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Patients demand access to health data
What you need to know:
- Mr Kanyike revealed that he almost lost a new job opportunity, after failing to access his health data on time from a health facility where he had been receiving medical care
A section of patients have requested health workers to ease access to medical health data.
Mr Jovan Kanyike, a businessman who said he is a client of one the hospitals in Kampala, told this publication that whereas it is so easy for medical personnel to get information from patients, it was so hard for the latter to access health information when need arises.
Mr Kanyike revealed that he almost lost a new job opportunity, after failing to access his health data on time from a health facility where he had been receiving medical care.
"I was in the process of getting a new job and one of the requirements was to present documents about my health. I went to the hospital where I had been receiving treatment and asked for my health data. They asked me why I needed my health data. ….they were like, ‘for what, come back after tomorrow.’ It took me almost two weeks to access the information. It was a really a struggle," he said.
Another patient, Ms Naigaga Madina's experience was not any different. She said that after treating her son for malaria at a certain health facility without any improvement, she took him to another health facility. On arrival at the new facility, the doctor requested her for a medical form from the facility where her son had been receiving treatment. Unfortunately, she was not able to access the information from that facility when she returned to request for it.
"When I went back to ask for a medical form, they kept telling me to be patient until I gave up," Ms Najgaga said.
The Executive Director of Engendering Gender International Uganda, ( EGIU), Ms Salome Atim said having access to personal health data by patients is critical for better decision making when seeking health care elsewhere, yet it was still a hurdle to get hold of their data, due to bureaucracy and other reasons not known to patients.
"When you go to hospitals or big clinics, they open a file for you. Every time you fall sick, information about your health is recorded there. However, this information is not relayed back to the owner. In more developed countries, patients can request and receive detailed digital information about their diagnosis, treatment and appointments on email. That way, they are empowered to manage their health better," Ms Atim said.
"Hospitals should be in position to avail to patients details about what they are suffering from, the kind of medication they are receiving, expected side effects, and the duration of treatment. In case of an operation, an explanation of the ailment and the need for operation, including a caesarean birth should be available,"she further explained.
Ms Atim explained that if patients' health information is not kept a secret, they would be in position to share it with other health service providers, especially when they relocate to new places.
She said important information such as blood group, adverse reactions to particular medicines, complicated pregnancies, heart disease among others can save a life or minimize suffering.
She noted that whereas it is good for patients to provide adequate health data to the medical workers for better management, it is equally important for health workers and facilities to give this data to their clients when they need it, to better manage themselves as well.
"A person living with HIV for example, will need their detailed health data so that they can share with a new service provider when they relocate to another place or country. That way, the medical workers get to know the medication that works, what has failed and why?"Ms Atim said.
She said her organisation in partnership with the Kenya AIDS NGOs Consortium(CANCO) are promoting a campaign dubbed , " My Data, Our Health", to help citizens know and enjoy their right to access their health information.
My Data, My Health , is a global campaign aimed at galvanizing action on health data and exploring questions of how to ensure that personal health data can be used to improve health for all, while up-holding digital rights.
According to Uganda's Access to Information Act, every citizen has a right of access to information and records in the possession of the State or any public body, except where the release of information is likely to prejudice the security or sovereignty of the State or interfere with the right of privacy of any other person.
Ms Atim also revealed that sometimes, this right is abused by people who secretly access information regarding other people's health without their consent.
"We have heard cases where spouses and in-laws of women living with HIV have gone behind their backs and obtained information about their HIV status and general sexual and reproductive health information. This is wrong,"she said.
Dr Okwaro Obuku, a Senior Technical Advisor, Data and Policy at Infectious Diseases Institute (IDI) said it is in accordance with the law for the patients to access information about their health, from health facilities where they receive care.
"Access to information is enshrined in the Uganda Constitution. Access to public and private information that is medical in nature is also covered under the Data Protection and Privacy Act, 2019 which Uganda Medical Association contributed to," Dr Obuku who is also the former President of Uganda Medical Association said.
Dr Obuku however, noted that some hospitals may prefer to provide a summary report, while others may provide a photocopy of the patient's records.
He also said that sometimes, hospitals find it risky to share certain information for fear of incurring what he termed as expensive costs, in case they are sued by a patient.
Mr Kenneth Mwehonge, another human rights activist said, digitization of medical data, could help citizens access it online whenever they need it.
