CSOs Demand for enactment of Health Data Protection Law.

15 August 2023

A consortium of Civil Society Organizations are concerned that medical related data collected in both private and public health facilities is at times mismanaged hence leading to encroachment on heath privacy .

The Civil Society group that includes Out and Proud Advocates for Health and Rights, Uganda Harn Reduction Network and Engendering Gender International, Uganda say that a lot of personal data is at risk due to lack of streamlined protection measures in the law.

The campaign manager Out and Proud Advocates for Health and Rights Doreen Asiimwe , an organization that advocates for health rights ,explains that they have embarked on a one year campaign dubbed ‘’My Data our health’’ aimed at creating awareness among the populace and also advocate for enactment of a law to regulate and protect health data .

Asiimwe notes that citizens need to know why and how their medical data is put to use.

He says that on many occasions a lot of irrelevant personal data is collected at a time of filling medical forms which contradicts the data protection principle that calls for compliance at all levels of personal data management ,citing the principle that calls for collection, process, use adequate ,relevant and not excessive or unnecessary personal data .

Asiimwe cites the Covid 19 pandemic when many digital health applications were developed to enable people access medical care however, according to the advocates, such platforms are not regulated which poses a risk on how the personal data is used.

Now the coalition heads demand that the authorities come up with measures that will safeguard personal health data.

Meanwhile the chairperson for the parliamentary health committee Dr. Charles Ayume, advised the group to officially petition parliament in case of any gaps in the data protection Act 2019.

Among other channels through which the coalition is seeking redress in the data protection Act is the World Health Assembly (WHA) to discuss important health challenges among other issues.

Speaking during the community awareness meeting in Kampala, Asiimwe noted that together with their supporters Transform Health and KANCO, they want governments to prioritize the development of a global health data governance framework that would form the basis for national legislation on how health data is collected, managed, used, stored and disposed of.

Story by

Eve Namugabi