Hospitals conceal patients' health data -- MPs

Aug 31, 2023

The Woman MP for Ngora district Stella Apolot said that issues of data collection and protection still remain a challenge since some patients go to health facilities and cannot access information on the previous treatment.

Stella Apolot Isodo Woman Member of Parliament Ngora district discussing about health data during stakeholder’s engagement on health data governance on August 29, 2023. Photos by Mary Kansiime

Juliet Waiswa
Journalist @New Vision

Members of Parliament (MPs) have leant that majority of patients who visit health facilities are not given access to their health data.

The MPs sitting on Parliamentary quality assurance committee say that many people come to health facilities but since they do not have data concerning their health, they at times get wrong medication and in the worst cases die.

 “I have realized that patient’s health is endangered because they don’t know their right to health and access, the MP for Ntwetwe Joel Ssebikaali explained.

Ssebikaali who is also a member of the health committee in parliament was responding to concerns raised by Civil Society Organization (CSOs) concerning the data collected, in health facilities and how it is managed.

Immaculate Owomugisha Head Advocacy and Strategic Litigation at UGANET discussing about health Data during stakeholder’s engagement on health data governance at Fairway hotel on August 29, 2023.photo by Mary Kansiime

Immaculate Owomugisha Head Advocacy and Strategic Litigation at UGANET discussing about health Data during stakeholder’s engagement on health data governance at Fairway hotel on August 29, 2023.photo by Mary Kansiime

During a health data protection meeting held on Tuesday 29 at Fairway Hotel, they explained although there are laws that protect patients, they cannot access their data when in need of it.

The Woman MP for Ngora district Stella Apolot said that issues of data collection and protection still remain a challenge since some patients go to health facilities and cannot access information on the previous treatment.

“I have an incident in which I took my son to hospital but was not helped since I didn’t have his health data so we moved from one health facility to another but all health workers were guessing his aliment,” she said.

The CSOs were advocating with governments to ensure health data governance resolution on a framework on the World Health Organization (WHO) agenda.

“We want to see a global framework domesticated into national legislation “We need government to support and adopt a World Health Assembly resolution mandating the WHO to develop a global health data framework,” Salome Atim Director at Engendering Gender International Uganda said.

Atim said that the reason why there should be a law on data protection is because patients are not aware of their rights and whom to approach in case, they need assistance during treatment.

The CSOs posed queries like, “Who determines how our health data is collected, managed, used, stored and disposed, what are the limits of the authority, how can we ensure this data is going to be used for public benefit purpose,” Atim queried.

Shaban Mugerwa Coordinator Equity Human Rights and Gender at Uganda AIDS Commission discussing about health Data during stakeholder’s engagement on health data governance at Fairway hotel on August 29, 2023

Shaban Mugerwa Coordinator Equity Human Rights and Gender at Uganda AIDS Commission discussing about health Data during stakeholder’s engagement on health data governance at Fairway hotel on August 29, 2023

She said,” How much access and control should individuals have over their personal health data and how should patients ensure this ownership and control is represented and protected,” she noted.  These and many other issues were the concerns raised by the CSOs.

What the law states

The Head, Advocacy and Strategic Litigation · Uganda Network on Law, Ethics and HIV/AIDS(UGANET) Immaculate Owomugisha stated that the Data Protection and Privacy Act of 2019 provides guidelines for the collection, storage, and use of personal data, including health data.

Owomugisha said that according to section 7(1) of the same act, “No person shall collect or process personal data without the consent of the data subject".Citing the law, she said section 8(1) prohibits the collection or processing of "special personal data" without the explicit consent of the data subject

Other section 10(1) of the Act states that "personal data shall be collected for a specific, explicit and legitimate purpose". This means that there must have a specific reason for collecting and processing patient data.

Ministry of Health

The Coordinator Equity Human Rights and Gender at Uganda Aids Commissioner Dr. Shaban Mugerwa explained that Data Collection and Management is done by the Ministry of Health, health facilities, research institutions CSOs and development partners

Mugerwa added that Uganda has established a Health Management Information System to collect, process, and disseminate health-related data.

“This system helps in monitoring health services, disease prevalence, and healthcare delivery across the country,” he noted

He said access and use of health data are subject to data privacy and protection regulations. The Data Protection and Privacy Act of 2019 provides guidelines for the collection, storage, and use of personal data, including health data.

Affected persons speak

Jayson Yiga from Uganda Network of young people living with HIV & AIDS said that he has been thrown out of several jobs after his HIV status was revealed.

“I have been denied four jobs after presenting my status,” Yiga said.

Register to begin your journey to our premium content .