintaining confidentiality”
(P6-Facility2).

##### Data Consolidation and Transfer

Through personal experiences, participants made sense of the data flow in the
continuum of care. During facility appointments, clients visit multiple
stations to meet different staff and discuss various information. Participants
observed that their information “gets to everyone who has a computer at
Lighthouse” and can be accessed by entering client ID (P3-Facility4).
Consequently, information was assumed to be shared between providers so that
providers can ensure that important information is not missing or neglected
during appointments (P5-Facility2).

In terms of storing data collected at CBC settings, although most participants
thought the tablets stored data, participants also recognized that their data
was transferred to the facilities’ files or computers: “One time when I
reported to the facility, I would just go and mention my name and the computer
would be able to show all the information” (P8-CBC3). Transferring data to the
facilities was considered important for continuing care because “whenever [we]
get sick on a day that is not a CBC day, we can report to the facility and
find the information in the file” (P3-CBC2). While only two participants
discussed the transfer process, both participants alluded to the similarity
between the tablets and personal mobile phones. P6-CBC4 described the way data
is transferred from the tablet to the computer as “the way we do with our
phones, by forwarding the information … like a message.”

##  6\. Discussion

Our main findings are as follows:

  1. (1)

When considering the consequences of data being shared to groups outside of
the health system, participants referred to fears associated with unintended
disclosure of positive HIV status. PLHIV are deliberate about to whom they
disclose their status. Disclosing to other PLHIV, by choice, carried less
worry as they trusted one another not to reveal anyone’s status.

  2. (2)

Participants trusted Malawi’s health system to responsibly manage and share
sensitive client data. Participants also recognized the vital role Lighthouse
plays in protecting their data, noting their expectation that healthcare
providers must maintain confidentiality and minimize risks for unwanted
disclosure.

  3. (3)

Participants understood how computers and tablets were used in their care,
based on observations they made during appointments and personal experiences
using technologies. They expected computers and tablets to be more efficient
and secure than paper records, although paper-based health passport booklets
are important in that they provide clients with a record of their own health.

In this section, we discuss ART clients’ broad privacy views and provide a
framework for understanding Lighthouse’s successful mobile device adoption.
Lastly, based on our discussion points, we provide recommendations for
building a strong digital health system that may be applicable to other LMICs.

###  6.1. Broad Privacy Concerns with Living with HIV

The health privacy discourse in HCI has highlighted digital security concerns
around data management (O’Kane and Mentis, 2012; Murphy et al., 2014; Chen and
Xu, 2013; Baker et al., 2011) and the security and privacy trade-offs made in
online spaces (Warner et al., 2019, 2018, 2020; Maestre et al., 2021; Bussone
et al., 2020, 2016). Our work contributes a broader view of privacy held by
PLHIV in the healthcare context and beyond that centers around the influences
and impacts of disclosure-related decisions and concerns.

####  6.1.1. Disclosure

By having a clear notion of who should and should not access their data,
participants implied that they want to control how their data is shared
(Schwartz et al., 2015; Caine and Hanania, 2013; Kim et al., 2015; Morse et
al., 2023) and more largely, control their disclosure processes. Participants
were concerned about social rejection or discrimination that follows
inadvertent disclosure of positive HIV status, echoing findings from prior
work (Maestre et al., 2023). With respect to RQ1, PLHIV took control of their
disclosure processes by practicing selective disclosure to minimize the
chances of unintended disclosure. At the same time, they expected the health
system to uphold confidentiality and manage the sensitive data that clients
trust it with. However, participants were aware that there were unavoidable
risks of unintended disclosure, including being seen visiting Lighthouse
facilities. The ever-present risk of inadvertent and unwelcomed disclosure
permeates ART decision-making among clients, from choosing where to start care
to adhering to treatment.

Participants were not heavily concerned with the privacy risks of disclosing
within the HIV community. Also, with respect to RQ1, PLHIV disclosed
comfortably within the HIV community to gain and encourage communal and
medical support, and respected other PLHIV’s approaches to disclosure. Through
the decision to disclose to other PLHIV, participants gained communal support
and improved self-management. The inherent trust that bonds the HIV community
centers around shared values around confidentiality - to respect each other’s
privacy and the expectation that their disclosure and hence status would be
contained within the community - and was built into the HIV community, as
observed in other contexts (Karusala et al., 2021; Bussone et al., 2020). By
upholding the obligation to protect other PLHIV’s status, PLHIV empower their
peers to take control of their disclosure processes.

