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Perspectives of People Living with HIV on Data Privacy and Digital Health Tools in Malawi

Core Concepts
People living with HIV in Malawi have broad privacy concerns centered around the risk of unintended disclosure of their positive HIV status, which influences their decisions and behaviors in healthcare. They trust the national health system and their healthcare providers to protect their data confidentiality, and they recognize the value of digital health tools for improving care delivery, though some uncertainties remain about technical security mechanisms.
The study explored the perspectives of people living with HIV (PLHIV) on antiretroviral therapy (ART) in Malawi regarding data security, privacy, and the use of electronic and mobile data collection tools in their HIV care. Key highlights: PLHIV have a broad privacy framework that centers around concerns and fears associated with unintended disclosure of positive HIV status, though they are less concerned about disclosing within the HIV community. PLHIV trust the national health system, including the Lighthouse Trust clinic, and their healthcare providers to protect their data confidentiality. They believe data sharing with the government and donors is important for sustaining HIV care programs. PLHIV understand the purposes and benefits of the computers, tablets, and paper-based health passports used for data collection during their care, though some uncertainties remain about technical security mechanisms and exact usage practices. PLHIV recognize the value of digital health tools for enhancing care delivery, such as quick access to lab results and improved provider decision-making, reflecting increased familiarity with digital systems in healthcare. The findings highlight the need to prioritize client privacy and build robust digital health systems in low-resource settings with limited privacy regulations and political will to protect client data.
"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." "I have young sisters and brothers, but I have never disclosed to them because of how they talk, discriminatory." "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." "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." "[The cleaners and guards] are talkative ... When you are passing by, they will say 'don't admire her hips, she was at Lighthouse'."
"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." "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." "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."

Key Insights Distilled From

by Lisa Orii,Ca... at 04-09-2024
HIV Client Perspectives on Digital Health in Malawi

Deeper Inquiries

How can the health system better communicate with clients about the security mechanisms in place to protect their data and address any remaining uncertainties?

To improve communication with clients regarding data security mechanisms, the health system can implement the following strategies: Clear and Transparent Policies: Develop and communicate clear policies on data security and privacy to clients in a language that is easily understandable. Educational Materials: Provide educational materials, such as brochures or posters, explaining the security measures in place to protect client data. Training for Providers: Ensure that healthcare providers are well-trained on data security protocols and can effectively communicate these measures to clients. Interactive Sessions: Conduct interactive sessions or workshops where clients can ask questions and clarify any doubts they may have about data security. Regular Updates: Keep clients informed about any updates or changes in data security measures to maintain transparency and trust.

What are the potential unintended consequences of PLHIV's selective disclosure practices, and how can the health system support more open disclosure to reduce stigma and improve access to care?

Potential unintended consequences of selective disclosure practices by PLHIV include: Isolation: Selective disclosure may lead to feelings of isolation and loneliness as individuals may not have a support system to rely on. Delayed Treatment: Fear of disclosure may result in delayed treatment-seeking behavior, impacting health outcomes. Mental Health Issues: Keeping HIV status a secret can lead to increased stress, anxiety, and mental health issues. To support more open disclosure and reduce stigma, the health system can: Provide Counseling Services: Offer counseling services to help individuals navigate the disclosure process and cope with potential stigma. Community Support Groups: Facilitate support groups where PLHIV can share experiences and receive encouragement to disclose openly. Education and Awareness: Conduct community-wide education campaigns to reduce stigma and increase understanding of HIV. Confidentiality Assurance: Ensure strict confidentiality measures are in place to protect individuals who choose to disclose their status openly. Training for Healthcare Providers: Train healthcare providers on how to create a safe and supportive environment for open disclosure.

How can digital health innovations in low-resource settings leverage the existing trust between clients and healthcare providers to further enhance client-centered care and data privacy protections?

Digital health innovations in low-resource settings can leverage the trust between clients and healthcare providers by: Client Involvement: Involve clients in the design and implementation of digital health solutions to ensure they meet their needs and preferences. Provider Training: Provide training to healthcare providers on the use of digital tools and emphasize the importance of maintaining trust and confidentiality. Transparent Communication: Ensure transparent communication about how client data is collected, stored, and used to build trust and confidence in the system. Feedback Mechanisms: Establish feedback mechanisms where clients can provide input on the digital tools and report any privacy concerns. Continuous Support: Offer ongoing support and education to both clients and providers on the benefits and proper use of digital health technologies to enhance client-centered care and data privacy protections.