By Evans Dakwa
Beaulah (not her real name) will never forget the day her HIV status was exposed to a stranger. After a long day at a public antiretroviral therapy (ART) clinic, she accidentally left her medical card behind. A nurse from her community found it and handed it to a stranger to return it.
“I suspected he had read it by their demeanour and facial expression,” says Beulah, recalling the incident when a member of the community came home with her medical record card.
“I was terrified he would tell everyone. I couldn’t sleep for weeks as I feared the consequences of my HIV status coming out. I wasn’t ready for the fake sympathy, the stigma and discrimination which is still prevalent.”
Fortunately, the man kept her secret, but the incident has left her traumatised.
“I wanted to confront the nurse, but I was afraid of being treated poorly at the clinic if I did,” she adds.
Her story is one of many that exposes the challenges of medical privacy for people living with HIV in Zimbabwe. Despite progress in HIV treatment and care of about 1.23 million people living with the ailment in Zimbabwe, the handling of sensitive health data remains a critical issue.
Stigma and discrimination remain, albeit subtly, and breaches of confidentiality whether accidental or intentional can have negative consequences for the country whose management of HIV has been dubbed for the greater part a success story in Sub-Saharan Africa. Zimbabwe has brought down the HIV/AIDS prevalence rate from an all time high of 26.5% to the current 12.9%, and also achieved the UNAIDS 95 95 95 target.
Zimbabwe’s HIV response relies heavily on data collection to monitor treatment adherence, track viral loads, and allocate resources. However, the current system is riddled with vulnerabilities. Most public institutions where the majority are serviced rely on paper-based records which can easily be mishandled. In some cases, health workers, many of whom live in the same communities as their patients, by design or default, disclose sensitive information.
As these concerns among HIV patients become apparent , could the digitisation of medical records assist in safeguarding the privacy and dignity of people living with HIV? From secure data management to anonymized records, digital tools could change how health data is handled.
Tina’s Experience
Tina, a young woman from Masvingo, chose to seek routine ARV collection in Harare, 250 kms away from her hometown, to protect her privacy.
“Even the nurses at the local clinic don’t uphold confidentiality, a friend of mine had his status disclosed by a support staff member, and it spread like wildfire,” she says. “I don’t want to go through that, she says, exposing how HIV patients have to go the extra mile to protect their privacy.”
Tina’s experience was confirmed by Eddie, an ART nurse based in Guruve, a small Growth Point in rural Mashonaland Central, who acknowledges the problem.
“The public setup is too open and signposted that everyone knows that section is for HIV patients ,” he says.
“Patients feel exposed, and many opt to travel long distances for treatment to avoid being recognized.” He points to the segregation of HIV services as a major issue: “Having separate OI (opportunistic infections) sections at clinics entrenches discrimination. Patients feel marked.”
A Model for Digitisation and Privacy
In the face of these challenges, the potential of going paperless through digitisation presents. A privately run HIV treatment centre, which asked to remain anonymous, in the capital Harare, has adopted this practice and others to ensure patient privacy and data is protected.
Upon visiting this institution, I didn’t even recognise it houses a section for persons living with HIV. Its systems are so integrated and its patient information is digital.
“We have a system that is fully digital with patient records being handled by a specific individual and the files are encrypted, only accessed by individuals with authority to do so. Support staff do not have access, ” said a senior nurse at the institution.
“Our system allows us to effortlessly track patient progress, it gives notification when one is due for their routine test like the viral load,” she adds. “If a patient misses their appointment the system also notifies for immediate follow up.”
While this is the ideal situation significant challenges do remain elsewhere.
Byson, a data capturer for a PEPFAR-funded HIV program, highlights the importance of infrastructure and training.
“We need more space at clinics and hospitals to integrate and accommodate patients, the container and separate system(goods containers transformed into makeshift treatment areas for HIV patients in Zimbabwe’s public health system) where established as the main medical institutions could not deal with the largest group visiting hospitals” he says, adding that the “staff needed ongoing training to uphold confidentiality.”
He also said going digital is the safest way as long as staff abide by the terms of handling public data.
Communications expert Tapiwa Zivira who works with a local rights organisation highlights that digitisation and adoption of Artificial Intelligence (AI) provides hope and possible solutions if holistically integrated.
He underscored the importance of context-specific AI solutions or there is risk of solving one problem whilst creating another.
“Many people rely on AI for information, but the data they get is often not tailored to our context. We need AI tools that are specific to Zimbabwe’s needs,” he urged.
What Does the Law Say
Human rights lawyer Zororai Nkomo said there are three possible avenues to find redress if a patient’s confidentiality and privacy rights are breached: reporting the incident to the police for criminal prosecution; suing for damages, which is a civil route; and lodging a complaint to the Health Professionals Council. This body can take disciplinary action against its members.
He also warned that sharing one’s health information without consent has repercussions under Zimbabwean law.
“Tampering with the data of patients without their consent is a violation of human rights as provided in Zimbabwean statutes and other international human rights instruments,” he said, adding that the Universal Declaration of Human Rights provides the right to privacy including the right to medical privacy.
“Confidentiality of patients should be treated with high moral and ethical consideration because it’s about the right to dignity and autonomy of patients. It’s not a privilege to keep patients’ information, but it’s a constitutional obligation to safeguard their constitutionally entrenched rights.”
Way Forward
As concerns around the handling of data and privacy of persons living with HIV are laid bare, the government has acknowledged existing challenges, promising solutions to alleviate the problem.
“We are in the process of establishing e-health and tele-medicine systems which will enable us to move away from this paper thing to paperless, thus improving the handling of data and management of patients,” says the Deputy Minister of Health and Child Care, Dr Sleiman Kwidini.
It is also the hope of the government that the establishment of the National Health Insurance, a state backed scheme which aims to provide access to basic health services will form part of a raft of measures that will improve patient welfare as outlined by the Deputy Minister.
NB:The above article was first published on the Ziyah News website and is reproduced here with the approval of the author