####  6.1.2. Client Trust in the Health System

Participants wanted their data to demonstrate Malawi’s effective HIV response.
Participants understood that their data is used by donors in other countries
to assess the overall HIV program and to inform global support levels for
Malawi’s ART activities. Although the concerns around data privacy have been
seen as a contributor to data sharing hesitancy (Yeager et al., 2014; Eden et
al., 2016), participants in our study believed that data privacy and data
sharing are compatible with one another, given that there are security
assurances. With respect to RQ2, PLHIV’s interests in contributing their data
for HIV program assessment and global ART funding stem from PLHIV’s trust in
Malawi’s health system to protect client confidentiality. We deduce that
clients’ trust in data sharing derives from their trust in national privacy
protection efforts and their providers, who are the main users of digital and
paper tools (Esmaeilzadeh et al., 2019). As clients’ closest point of contact
in the health system, providers are responsible for ensuring that their work
practices align with client privacy expectations and for enhancing client-
provider relations.

###  6.2. Successful Mobile Device Adoption in an LMIC Health System

Our work adds to research that recognizes the viability of mobile devices for
healthcare in LMICs and their potential for improving the quality of care
despite weaknesses in infrastructure or management (Okolo et al., 2021; Yadav
et al., 2021; Hall et al., 2014; Rivera-Romero et al., 2018; Sadasivam et al.,
2012; McCool et al., 2022). With respect to RQ3, PLHIV not only accepted the
integration of devices into care, but also recognized the value of digital
health for enhancing care delivery, though some participants were uncertain
about technical security mechanisms and exact usage practices. Participants
understood that digital systems could enable quick access to laboratory
results and client outcomes and enhance provider decision-making, which are
features of real-time point-of-care technologies that are shown to contribute
to promising results in HIV care (Tweya et al., 2016; Oluoch et al., 2012;
Douglas et al., 2010b; Alotaibi and Federico, 2017). These findings stand in
contrast to technology acceptability in LMICs from over a decade ago in which
handheld devices used for health documentation and surveying were viewed with
suspicion and confusion by respondents (Cheng et al., 2011). Participants’
understanding of and acceptance of tablets used in care illustrates an
increased familiarity with digital systems in healthcare contexts and mobile
devices at large (Handforth and Wilson, 2019). At the same time, some
participants were uncertain about how devices were used especially outside of
appointments, calling for continued efforts to inform clients of device
purpose and security.

As participants acknowledged, technologies do not function alone: providers
and Lighthouse as a whole must continue to prioritize clients’ needs in terms
of privacy and quality of care. In CBC settings, the expansion of tablet-based
care likely stemmed from prior, positive exposure to digital data collection
at Lighthouse’s facilities, allowing tablet adoption to be accomplished
without creating friction or opposition from clients. With nearly seven years
of tablet-based data collection and recent efforts to optimize the process,
Lighthouse offers an example of successful integration of mobile devices in
healthcare, contrary to many mobile device-based health projects in LMICs that
do not venture beyond pilot studies due to the lack of follow-ups and rigorous
evaluations (Hall et al., 2014; Kemp and Velloza, 2018).

###  6.3. Recommendations for Strong Digital Health Systems in LMICs

Lighthouse makes data privacy a priority. However, gaps remain and may be
greater in contexts or settings where client concerns are not as widely
recognized or prioritized. In Malawi and other LMIC contexts, health systems
face challenges with privacy regulation and mechanisms for redress. The
existing state of health systems and the large population of PLHIV in LMICs
call for continued interventions that can improve protocols, policies,
training, and supervision. This agenda is further motivated by the nascent
digital infrastructure of many LMICs that provides an early opportunity for
data security interventions that can be built into health systems, as opposed
to being retrofitted. With these considerations in mind and building on
participants’ inputs, we provide the following recommendations for building
strong digital health systems in LMICs while advocating for continued
consideration of clients’ voices.

First, clients should be communicated about their data and how it is used in
accessible, non-technical language. Similar to previous research that notes
that providing access to data is insufficient if clients are not able to
understand their data (Zhang et al., 2020; Nystrom et al., 2018; Gonzales and
Riek, 2013; Rajabiyazdi et al., 2017), Lighthouse clients want help to
translate health information from their health passports into accessible
language. Health information should be presented to clients in layperson’s
terms (Park et al., 2017) that enable clients to interpret their data for
influencing everyday practices for health management. During clinical
encounters, providers should leverage devices at the point-of-care as “common
information spaces” for interactive conversation between clients and
providers, not for one-way documentation of client responses (Reddy et al.,
2001; Hughes et al., 1997; Chen et al., 2011). In terms of data sharing, while
some participants understood the difference between aggregate data and client-
level data, this distinction was not obvious to all. First and foremost,
clients should be educated about aggregate vs. client-level data. To assuage
privacy concerns, the health system should provide clients with a transparent
disclosure of the way different data is used and educate clients about data
protection strategies (Hussein et al., 2022). Specifically, that aggregate
data is beneficial for strengthening the health system and informing decision-
making, while client-level data benefits client’s individual care when shared
across individuals involved with care. At the same time, clients should be
ensured that client-level data is never publicly released. We also note that
during the FGDs, we informed participants about Malawi’s in-country policy on
data hosting which opened up discussion. Echoing recommendations from prior
work (Eden et al., 2016; Esmaeilzadeh et al., 2019), we encourage such
explanation of privacy protection policies and efforts in comprehensible
language to build client trust in the health system.

