Patients should access their health data — Activists
Apr 20, 2023
“Patients should be able to receive data concerning their health as a way of being able to monitor their health as they receive their health care," Atim said.

The director at Engendering Gender International Uganda, Salome Atim in Cream suit with activists and some of the affected members. (Photo by Juliet Waiswa))

Juliet Waiswa
Journalist @New Vision
KAMPALA | HEALTH DATA | ACTIVISTS
Having experienced ill health continuously, Joseph Mutebi finally resolved to visit a government hospital for a body check-up, though he didn’t know what was bothering him.
The doctor diagnosed him and subsequently gave him treatment without telling him what he was suffering from.
“Will you, please, let me know what my health problem is?" I got a new job, and my new employer would want to see my medical form,” Mutebi pleaded with the health worker, to which he replied: “Sorry, it is confidential, but meanwhile, stay in the hospital.”
Mutebi is not alone. Several patients have tasted what Mutebi experienced. They go to hospitals for treatment, but more often than not, health workers don’t allow them to access the data they collected about them. Others are not even allowed to question the health workers, though they will take the prescribed medicines.
Josephine Nabirye, another case in point, is allergic to sulfur. When she asked the doctor whether the medication, she was given contained sulfur, the health worker rudely replied: “Go take the tablets, stop asking so many questions".
A few days later, Nabirye's body developed hives. Several patients do not know how their health data is stored and managed, who has access to it, and for what purposes it is being used. It is against this background that a global campaign about my data and my health, advocating for access to our health data from health facilities, has been launched.
The campaign, dubbed: My Data, Our Health, is a global campaign aimed at stimulating action on health data and exploring questions of how we can ensure that our health data can be used to improve health while upholding our digital rights.
During a meeting on My Data, My Health, held at the Sampro Hotel in Rubaga, Kampala, on Friday, health activists said that the failure of hospitals or any health facilities to allow a patient access to medical records is a violation of the right to access information.
“Patients should be able to receive data concerning their health as a way of being able to monitor their health as they receive their health care," the director at Engendering Gender International Uganda, Salome Atim, said.
She added that a mobilization campaign to raise awareness on the issue of health data and encourage public and political involvement in promoting access to information is paramount. She, however, regretted that in most cases, patients fail to know how their health data is collected, managed, used, stored, and disposed of.
Failing to give a patient information on their health is a violation of the patient’s rights, according to the law. She said that patients should know how much access and control they should have over their health data and ensure that ownership and control are respected and protected.
“Transform Health is launching a mobilization campaign to raise awareness on the issue of health data and to encourage public and political knowledge of how personal health data is collected, managed, used, stored, and disposed of.
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