HENNET Raises Privacy Concerns on Custody of Kenyans’ Health Records
By Mercy Musangi
The rush to digitise Kenya’s health system must be matched by greater transparency over who collects, accesses, shares and controls patients’ personal health information, the Health NGOs Network (HENNET) has warned.
Through its “My Data, Our Health” campaign, HENNET is seeking to make health-data governance a public issue, arguing that Kenyans should not be expected to surrender increasingly sensitive information without understanding what happens to it once it leaves their hands.
The campaign comes as Kenya accelerates the shift from paper-based records to digital health systems, a transformation expected to improve continuity of care, health planning, resource allocation, research and evidence-based decision-making.
But HENNET Advocacy, Communication and Programme Manager Sharon Musakali (Pictured below) says the digital transformation must not be viewed simply as a technological project.
“Behind every health record is a person, a family and potentially highly sensitive personal information,” Musakali said.
She said Kenyans should be asking fundamental questions about their health information: Who collects it? Who can access it? For what purpose is it being collected? Under what circumstances can it be shared? How is it protected? And what rights does an individual have over the information?
“These should not be questions left only to technology experts, policymakers or health institutions. They are questions that every Kenyan should be able to ask and receive answers,” she said.
The concerns become particularly important as health information becomes increasingly interconnected across facilities and systems.
For a patient, the issue is not merely whether a medical record is stored electronically.
It is whether sensitive information remains confidential, who can retrieve it, whether it can be shared with another institution and what safeguards exist against unauthorised access, misuse or disclosure.
Musakali cited questions that could confront ordinary patients, including whether a parent can access a child’s health records, whether sensitive medical information remains confidential and whether a patient’s records can follow them when they move from one health facility to another.
Such questions, she said, demonstrate why public understanding must develop alongside the technology.
HENNET is not calling for health data to be kept out of digital systems. Rather, the organisation says the benefits of data-driven healthcare must be accompanied by clear safeguards, transparency and accountability.
Reliable health data can help government and health planners identify population needs, allocate resources, improve services and support research and innovation.
But, Musakali said, public confidence will depend on whether Kenyans believe their information is being handled responsibly.
“This is where civil society has an important role,” she said.
HENNET says it intends to serve as a link between communities, government, health institutions, technology actors and policymakers, helping ordinary citizens understand the implications of digital health and giving communities a voice in discussions about how their information is collected and used.
The organisation has already begun engaging communities and stakeholders and says there is growing interest in understanding what Kenya’s digital health transformation means at an individual level.
HENNET is also urging the media to make health-data governance part of the wider public-interest conversation.
Musakali said journalists have a role in translating complex questions about digital systems, data governance and privacy into issues that ordinary patients can understand and interrogate.
At the heart of the campaign is a simple question that HENNET says every Kenyan should be able to ask: “My health information is being collected. What happens to it after I leave the hospital?”
Musakali said HENNET would continue working with government, civil society, communities, young people, health professionals, technology actors and the media to promote a digital health system that is people-centred, inclusive and accountable.
“We do not want a future where technology advances faster than public understanding or public trust,” she said.
HENNET says its vision is a health system in which citizens understand their rights, institutions can be held accountable for how health information is handled, and data is responsibly used to improve healthcare. “The future of healthcare is digital. But it must remain human,” Musakali said.
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