Second, the health system should leverage clients’ familiarity with technology
to enhance the acceptability of devices used in care. As clients are one of
the main beneficiaries of technologies at the point-of-care, their experiences
and perspectives should be at the center of technology development and
adoption efforts. Clients had a partial understanding of the role of digital
data, the purposes of devices at the point-of-care, and the strengths of
devices over paper records. Overall, because of their familiarity with
computers at the point-of-care in facilities, CBC clients were comfortable
with and accepted tablets in their care. Based on our findings, we recommend
that in addition to considering the digital maturity of an environment -
identifying the level of technology that an environment is prepared for,
considering the sustainability of technology usage, and setting realistic
expectations for technology use (Faulkenberry et al., 2022) \- the health
system should build on clients’ familiarity with technology to ensure that new
technologies are accepted by clients. There should be continuous efforts to
enhance client familiarity even after technology adoption, by providing clear
explanations of the technologies’ purpose and clarifying the technologies’
value (Knipe et al., 2014).

Third, technologies should be secure beyond client expectations by meeting
global security standards. While some participants had an understanding of
various security protocols, such as passwords and access controls, digital
security was not a major concern. Rather, clients were more interested in the
health system’s efforts to protect client privacy, namely policies, execution
of data sharing, and provider practices (Shield et al., 2010). This in turn
may reflect an expectation that the health system and its governance will
ensure robust, highly-secure technologies. Clients’ trust in the health system
urges a call to action to ensure that technical security is competently built,
assessed, strengthened, and sustained by professionals. Those responsible for
eHealth initiatives should ensure that global standards for security are met.
These global standards include the Principles for Digital Development (Dig,
2020) which identify core tenets of addressing security and privacy, and the
Health Data Governance Principles (Health, 2022), which outline standards for
the usage of data within and across health systems, promote learning from
well-established policies and regulations, and outline limitations on data
access.

###  6.4. Limitations and Future Work

While this study has a sufficient sample size of participants to reach data
saturation, the findings of this study are not generalizable to all clients at
Lighthouse. We also acknowledge that the recommendations we make for building
strong digital health systems in LMICs may not necessarily be applicable to
all health systems in LMICs, given different levels of maturity with digital
health integration. Lastly, we aim to use these findings to support additional
data security training for Lighthouse and similar LMICs, providing guidance
for improved practices stemming directly from these lessons learned.

##  7\. Conclusion

In LMICs, eHealth initiatives are increasing rapidly because of their
potential to support comprehensive care, including across the HIV care
continuum. Focusing on clients’ data privacy perspectives and priorities is
critical for enhancing security and confidence in eHealth systems. In an
effort to elevate clients’ voices, we explored ART client perspectives on data
security and privacy in Malawi’s HIV health system. Our findings suggest that
PLHIV have a broad privacy framework that centers around concerns of how
poorly managed or protected data could lead to unwanted disclosure of positive
HIV status. Although disclosure considerations impact various decisions ART
clients make, these clients trusted that Lighthouse and Malawi’s health system
will protect their data and themselves from unintended disclosure. This trust
led PLHIV in this context to support digital data collection for client care
management, with likely personal benefits, and for data sharing to secure more
global health funding – a benefit for the ART program, overall.

Overall, this work highlights the importance of building strong digital health
systems that can respond to clients’ expectations and trust. PLHIV in our
study understood the value of devices in their care, although some
uncertainties remained. At the same time, technology-related threats to data
privacy were not a major concern for PLHIV in this context, demonstrating
their expectation of the health system to build and maintain secure
technologies. Health systems should continue to make all efforts to ensure
that digital health systems are reliably built, assessed, strengthened, and
sustained. Especially in LMICs which are understudied and face resource
challenges, ensuring a robust eHealth system with secure data protections from
data collection through sharing of aggregate data is critical for client
confidence and participation. We encourage HCI researchers to explore client
perspectives in other LMICs to inform decisions for client data protections,
develop secure and client-centered technologies, and smoothly integrate
eHealth initiatives across data users, from clients to the MoH.

###### Acknowledgements.

Research reported in this publication was partially supported by the National
Institutes of Health (NIH), National Institute of Mental Health (NIMH) under
award number R21MH127992 (“The Community-based ART REtention and Suppression
(CARES) App: an innovation to improve patient monitoring and evaluation data
in community-based antiretroviral therapy programs in Lilongwe, Malawi”),
under multiple principal investigators, Feldacker and Tweya. The authors would
also like to thank the Lighthouse Trust and the MoH, Malawi, for their
contributions, insights, and recommendations to this important area of study.
The content is solely the responsibility of the authors and does not
necessarily represent the official views of the NIH, NIMH. Lighthouse Trust,
nor Malawi MoH.

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