The East African Community (EAC) should develop a common health data governance policy or framework in this digital era where disease and patient-related information should be effectively and ethically harnessed for better results, legislators and medical experts have said.

They made the call on November 18, during the first EAC Annual Inter-parliamentary Forum on Sexual Reproductive Health (SRH) or Reproductive, Maternal, Newborn, Child and Adolescent Health (RMNCAH) in Kigali, Rwanda.

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The two-day meeting seeks to deliberate on EAC Regional and Continental Health Data Governance initiatives and Digital Health agenda, and how to leverage digital data for universal healthcare.

Held under the theme "Unlocking the Power of Digital Transformation for a Healthier EAC,” the forum was convened by the EAC Secretariat in conjunction with the East African Legislative Assembly (EALA).

While delivering a presentation titled "Strengthening Health Data Governance in Africa: Gathering Support for the Development of an African Common Position," Tom Oluoch, a member of the Board of the Pan African Health Informatics

Association (HELINA), indicated that improved governance of health data is needed for reasons including addressing issues of data privacy, ownership, sharing, and access.

Other reasons are to maximise public benefit of health (and health related) data, whilst managing risks and safeguarding individual rights.

There are a lot of benefits of enhanced health data governance, which including strengthening emergency response, advanced research and innovation, he indicated.

He pointed out that improved governance of health data will reduce fragmentation, duplicative systems, and wastage, leading to increased efficiency and performance of public health investments.

"There is a lot of movement of citizens across the borders – the borders are something very artificial. So, there is a need for sharing patient data for better decision making, and continuity of healthcare if [for instance] somebody (a doctor) initiates a treatment on the Kenyan side, and a patient crosses into the Ugandan side,” he said.

EALA MP Paul Musamali said that the Covid-19 pandemic revealed that EAC was not moving together in terms of health data and system management, as the systems were not talking to one another.

"As you may be aware, when we were confronted by Covid, that’s when we realised that we were naked because countries started working in silos, and we were unable to move. So, in fact, it demonstrated that we are not integrated,” he said.

"They have tested you in one capital, you are crossing over to another one, they are asking, they are even testing you afresh. So, what happened?” he wondered.

"But, we believe that with this initiative now at EAC level, we will be able to move as one,” he said.

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Ensuring data privacy protection

On building consensus on minimum standards for health data governance regulation, he cited improved harmonisation for data sharing across countries, focusing on the regulatory environment to hold all actors accountable nationally, and foundation for improved public trust in health data systems.

MP Fatuma Ndangiza underscored the need for a digital health [data] governance policy or a strategy at the level of EAC, pointing out that this is an important area that is going to impact technologies in healthcare, and issues of privacy, among other aspects.

"Of recent, we had some of the insurance companies, especially the life insurance. Sometimes they ask for information that is a bit confidential ... They want your HIV status, and status on all these communicable and non-communicable diseases before you have access to their insurance. And of course, you send the information online. Are we safe?” she asked.

She called for ensuring privacy and personal data protection in terms of digital health governance.

EAC Principal Health Officer, Dr. Eric Nzeyimana, said that they want to work with members of parliaments to come up with a clear health data governance framework in the region, and a roadmap on how to realise that.

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He indicated that donors are driving the health department in terms of financing, while the total budget that comes from EAC Partner States is only almost $50,000 per year, "which puts us in a difficult situation,” given the inability to swiftly respond to disease outbreaks as a result of limited funding.

He appealed for a sustainable funding mechanism to domestically finance EAC health programmes in an effective manner.